Does anyone here have an underactive thyroid?

[tweetyshells]

Can anyone please help advise how the hell you pull yourself through the depression that hits when it starts not working properly again?:(

I REALLY REALLY REALLY dont want to be put on tablets (anti depressants )again, not this time. I mean once its regulated again i should be ok right?:cry:

[jinky67]

hate to disappoint you but i was told it was a lifelong condition.
keep taking those pills!

[tweetyshells]

I know its a lifelong condition, i have had it for probably 10 years. Th depression only hits when its not at the level it should be. I have been stable for many years now until the last few months...

[Twinny99]

Its my experience sadly that the two go hand in hand.......

[jinky67]

sorry i misunderstood,
must be bad then cos i dont get that

[tweetyshells]

Sorry i probably didnt explain myself very well.

[CrazyCat]

Hi - I've had an underactive thyroid for about 20 years and know exactly what you mean. When I'm feeling a bit down I take St Johns Wort for a few days until it levels out again - helps no end.

May I suggest you ask your GP to refer you to see an endocrinologist? If your medication isn't making you feel better then there could be something else going on too.

In the summer after my GP said my dosage was too high according to the blood test but I was feeling decidedly "under". The endocrinologist chap I saw said that after taking thyroxine for may years sometimes the body has trouble converting the T4 in the medication into the T3 that the body utilizes.

I now take both T4 (thyroxine) and T3 (Liothyronine) and feel 100% better :D

There's some really interesting reading on this website:
http://www.tpa-uk.org.uk/index.php

Hope this helps!

[tweetyshells]

Thanks, Well i have only been taking my higher dose of thyroxine for a week so i dont expect it to be working yet. have to up the dose again on friday so it will have gone up by 50mg then. I do already feel a very slight difference, but not enough yet.
I will bare that in mind if i still feel !!!! once its meant to be kicking in.
Thanks alot for your helo though, its much nicer getting actual person experiences.
Can i ask do you get the horrible hot flushes with it?

[ali-t]

I know what you mean about feeling rough when the dosage is wrong. I get really tired and spaced out and live on sugar rushes from way too much chocolate when I am like that.

I generally can't be bothered doing anything but exercise really does work. I'm not into exercising but get the dog and go out for a long walk as often as possible to try to lift my mood.

I have also accepted that I need to listen to my body rather than fight against it so generally retreat into my shell and pamper myself if that is what I think I need.

I don't know of any medication that works but a spa break usually helps! lol.

[CrazyCat]

Can't say I've had a problem with hot flushes - in fact I seem to be permanently cold - especially my feet!

[littlereddevil]

They say if you get hot flushes the dose is too high

[the questioning eskimo]

i'm not on a very high dosage (only 75mg) and don't get depressed but i am permanently hot...is a real problem at work where the air-con fries me...

[tweetyshells]

They say if you get hot flushes the dose is too high


Mine was fine before but have always had the same problem with Thyroine, just a side effect for me i think. As if any lower i feel ill and its also too low according to docs. So not alot i can do about it. grr

I get the cold feet too, just a hot head lol

[I love Airedales]

Hello, I have just been diagnosed with Thyroid problem so I was very pleased to see this thread. UNTIL I read it. Haven't I got a lot to look forward to? Thank you for the link I will have a good read of that.
I was under the impression that once the doctor got the pills sorted you went back to normal, I take it this is not the case?
Take care all, ILA.

[tweetyshells]

Hello, I have just been diagnosed with Thyroid problem so I was very pleased to see this thread. UNTIL I read it. Haven't I got a lot to look forward to? Thank you for the link I will have a good read of that.
I was under the impression that once the doctor got the pills sorted you went back to normal, I take it this is not the case?
Take care all, ILA.

Once they get the dose right then yeah you can feel pretty good. Even when the dose is right though i get terrible hot flushes at times. Not everyone gets this though.
Hope your meds kick in soon. Can take a fair few weeks for them to work properly.

[CrazyCat]

It's not as bad as all that! Once you've got your dosage sorted out you'll be fine, but make sure that you have regular tests to monitor the levels as it's liable to change over time. It's all too easy to get the dosage correct to begin with then become complacent and not notice when things start to go wrong at a later date.

Just keep an eye open for your original symptoms, and don't be shy to ask for a blood test even if it's not due.

In my humble, if you've just been diagnosed then it'll e helpful for you to read up on it. There's a few good books on the market which make interesting reading (just type thyroid into Amazon and it'll bring back loads). I'd personally recommend the Barry Durrant-Peatfield book, but I'm sure plenty of the others will also be helpful.

[bristolleedsfan]

BMA do a Family Doctor Series with a book covering most health topics, available from lots of chemists within the series is a book called Understanding Thyroid Disorders, costs about 4.25.

TomsMum is a support worker on the subject whom i found very helpful when my doctor merely said blood tests have shown that u have an underactive thyroid and therefore im going to prescribe you a thyroid replacement. Neither Gp nor Chemist informed me that condition was qualification for free prescriptions. _pale_

In addition to Family Doctor Series being useful, quoting BMA source can be useful when tackling Family Doctor if not happy with how things are going.;)

As Some GPS seem to want to minimise face to face appointments, eight months on i wrote to mine informing him that i was both needing and able to sleep deeply for 6 hrs in day ( after lunch) and still being restful/Sleep deeply through the night, when i subsequently saw him a month later he informed me that he was happy with the dose ( 50mcg per day) so i read out to him what the BMA stated should be Drs aim when prescribing, he nodded in agreement, then pointed out to me that hes treating me as a person not statistics or science studies.

:wall:

To which i replied so what does me telling u how i feel + what the BMA say should be a Drs aim when prescribing =, to which he replied "oh yes u not feeling very good are you, how about i add 25mcg a day"

I quit while i was ahead. :cool:

Hes actually one of the more approachable GPs and a good listener so im wondering if GPs have been encouraged to prescribe the minimum to save NHS money. :think:

Link shows all the subjects covered by BMA Family Doctor Series, sometimes they can be picked up very cheap on ebay. :wink:

http://www.bma.org.uk/ap.nsf/Content/bmabooksonhealth

[cyclonebri1]

Can anyone please help advise how the hell you pull yourself through the depression that hits when it starts not working properly again?:(

Are you sure that thats whats causing your depression? if my underactive thyroid was my main worry, I'd be elated, they'd have to drag me down off the ceiling.
Sorry if I sound unsupportive, but I was diagnosed 4 yrs ago, more or less by accident as I didnt show the typical symptoms and conversely didn't show the resulting improvements so although I too am a permanent patient, I don't really know how it affects me other than my point below.

Just my experience. Is it a medical fact that the condition causes depression? or does it depend entirely down to the individual. Incase I appear as a critic may I add that I am on AD myself for other reasons and wonder if this keeps the effects of the thyroid condition masked.

As an observation it does appear to our GP's that if your treatment shows the dose is giving normal test results then you should feel no symptoms?
If thats correct why do I feel the need to were thermals 8 months of the year?

[ali-t]

Can anyone please help advise how the hell you pull yourself through the depression that hits when it starts not working properly again?:(

Are you sure that thats whats causing your depression? if my underactive thyroid was my main worry, I'd be elated, they'd have to drag me down off the ceiling.
Sorry if I sound unsupportive, but I was diagnosed 4 yrs ago, more or less by accident as I didnt show the typical symptoms and conversely didn't show the resulting improvements so although I too am a permanent patient, I don't really know how it affects me other than my point below.

Just my experience. Is it a medical fact that the condition causes depression? or does it depend entirely down to the individual. Incase I appear as a critic may I add that I am on AD myself for other reasons and wonder if this keeps the effects of the thyroid condition masked.

As an observation it does appear to our GP's that if your treatment shows the dose is giving normal test results then you should feel no symptoms?
If thats correct why do I feel the need to were thermals 8 months of the year?

many people on antidepressants with a diagnosis from their gp of depression do not actually have depression but have thyroid problems. My underactive thyroid was so severe before it was diagnosed that I went back to my gp asking for a psychiatric assessment as I was suffering so much anxiety and paranoia. Myxodema (SP) is another name for an underactive thyroid and the symptoms are known as myxodema madness. I had textbook depression symptoms and back pain but it took blood tests to show that it was my thyroid at fault.

one point that should be noted when looking on the net for advice forums etc for any health problem is that generally only sick people look at them. ;) I was feeling really down when I was diagnosed and looking on the net dragged me down further hearing about peoples negative experiences. So take note - the people who respond well to medication and get back to normal quickly don't go on health specific forums to brag about how well they are as those who are unwell wouldn't want to hear about that. ;)

[duchy]

According to my doctor my test results are stable enough not to require dose adjustment however I can predict really accurately when they have dropped-and have now given up asking him to adjust the dosage and simply do it myself. He says the difference is too low to justify changing the dose and I shouldn't feel any different-but I know the only times I'm plunged into depression is when it drops.
Quite honestly I don't think doctors know as much as the condition as they claim and I know I can directly relate it back to my depression.

[cuddlymarm]

Hi

I have an underactive throid and get depression and find that I get unbalanced because my thyroid does work occasionally which gives me temperature changes (if I'm too hot or cold its really uncomfortable and makes me irritable.)
If you are really bothered about how your feeling your GP will do blood tests in between the yearly ones but it does seem that depression comes as part of the condition and once you get your head round the idea that you've got it for the rest of your life its easier to live with the fact that occasionally you will feel down and downright miserable. Also don't forget that this is a chemical conditions and it is no failure to take tablets to balance it out and if you need to take antidepresents its not a sign of failure.
I hope you feel better soon
Cuddles

:grouphug: :grouphug: :grouphug: :grouphug:

[the questioning eskimo]

yep, don't forget to get your medical exemption card - you'll get free prescriptions for the rest of your life - i think you just need to renew the card every 5 years.

[bristolleedsfan]

As an observation it does appear to our GP's that if your treatment shows the dose is giving normal test results then you should feel no symptoms?
If thats correct why do I feel the need to were thermals 8 months of the year?


"Normal " test result covers a very big range, nobody can say what the correct level of thyroxine for each individual is, because people dont tend to have Blood Tests when they are well.

To the later poster who wondered how much GPs know about the condition. Reality is a GP is a general Practitioner, effectively a jack of all trades, a master of none.

[BallerinaGirl]

Interesting thread!

I too, have this condiditon. I have had surgery twice to remove lumps and nearly all of the gland itself and I now take 175mcgs per day.

I also have the swings of depression, days where I cannot even push a hoover and I will just sit looking at it and the freezing cold hands and feet.

I have found useful websites which have mentioned that exercise is a must for us "thyroidans" and particularly good is the Slimming World red days for losing weight, both of which I am doing and hopefully will start to see the benefits.

I can relate to everything everyone of you is saying, but the mood swings is a definate pain in the b*tt.....

[tweetyshells]

Thanks for all the replies, well i know that my depression is related to my thyroid now, doesnt matter if its a well known side effect, i know it is for me from experience.
I am starting to feel alot better on my higher dose of tablets already so things are looking up. I am meant to have put them up again this weekend but i haven't yet as i am a bit wary as started to get palpatations and tbh i dont feel i need the extra 25 on top of what i have already put it up. Gonna talk to the doc again and see how i feel.

[bristolleedsfan]

Subject cropped up here, for those who may not have been on the forum at that time.

http://forums.moneysavingexpert.com/showthread.html?t=483850

[melbury]

I have recently been diagnosed with under active thryoid and put on thyroxine. It was discovered quite by accident, I went to GP about something totally unrelated and he ordered some blood tests and it came back showing very underactive thyroid. I have put on weight (but did think that was because of stopping smoking) and have felt so tired lately.

PLEASE can anyone reassure me that the thyroxine treatment actually works. I have read so much about this and there is so much negative stuff written about it. I just want to feel normal again.

[elona]

melbury

It does work but it takes time to get the dosage right.

Please don't feel hopeless as there really is light at the end of the tunnel.

It just seems like a very long tunnel at times.

[CrazyCat]

Don't worry, it definitely works! Just keep your chin up and you'll be back to your old self in no time!

[poppy_f1]

i was diagnosed just over 2 weeks ago, never even considered that i had this, i was getting tests for other reasons but the GP tested me for everything, once i read up on the symptons i was surprised to see how many actually applied to me (struggling to lose weight, feeling cold and tired all the time)
been on medication but only 50mg of levothroxide(sp?) but have to go back in approx 4 weeks for more bloods to get my dose more accurate

reading some of the stuff scares me and its making me think about a lot of questions to ask my GP but i havent noticed yet any difference, maybe its cos of the dosage im on, its not making a big difference

doesnt help that the reason i went to the GP in the first place hasnt been sorted out (having to go for a mri scan via bupa on friday as their initial thoughts was gallstones but a ultrasound showed up nothing)
all i can say is im glad i now get free prescriptions as having to shell out for medication for the rest of my life would cost me a small fortune, plus it helps for the migrane medication when i need it

[melbury]

Like Poppy the original problem that I went to the doctors about is still unresolved. I get a very strong fluttery feeling in my chest, it even wakes me up at night - sometimes think I am having a heart attack:eek: Could this be yet another symptom of the underactive thyroid? The doctor doesn't seem to think so, but I don't know.

[bank_of_slate]

I'm currently taking 125mgs daily but I think it needs to go back up again.
I'm feeling very cold and sleepy again and for the last few days I've elt quite dizzy like the room is spinning and my brain is drunk!
Going for a blood test next week
... Linda xx

[melbury]

i was diagnosed just over 2 weeks ago, never even considered that i had this, i was getting tests for other reasons but the GP tested me for everything, once i read up on the symptons i was surprised to see how many actually applied to me (struggling to lose weight, feeling cold and tired all the time)
been on medication but only 50mg of levothroxide(sp?) but have to go back in approx 4 weeks for more bloods to get my dose more accurate

reading some of the stuff scares me and its making me think about a lot of questions to ask my GP but i havent noticed yet any difference, maybe its cos of the dosage im on, its not making a big difference

doesnt help that the reason i went to the GP in the first place hasnt been sorted out (having to go for a mri scan via bupa on friday as their initial thoughts was gallstones but a ultrasound showed up nothing)
all i can say is im glad i now get free prescriptions as having to shell out for medication for the rest of my life would cost me a small fortune, plus it helps for the migrane medication when i need it


I was started on 50mcgs but didn't feel any different, so have been put up to 75mcgs for the past two weeks, but still don't really feel any different. I read that this synthetic thyroxine doesn't work for everybody, which is a bit of a scary thought. Does it have to build up in your body over a number of months before it makes you feel any better? It makes you wonder how many years you have been walking around with a thyroid gland that is barely working without even knowing:eek:

[lifecatalyst]

Like Poppy the original problem that I went to the doctors about is still unresolved. I get a very strong fluttery feeling in my chest, it even wakes me up at night - sometimes think I am having a heart attack:eek: Could this be yet another symptom of the underactive thyroid? The doctor doesn't seem to think so, but I don't know.


I was diagnosed with an underactive thyroid a couple of years ago. I also get heart flutters/palpitations, but they diminish & almost disappear when my thyroxine is at the optimal level. My TSH level needs to be suppressed very low & now the endecronologist has instructed my GP to keep it at that level i feel much better. My thyroid is underactive due to autoimmune disease (Hashimoto's). The GP tested me for antibodies for Hashimoto's. My mum (age 77) was also diagnosed shortly after me & treatment has also resulted in her longstanding problem with high Cholesterol reducing with Thyroxine.

One of the best sources of information i found was Mary Shomon's site http://thyroid.about.com/cs/basics_starthere/a/thyroid101.htm I'd also highly recommend any of her books, especially Living Well With Hypothyroidism.

It took me a while to feel better on treatment & by then i'd read all the books, joined online groups, tried all the supplements & got other blood tests done as well as the usual TSH test.
~Linda~

[melbury]

Even though I have been on 75mcgs dose for a fortnight there is no improvement. Every night I wake up at least three times and I am absolutely freezing cold and my heart is thumping - is this a normal thing with underactive thryoid? I am getting to the point where I dread going to bed. When I saw the endocronologist he didn't think the heart flutters were anything to do with the thyroid, but I just don't know. I have looked on lots of sites and it does mention heart problems and thyroid problems together on quite a few.

[tweetyshells]

Palpatations can be cause either as a side effect of the thyroixine or for the fact your thyroid is underactive still.
They are linked.
I am getting really bad palpatations today and a few days ago. Due for my blood test now monday week so am hoping to get some answers then, as it doesnt feel right.
When i had my dose put up i was told to not to expect to start feeling any difference for at least 6 - 8 weeks. So those who have only taken for 2 weeks don't be disheartened it just takes time.

[melbury]

Palpatations can be cause either as a side effect of the thyroixine or for the fact your thyroid is underactive still.
They are linked.
I am getting really bad palpatations today and a few days ago. Due for my blood test now monday week so am hoping to get some answers then, as it doesnt feel right.
When i had my dose put up i was told to not to expect to start feeling any difference for at least 6 - 8 weeks. So those who have only taken for 2 weeks don't be disheartened it just takes time.


Thanks for the reassurance and hope your blood test goes well. Do your palpitations feel like fluttering all the time in your chest? Originally it was worse in the evening (after a meal) and at night, but now it is getting to be all the time.

As I posted earlier, it was because of heart palpitations that I originally went to the doctor. I suppose unless they specifically decide to test your thyroid function, any problems can go undetected for ages. I will try to be more patient waiting for the thyroxine to kick in, I have to go for another test in a couple of weeks and if my TSH level is still too high, I am going to be put up to 100mcgs.

[jeannieblue]

I don't have any thyroid problem, but have been keeping an eye on this thread as my sister does.

I'm just concerned for Melbury at the moment (no disrespect for anyone else). Being one who has had palpitations on and off for many many years for various reasons - stress caused alot of it. I was always lead to believe that palpitations kinda meant you had quite a healthy heart! Far from about to have a heart attack, which is what we all fear when its happening!

When those fluttery palpitations start, the panic rises, you get up, you don't know what to do with yourself, the panic makes it worse, its the early hours and you just feel so damn alone. You almost feel like its the end...

Its not Melbury, you are so normal. Its just that when they strike, its so often when you are your own and you feel isolated and scared.

Be proud that your heart can sound so strong!!! Don't lie there and suffer, get up, i often have a cuppa which is probably not the best thing (ie caffeine) settle back into bed with a 'nice' book and if I get any more sleep great. If not, I've had a nice read. Not easy if have to get up for work in the morning!

Hopefully, as the people that know, have said, the medication will settle in, you'll get the right dosage for you, and life will go on more smoothly. Meanwhile, go with the flow and be kind to yourself.

xxx

[tweetyshells]

When i get them regular like today then yes it was pretty much constant at times. But they were really strong for me, so much so i had trouble breathing.
I'm hoping they will calm down soon enough as today was really scary!

[jeannieblue]

I've been texting my sister about this, she is great, sadly not have a lap top to get comfy with and come on site! I've told her about MSE and hope that she will be contributing soon!

Meanwhile, she recommends very highly a book by Dr Barry Durrant-Peatfield, she says it is brilliant and the doctor is very 'forward thinking'. Not many around. After reading it, she says she felt very reassured.

Those palpitations are a right b*gger. I've had them on and off for more years than I care to mention! They are very scary, I found them worse at night because everyone else is asleep and you feel so alone.

They don't scare me so much now cos I'm used to them, but I do hate them during the night! Esp as have to get up for work!! I also found that when I had to have a hysterectomy and had to go a year and a bit without HRT, that I got them then and also night sweats. Unnerving. But supposedly natural!

My sister is also investigating remedies and such in the USA - sadly they are often more advanced and 'forward thinking' than over here.

I wish I could take your palpitations off you lot for a night or so to give you a break x x x

[jeannieblue]

Further info via text from sister............... :D

Dr Barry lists forty four symptoms and says thats not a comprehensive list!
You can get chest pain and palpitations, she's had both. It affects the chest muscles too so you can get a feeling of being breathless. You get tired but you can't sleep.

Well, think this book could be worth buying - lots of info, not necessarily rid you of the symptoms, but help you to realise that you're not alone, and its part of the blasted condition!

Hope some of this has been helpful x

[melbury]

Thanks so much for all of the information you have posted - it is very reassuring. As you say everything seems magnified at night when everyone else is asleep, it is so scary.

Have been reading loads today on the internet about Hashimotos / underactive thyroid. Seems that the synthetic thyroxine doesn't work for everyone, which is a bit depressing, will just have to wait and see. Apparently doctors are quite happy once they get you within the right parameters for TSH level even if you don't feel any better and I find that quite frightening.

Found a couple of sites that unreservedly recommend the natural porcine thyroid supplement - say it works much better - but I don't really know anything about it.

Thanks again,

[melbury]

Forgot to say, these are my latest blood test results, not very good reading:eek:
TSH 64.47
Free T4 3.6
Free T3 1.8
TPO Antibodies 235

:eek:

Does anybody understand what the TPO antibodies figure means?

Many thanks.

[jeannieblue]

I'm sooo hoping my sis gets online soon. I'd buy her a lap top if I could!

She has loads of info as she intends to 'beat this regardless' and she has been looking at sites in US. They seem so more forward thinking and less tied up in red tape than here!

Glad you are reassured, she still rates the book highly, it has helped her alot.

[cantcope]

I dont know what the readings mean but having been on 150mg of thyroxine for the last 8 years i wouldnt worry too much about your readings. The doctor will adjust your medication as he/she sees fit. It took me about a year to get on the correct dose and its only ever changed twice on the 8 years. (once when he mixed my results up with someone elses :eek:).

I found i suffered with depression for the first year or so quite badly but this seemed to clear once i felt better in myself, my weight dropped, i could stay awake more than a few hours and i stopped ripping my legs to pieces where they itched so much. years on I hardly ever notice any symptoms. I've only in the last 6 months felt very tired again and generally unwell but have just this month been diagnosed with MS so now i have both to contend with. I'm surprised i'm awake lol.

Stay strong and be comforted that you are not alone. This is relatively common and you will be surprised when you start talking about it how many people you know suffer with the condition. When i first found out there were 3 other women just in my office of about 50!

Feel free to pm if you want answers to any questions as this can affect so many things. Hopefully you will have ben given some literature (just dont scare yourself).

Best Wishes x

[noonesperfect]

I've gained a fair amount of weight, have dry skin, my nails are weaker than they were, I'm lethargic most of the time and often forgetful. I seem to feel the cold more, but can also boil up (though no obvious flush) in bed occasionally.
Mostly I sleep quite well, but can wake at 3am only to be up for the rest of the night. Or sleep for 9 hours (given the chance! usually wake after 7hrs though).
Just lately my heart has been fluttery and my pulse has been faster than usual for me (about an extra 15-20 bpm).
Everything in the "gynae" departmart working as it should, sorry if too much info.
Does that fit in with anyone else's symptoms?

[jeannieblue]

Meanhwile, off the subject of Mel - my thyroid is ok - I think - but if flick back a few posts you'll see why I've interferred on this one. My sister swears by the Dr Barry book which she says will sooooo help everyone - bound to be on Amazon, tho I've not looked :o

back to some fun with MrsE on the sun one.... :D

[cantcope]

Hi "Noonesperfect". yes they do sound like some of the symptoms (that i had) although they could be caused by any number of things. I slept for over 20 hours at a time and went from a size 8 to a 16 in less than a year. My skin was so dry i scratched it off in my sleep until i bled. My hair thinned dramatically and my periods were very very heavy. I thought it was normal to wear a jumper in the summertime. However, i now rarely suffer with any of this and my weight is stable.
A simple blood test will put your mind at rest.

[TomsMom]

Found a couple of sites that unreservedly recommend the natural porcine thyroid supplement - say it works much better - but I don't really know anything about it.



Natural porcine thyroid supplement (piggy pills!) - Armour Thyroid or Thyroid USP. From USA. It is a combination of T4 and T3 made from pigs' thyroid, fairly close to the human ratio of T4 : T3.

Natural thyroid was successfully used to treat thyroid problems long before synthetic thyroxine was invented.

Most NHS GP will not prescribe this, preferring the tried and trusted route of synthetic thyroxine. Some GPs who "think outside the box" when patients don't do well on thyroxine may be willing to prescribe it.

If you want to read about it you can google it or I have some links but it is best if you give thyroxine a chance to see if it works for you, it works for the majority of people. Most people can make T3 from the T4 (synthetic thyroxine) they take. A few people find their bodies do not make this conversion. That is when the addition of T3 or changing to Armour Thyroid can help.

To be within "normal" limits:

TSH 64.47 - needs to be below 5 (normal range roughly 0.27-4.20)
Free T4 3.6 - needs to be up to at least 11.8 (normal range roughly 11.8-24.6)
Free T3 1.8 - needs to be up to at least 2.8 (normal range roughly 2.8-7.1)

Everybody is an individual so we each feel best at different points within the ranges but "most" people feel best with a TSH of <2, FT4 in the upper quartile (around 19/20) and FT3 in balance with FT4. Some people only feel really well with FT4 at top of range and TSH suppressed whereas some people feel fine with results in the middle of the range.

[lifecatalyst]

Forgot to say, these are my latest blood test results, not very good reading:eek:
TSH 64.47
Free T4 3.6
Free T3 1.8
TPO Antibodies 235

:eek:

Does anybody understand what the TPO antibodies figure means?

Many thanks.

Melbury, i can't find a reference range for TPO antibodies but the reference ranges for other Thyroid blood tests (copied from www.thyroiduk.org (http://www.thyroiduk.org)) are
-----------------------------------------------

TSH = THYROID STIMULATING HORMONE
This hormone comes from the pituitary to stimulate the thyroid gland into making more hormone. TSH rises when the thyroid is struggling.
The approx. reference range for this test is 0.4 to 4.5.

TT4 = TOTAL T4
Thyroid hormones bound to proteins. TT4 lowers when the thyroid is struggling.
The approx. reference range for this test is 50 to 160.

FT4 = FREE T4
Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.
The approx. reference range for this test is 10 to 24

FT3 = FREE T3
T4 converts to T3 and is the only thyroid hormone actually used by the body’s cells.
The approx. reference range for Free T3 is 4 to 8.3

-------------------

Hope this helps :) It does take time to feel better, i'm told increases in Thyroxine take a month or two to show up on blood tests & it's usual to increase dosage gradually.

It might be worth joining one of the specialist Thyroid forums - i found these very helpful at the beginning. Also it's worth keeping in mind that the people who feel fine on treatment won't often be found on these forums, so on reading them it's easy to believe that everyone is struggling!
L :o

[juno]

I was diagnosed with an underactive thyroid about 6 months ago, and I'm on levothyroxine. Initially I started to feel better, but now I feel as bad as before. I had blood tests recently though, and they said they were fine. :(

[noonesperfect]

Does the likelihood increase as you age?

[cantcope]

No idea. I was 25 when i was diagnosed. but had been having symptoms for years before that. Had always felt cold and i have vitiligo (white patches that have got worse over time) over my body which specialist said is a symptom of underactive thyroid. I've had that since i was about 15.

[lifecatalyst]

I was diagnosed with an underactive thyroid about 6 months ago, and I'm on levothyroxine. Initially I started to feel better, but now I feel as bad as before. I had blood tests recently though, and they said they were fine. :(

Juno, i always ask for the actual results, as i've previously been told the same....results fine; but I didn't feel OK! When I asked for the actual figures my TSH was at the high end of the normal range. Now my TSH is below 1 i feel normal again (& my brain fog has improved greatly!).

My mum had the same thing happen last week, one doctor said she was fine (TSH at 4) & he wanted to wait 3 months before testing again. When she saw another GP in the practice her Thyroxine was put up by 25 to 75 daily. She's been feeling bad for a few months, freezing cold, tired & unwell.
Lx

ps I also highly recommend the Dr.Barry book.... & would have sought a consultation with him had my thryoid not been sorted. With all the info I was able to ask for the extra blood tests & understand what the results meant!

[I love Airedales]

Hello, I am retaining water and feeling very uncomfortable. Is this a common side effect? Will it go when my meds are sorted? I have put on a stone and a half!!!!
I am finding this thread very helpful it is good to know I am not alone, thank you everyone for the reassurance offered.
Take care all, ILA

[poppy_f1]

Hello, I am retaining water and feeling very uncomfortable. Is this a common side effect? Will it go when my meds are sorted? I have put on a stone and a half!!!!
I am finding this thread very helpful it is good to know I am not alone, thank you everyone for the reassurance offered.
Take care all, ILA


i have to say im the opposite, i always needed to go to the loo a lot as it was but now its even more
been on my meds for nearly 3 weeks now and not noticed any difference in my weight, but im going back soon for my repeat bloods so hopefully once all my meds is sorted things will be a bit better

[TomsMom]

been on my meds for nearly 3 weeks now and not noticed any difference in my weight, but im going back soon for my repeat bloods so hopefully once all my meds is sorted things will be a bit better


Be patient Poppy. It takes a while. You should have been started on a low dose of thyroxine and depending on blood test results your GP will increase your dose gradually - you can't go on a whopping big dose straight away, it will cause problems. Once your test results have stabilised and you feel better (and make sure you tell your GP how you feel. If he says your results are now "normal" and you don't feel right then let him know so that he can tweak your meds until you do feel right) things will start to fall back into place - your weight should start to reduce, your energy should start to come back, hair and skin should start to get back to normal. But it all takes time, you're looking at months rather than weeks.

[melbury]

Be patient Poppy. It takes a while. You should have been started on a low dose of thyroxine and depending on blood test results your GP will increase your dose gradually - you can't go on a whopping big dose straight away, it will cause problems. Once your test results have stabilised and you feel better (and make sure you tell your GP how you feel. If he says your results are now "normal" and you don't feel right then let him know so that he can tweak your meds until you do feel right) things will start to fall back into place - your weight should start to reduce, your energy should start to come back, hair and skin should start to get back to normal. But it all takes time, you're looking at months rather than weeks.


Thanks for sounding so calm and reassuring - it makes me feel much more confident that the thyroxine will start working properly and I will feel normal again.

[tweetyshells]

Melbury when i originally made this post i was feeling crap but i am feeling MUCH better than i was now so you will in time too.
I got my blood test monday to see where we are with it.

[gemold]

I was diagnosed with hashimoto’s 4yrs ago ad have felt up and down but generally rotten for 3.5yrs. I was diagnosed from bloods and an fna on an egg sized lump that appeared early in my 2nd pregnancy. I was permanently tired, sleeping whenever I could failed to lose much of my baby weight once my baby was born had very dry skin and felt flat but it was put down to my pregnancy/2 young children – my eldest was only just 2 when the second was born – and my job – pe teacher
To cut a long story short – After my son was born I was monitored and told my levels were normal. Quickly the feelings became my norm because that was what the docs were telling me and I accepted their reasons. I was pregnant with my 3rd before my 2nd was 12mths but things went further downhill for me then.
I was told my levels were still ‘ok’ and it was the 3 quick successive pregnancies, my hormones and my job that were the problem. They told me to get more support from my family, consider a career change and manage my time better. I have an incredible family and support, and the other two notions were ridiculous.
When my daughter was born I was physically drained and never recovered from the pregnancy and birth. I never lost the baby weight, developed excema, had painful stiff joints, lacked motivation and interest in anything, palpitations, sadness, irritable… oh those days. I spent weekends recovering from work there were days that even getting dressed was a chore and I’d watch my children play from the couch – I loved my children dearly but had no ‘will’ or energy to play with them. I was diagnosed with pnd, prescribed anti-d’s and cbt.
Something clicked and made me angry enough to dare to challenge this diagnosis and went for an appointment with my endocrinologist. They scanned and did a 3rd biopsy and the results were an increase in size and some suspicious acting cells.
Within 2mths the lump and half my thyroid were removed and bloods 3mths later had me put on 50mgs. I felt no change. 3mths later after bloods I was upped to 100mgs.
It’s as simple as this – I remember who I used to be and I enjoy my children, my job and my life – I have energy to give to things not just to keep me on my feet.

Recent reading shows me that my ‘ok’ results were obviously not ok for me – we’re all different and one person’s norm is another’s high or another’s low. It’s known to be appropriate to treat the person and deal with their wellbeing and have blood levels as support – not the other way around
I feel very let down by my gp and consultant. But tough – get on with it.
My learning curve and my resolve is to always trust my body and my instincts and to never allow a result to be ‘ok’ if I feel the slightest bit uneasy and unwell. If I feel unwell I will seek help and if it’s not forthcoming I will ask for another opinion.
Good luck to any thyroid newbees and feel well again soon – you will with the right treatment and care.

I’ve just read this back – sorry. It’s probably the first time I’ve said a little of how I felt. Thanks for all the positive statements, reassurance and the chance to share.
:T :D

[pattycake]

I was diagnosed as hypothyroid three years ago and my dose of Thyroxine has slowly increased from the initial 50mcg to 112.5mcg per day now. I take 100 on one day and 125 the next. This is because the results stated I was "overmedicated" when I took 125mcg each day.

I got my blood tested last October because I knew my levels were wrong. Sure enough, the tests came back that I needed a higher dose. That was when I was increased to 125. After 2 months, I was tested again and reduced to my present level. However, in myself I do not feel too great. I am ALWAYS cold except when I get hot sweats and the horrible palpitations.

My initial diagnosis was made after I went to the doctor's complaining of palpitations. The doctor suspected I was HYPERthyroid and that was why I was tested but obviously that was not the case. I wore a heart monitor for 24 hours and have been told I have ectopic heart beats. It can be very disconcerting when your heart seems to jump and then race.

[melbury]

I was diagnosed as hypothyroid three years ago and my dose of Thyroxine has slowly increased from the initial 50mcg to 112.5mcg per day now. I take 100 on one day and 125 the next. This is because the results stated I was "overmedicated" when I took 125mcg each day.

I got my blood tested last October because I knew my levels were wrong. Sure enough, the tests came back that I needed a higher dose. That was when I was increased to 125. After 2 months, I was tested again and reduced to my present level. However, in myself I do not feel too great. I am ALWAYS cold except when I get hot sweats and the horrible palpitations.

My initial diagnosis was made after I went to the doctor's complaining of palpitations. The doctor suspected I was HYPERthyroid and that was why I was tested but obviously that was not the case. I wore a heart monitor for 24 hours and have been told I have ectopic heart beats. It can be very disconcerting when your heart seems to jump and then race.


I have just had a 24 hour heart monitor test this week, but don't know the result yet. This was why I went to the doctor initially because I thought I was going to have a heart attack, but blood tests came back showing the bad thyroid results and that has been the main area of concern since. Neither the doctor or endocronologist seemed to think the heart palpitations were in any way associated with the under active thyroid, but I have read about loads of people on here that have that. This is the reason why I was sent to a cardiologist for the heart test.

My thyroxine has been upped from 50mcgs initially to 75mcgs - can't say I feel any better really. I do notice that I get hot turns now - especially at night - and my knee joints feel stiff in the morning.

It's all very confusing - there is probably too much information to read! My 25mcgs tablets are a different brand to my 50mcgs tablets and some people seem to think that this can have an affect on how they work, but what can you do? If that is what is put up in your prescription you can hardly stand there and argue with the pharmacist. First time I was prescribed Eltroxin, now I am just on Levothyroxine made by a company called Alpharma and the smaller dose tablets are made by a company called Goldshield. In a couple of weeks when I have had another blood test they may put me up to 100mcgs per day.

How do you know if you are being over-medicated? I don't want to develop osteoporosis:eek: :eek:

I am just hoping that they will get it right soon and the thyroxine will work for me. Must admit I don't really fancy the piggy pills.

Thanks for all the information and advice.

[melbury]

I was diagnosed with hashimoto’s 4yrs ago ad have felt up and down but generally rotten for 3.5yrs. I was diagnosed from bloods and an fna on an egg sized lump that appeared early in my 2nd pregnancy. I was permanently tired, sleeping whenever I could failed to lose much of my baby weight once my baby was born had very dry skin and felt flat but it was put down to my pregnancy/2 young children – my eldest was only just 2 when the second was born – and my job – pe teacher
To cut a long story short – After my son was born I was monitored and told my levels were normal. Quickly the feelings became my norm because that was what the docs were telling me and I accepted their reasons. I was pregnant with my 3rd before my 2nd was 12mths but things went further downhill for me then.
I was told my levels were still ‘ok’ and it was the 3 quick successive pregnancies, my hormones and my job that were the problem. They told me to get more support from my family, consider a career change and manage my time better. I have an incredible family and support, and the other two notions were ridiculous.
When my daughter was born I was physically drained and never recovered from the pregnancy and birth. I never lost the baby weight, developed excema, had painful stiff joints, lacked motivation and interest in anything, palpitations, sadness, irritable… oh those days. I spent weekends recovering from work there were days that even getting dressed was a chore and I’d watch my children play from the couch – I loved my children dearly but had no ‘will’ or energy to play with them. I was diagnosed with pnd, prescribed anti-d’s and cbt.
Something clicked and made me angry enough to dare to challenge this diagnosis and went for an appointment with my endocrinologist. They scanned and did a 3rd biopsy and the results were an increase in size and some suspicious acting cells.
Within 2mths the lump and half my thyroid were removed and bloods 3mths later had me put on 50mgs. I felt no change. 3mths later after bloods I was upped to 100mgs.
It’s as simple as this – I remember who I used to be and I enjoy my children, my job and my life – I have energy to give to things not just to keep me on my feet.

Recent reading shows me that my ‘ok’ results were obviously not ok for me – we’re all different and one person’s norm is another’s high or another’s low. It’s known to be appropriate to treat the person and deal with their wellbeing and have blood levels as support – not the other way around
I feel very let down by my gp and consultant. But tough – get on with it.
My learning curve and my resolve is to always trust my body and my instincts and to never allow a result to be ‘ok’ if I feel the slightest bit uneasy and unwell. If I feel unwell I will seek help and if it’s not forthcoming I will ask for another opinion.
Good luck to any thyroid newbees and feel well again soon – you will with the right treatment and care.

I’ve just read this back – sorry. It’s probably the first time I’ve said a little of how I felt. Thanks for all the positive statements, reassurance and the chance to share.
:T :D



So glad that you got there in the end, but sorry that you had to suffer for so long before being properly diagnosed. It is so frustrating when you know that there is something wrong, but the doctors just don't seem to believe you and think you are just being paranoid.

Are you just taking the usual synthetic thyroxine? From what everyone says it all seems to hinge on getting the dosage exactly right, but are the doctors willing to keep on doing blood tests and do those results actually mean you feel better.

[gemold]

I’m on Levothyroxine – that’s the synthetic, the synthetic one yes? Must say(oink) though :rotfl: – the whole piggy pill thing wouldn’t bother me as I have a piggy ligament in my ankle after a bad netball injury!

My aunt (through marriage so no genetic link) is hypothyroid and is normally on 175mgs. She’s self medicated for the last 8 years – she has a choice of 3 tabs, 50, 75, 100mgs. She has had problems with swinging in how she feels and her results quite randomly and no reason has been found. As she is only due to now see our endocrinologist (same dude – pants with me but awesome with her…?...mad) every 12mths, he has given her 3 different prescriptions and with his blessing, she adjusts her own meds depending on how she feels.

I’ve not heard from my gp since my last bloods late feb – but the after the bloods in early dec it took a month for them to send me the scrip changing me from 50 to 100mgs – hey ho it never ends – maybe I should change surgeries…

I don’t know anything about the different brands and how they may interact, sorry.

I’ve had palpitations and ‘thuds’ for about 6yrs and was initially checked and told I had an irregular heart beat. Not sure how exact my experience is but I know that my palpitations were fairly regular, evenings mainly and often once laid down in bed. They’d be so powerful they would wake me up and my husband could see my chest jump. Pretty scarey sometimes but another thing that becomes your norm. Since my meds started, especially since mid Jan with the 100mgs, they’ve almost disappeared.
Where as a few years ago I would sleep in a t-shirt I’m still sleeping in full pjs plus a jumper and 2 blankets on top of the duvet with my hubby complaining of the sweats but at least I feel human during the day.
At the mo I’m thankful for the changes - i've lost 1st10lbs with no diet changes since nov - and not really thinking of the things that aren’t changing – EG the cold nights fixed with blankets and my skin’s still pretty dry but is fixed with presc. creams.

:confused: Only thing I don’t really know is when my next bloods will be – another daft thing that I’ve grown to accept from my gp…

All the best with your levels and drugs!:D

(I can't half rabbit.:eek: )

[gemold]

I have just had a 24 hour heart monitor test this week, but don't know the result yet. This was why I went to the doctor initially because I thought I was going to have a heart attack, but blood tests came back showing the bad thyroid results and that has been the main area of concern since. Neither the doctor or endocronologist seemed to think the heart palpitations were in any way associated with the under active thyroid, but I have read about loads of people on here that have that. This is the reason why I was sent to a cardiologist for the heart test.

My thyroxine has been upped from 50mcgs initially to 75mcgs - can't say I feel any better really. I do notice that I get hot turns now - especially at night - and my knee joints feel stiff in the morning.

It's all very confusing - there is probably too much information to read! My 25mcgs tablets are a different brand to my 50mcgs tablets and some people seem to think that this can have an affect on how they work, but what can you do? If that is what is put up in your prescription you can hardly stand there and argue with the pharmacist. First time I was prescribed Eltroxin, now I am just on Levothyroxine made by a company called Alpharma and the smaller dose tablets are made by a company called Goldshield. In a couple of weeks when I have had another blood test they may put me up to 100mcgs per day.

How do you know if you are being over-medicated? I don't want to develop osteoporosis:eek: :eek:

I am just hoping that they will get it right soon and the thyroxine will work for me. Must admit I don't really fancy the piggy pills.

Thanks for all the information and advice.

I take calcium supplements as when I had half my thyroid removed they warned me about damage to the surrounding parathyroid glands which is where calcium is processed (or something).
Just incase I take supplements - I've not been checked but I feel better for doing it. I'm also hoping my constant steady level of exercise in my job - which I can again cope with - is also helping:j

[gemold]

I've gained a fair amount of weight, have dry skin, my nails are weaker than they were, I'm lethargic most of the time and often forgetful. I seem to feel the cold more, but can also boil up (though no obvious flush) in bed occasionally.
Mostly I sleep quite well, but can wake at 3am only to be up for the rest of the night. Or sleep for 9 hours (given the chance! usually wake after 7hrs though).
Just lately my heart has been fluttery and my pulse has been faster than usual for me (about an extra 15-20 bpm).
Everything in the "gynae" departmart working as it should, sorry if too much info.
Does that fit in with anyone else's symptoms?

It's not daft to mention gynae stuff - maybe too much info for some :eek: but it defo has an impact on your life.
I had dry skin 'all over' :o and couldn't wear thongs as they'd literally stick, I found sex painfully difficult and my periods would last for 2 weeks as I'd be spotting either side for a good 4/5 days. Since my meds (0-50-now100mgs) my periods are back to my usual 5 days and the 'business' is soooo much better and more normal and I can wear whatever knickers my outfit requires - yes I even have the energy and will to get dressed up need fancy knickers!

[pattycake]

Gemgold, the day I stop caring about VPL (visible panty line) and going out with mascara and lipstick, it will be time to nail me into my box!!!! My mother is 83 and she still goes out looking really smart even if it is only to the supermarket. She does not like to be seen in the same outfit twice. It must be in the genes. Her thyroid is fine though.

Regarding the different brands of levothyroxine. I cannot see how it would make any difference whatsover. The brands are what is known as "generic". They all have to be produced under licence and to the exact same standard. My husband is a chemist (not a pharmacist) and he works in regulatory for generic pharmaceutical companies.

[melbury]

Gemgold, the day I stop caring about VPL (visible panty line) and going out with mascara and lipstick, it will be time to nail me into my box!!!! My mother is 83 and she still goes out looking really smart even if it is only to the supermarket. She does not like to be seen in the same outfit twice. It must be in the genes. Her thyroid is fine though.

Regarding the different brands of levothyroxine. I cannot see how it would make any difference whatsover. The brands are what is known as "generic". They all have to be produced under licence and to the exact same standard. My husband is a chemist (not a pharmacist) and he works in regulatory for generic pharmaceutical companies.

Thanks for the information, I personally don't see that different brands can make that much difference. I am sure it is a case of the more you read the more worried you get. Also a lot of the information is on US sites and they do tend to be a little OTT with things.

How long did it take you to get to the optimum dosage of levothyroxine? This seems to be the critical thing with everybody and it seems to vary so much.

[pattycake]

My dose has steadily risen over the last three years since diagnosis. Usually seems to be about a year before I need an increase. As I have said before I am now on 112.5mgm a day. (100/125 alternate days - a pain).

Whenever I have had a change, my GP usually wants me to be re-tested after 2 months which I assume is how long it takes to regulate. HTH.

[mazza245]

My whole family is riddled with thyroid problems (mother, brother, aunts, nieces and cousins) and it was no surprise that I too was found to have an underactive thyroid 20 years ago. After trial and error, I have settled down and take 125 mg per day. However, I still feel very cold most of the time, quite run down and tired all the time, very very dry skin, outside and in (!), constipated and all those sorts of symptoms you probably all have as well. I have had a cold, cough, cystitis, a cold again and a cough again, all since New Year and am feeling very fed up and sorry for myself. I was talking to a cousin who is on tablets and she said that she's been told that when you are hypothyroidic your immune system is a bit compromised and so is difficult to build up. That makes sense as I have tried to build mine up but it just doesn't seem to respond, despite a good diet etc.

I finally went to the doctors last week and got some antibiotics but thanks to reading threads like this and looking on other sites, I had the courage to ask about getting some medication for my T3 as well as my T4. Instead of dismissing me, he actually took me seriously and said he had some other patients who swore by taking the two kinds and he issued me with a prescription. I can't get the tablets until tomorrow but he said if they did make me feel better, they would work quite quickly! I feel very buoyed up by this, as if there is light at the end of the tunnel and I might start to feel better soon! By the way, this is only because I have been on this therapy for so long and have well and truly tried just the straightforward tablets for long enough. For those of you who have only just been diagnosed, I don't suppose it would be any good for you to ask about these until you have stabilised on the normal tablets which have made me feel fine until just recently. I am convinced that my daughter needs treatment but she has been told her levels are fine, despite all the usual symptoms including overwhelming tiredness.

[melbury]

My whole family is riddled with thyroid problems (mother, brother, aunts, nieces and cousins) and it was no surprise that I too was found to have an underactive thyroid 20 years ago. After trial and error, I have settled down and take 125 mg per day. However, I still feel very cold most of the time, quite run down and tired all the time, very very dry skin, outside and in (!), constipated and all those sorts of symptoms you probably all have as well. I have had a cold, cough, cystitis, a cold again and a cough again, all since New Year and am feeling very fed up and sorry for myself. I was talking to a cousin who is on tablets and she said that she's been told that when you are hypothyroidic your immune system is a bit compromised and so is difficult to build up. That makes sense as I have tried to build mine up but it just doesn't seem to respond, despite a good diet etc.

I finally went to the doctors last week and got some antibiotics but thanks to reading threads like this and looking on other sites, I had the courage to ask about getting some medication for my T3 as well as my T4. Instead of dismissing me, he actually took me seriously and said he had some other patients who swore by taking the two kinds and he issued me with a prescription. I can't get the tablets until tomorrow but he said if they did make me feel better, they would work quite quickly! I feel very buoyed up by this, as if there is light at the end of the tunnel and I might start to feel better soon! By the way, this is only because I have been on this therapy for so long and have well and truly tried just the straightforward tablets for long enough. For those of you who have only just been diagnosed, I don't suppose it would be any good for you to ask about these until you have stabilised on the normal tablets which have made me feel fine until just recently. I am convinced that my daughter needs treatment but she has been told her levels are fine, despite all the usual symptoms including overwhelming tiredness.

What a terrible time you have had. Hope that the new tablets work for you and make you feel better. Please let us know how you get on and if they do work - we may all need them!

[melbury]

Can the thyroxine tablets throw you into menopause? Since being on this medication I have terrible nights - wake up really hot and sweaty and have to kick the duvet off. Also get pain in my knee, elbows and wrists - really stiff and achy in the morning. Think I am falling apart! Does anyone else get this?

[TomsMom]

Can the thyroxine tablets throw you into menopause? Since being on this medication I have terrible nights - wake up really hot and sweaty and have to kick the duvet off. Also get pain in my knee, elbows and wrists - really stiff and achy in the morning. Think I am falling apart! Does anyone else get this?


I don't think so. Considering I started on thyroxine aged 27 and went into menopause around age 54 it certainly didn't start mine off early!

[LadyMorticia]

I don't have it (not that I know of anyway as my depression isn't caused by a physical problem) but my mum and nan both have it. They don't get depression with it though but they are both on tablets for life. They're not anti-depressants though. They're some other kind of tablet to help control it. :)

xx

[melbury]

I don't think so. Considering I started on thyroxine aged 27 and went into menopause around age 54 it certainly didn't start mine off early!

May I ask which brand of thyroxine you take? There is a lot of talk that the generic make of levothyroxine is not as good as the branded thyroxine, also that it is not good to take different brands. For example, I am on one brand for my 25mcgs tablet and a different brand for my 50mcgs tablet. Would appreciate your opinion on this. Is there a best brand of thyroxine?

Thanks.

[I love Airedales]

Melbury I get stiff and aching joints too. I get pain in my finget tips about the last1/4 of my fingers and my skin seems flushed. The worst thing is the memory - or lack of it!!
I am having a bloodtest on the 8th so maybe have my tablets altered. I feel my dose is slightly high feel a bit light headed, spaced out.
Take care all nice to know we are not alone.
ILA

[TomsMom]

May I ask which brand of thyroxine you take? There is a lot of talk that the generic make of levothyroxine is not as good as the branded thyroxine, also that it is not good to take different brands. For example, I am on one brand for my 25mcgs tablet and a different brand for my 50mcgs tablet. Would appreciate your opinion on this. Is there a best brand of thyroxine?

Thanks.

I take Eltroxin, I requested it and it is now on my prescription so the pharmacist can only dispense that brand.

I think the jury will always be out over the branded/generic discussion. Some will say there's no difference, but try convincing the people who don't do well on Brand X but feel much better on Brand Y.

First of all, everyone is different so we all react differently. Some people are diagnosed hypothyroid, get prescribed thyroxine, doctors repeat tests and alter dose until doctor is happy with results and patient feels OK. That's the classic text book case which everyone hopes is them and it seems to work for a good majority of thyroid patients.

Then you get someone who gets diagnosed, prescribed thyroxine, doctors repeat tests and alter dose until he is happy with results but the patient still feels cr*p. Some doctors will work with the patient by tweaking dose until he/she feels OK. Some doctors will say "Well your blood tests say you're fine so you must be, your symptoms are nothing to do with your thyroid, go away and exercise/diet/think happy thoughts or whatever. None of us want a doctor like that.

Likewise, some people are given a prescription which says "thyroxine" and the pharmacist (under NHS rules I believe) must dispense whichever brand he can obtain cheapest, usually the generic form. The majority of patients are fine whichever brand they take.

Unfortunately, some people react differently to different brands. Although they basically are the same, i.e. have to contain X amount of levothyroxine, but it's the other ingredients that can vary and this is where people can possibly have a problem. e.g.

TEVA - The 50mcg and 100 mcg tablet ingredients are: Levothyroxine Sodium BP, Lactose, Dextrin, Maize Starch, Magnesium Stearate

Teva 25mcg tablets - these are actually manufactured by Custom Pharmaceuticals. The ingredients in these Anhydrous Levothyroxine Sodium, Sodium Citrate, Lactose, Maize Starch, Acacia Powder, Magnesium Stearate.

ACTAVIS - The 50mcg and 100mcg tablet ingredients are listed as: Levothyroxine Sodium, Lactose, Magnesium Stearate, Maize Starch, Stearic Acid

IVAX - The 50 mcg tablets distributed by IVAX are manufactured by Custom Pharmaceuticals for Goldshield Pharmaceuticals Ltd. Ingredients are: Levothyroxine Sodium BP, Sodium Citrate, Lactose, Maize starch, Powdered Acacia, Magnesium Stearate, Purified water.

ELTROXIN (Goldshield) - (Brand) Thyroxine Sodium BP, Sodium Citrate, Lactose, Maize starch, Powdered Acacia, Magnesium Stearate, Purified water.

APS (Approved Prescription Services) - (Generic) Active ingredient: Thyroxine Sodium BP, lactose, dextrin, maize starch and magnesium stearate.

CP PHARMACEUTICALS Ltd. - (Generic) Thyroxine Sodium BP, lactose, sucrose (fine powder), maize starch, and magnesium stearate.

COX PHARMACEUTICALS (also ALPHARMA) - (Generic) Thyroxine Sodium Lactose, magnesium stearate, maize starch, stearic acid.

So a very subtle difference in some. Dextrin is used in some but not all. Also sodium citrate, stearic acid and powdered acacia. So if a patient doesn't do well on one type then it would be worth suggesting your doctor "names" another one to try. Or if you are given a different type with your next prescription keep a diary to see if anything changes, then if you feel you are better on one type then you can ask your doctor to make sure you get it each time by naming it on the prescription.

By the way, if a patient is lactose intolerant it is possible to get lactose free thyroxine.

In the vast majority of cases a patient does well on any thyroxine, a few people feel they do better on a certain brand, and a small minority may need the addition of T3 or may need the natural thyroid (Armour) but it's not easy to get that on prescription as most doctors think that synthetic thyroxine is the only answer.

There is a lot of information on http://www.thyroiduk.org with some interesting information about certain foods and drugs that can be problematic if you are hypothyroid including valium, asprin, betablockers, medicines and multivit/mineral tablets containing iodine, even Prempack HRT (go to Treatment>Problem drugs and Foods)

But most of all Melbury, give yourself time, taking thyroxine is not like taking paracetamol for a headache (virtually instant results), your thyroid has either stopped working or is not working efficiently and has been like that for some time for it to show up in symptoms and blood tests. It will take time for your levels to get back to normal, as I said in an earlier post it could take a few months of gradual increases in your meds. Be patient and I am sure you will be one of the majority and you will stabilise on thyroxine soon and without further problems.

[melbury]

I take Eltroxin, I requested it and it is now on my prescription so the pharmacist can only dispense that brand.

I think the jury will always be out over the branded/generic discussion. Some will say there's no difference, but try convincing the people who don't do well on Brand X but feel much better on Brand Y.

First of all, everyone is different so we all react differently. Some people are diagnosed hypothyroid, get prescribed thyroxine, doctors repeat tests and alter dose until doctor is happy with results and patient feels OK. That's the classic text book case which everyone hopes is them and it seems to work for a good majority of thyroid patients.

Then you get someone who gets diagnosed, prescribed thyroxine, doctors repeat tests and alter dose until he is happy with results but the patient still feels cr*p. Some doctors will work with the patient by tweaking dose until he/she feels OK. Some doctors will say "Well your blood tests say you're fine so you must be, your symptoms are nothing to do with your thyroid, go away and exercise/diet/think happy thoughts or whatever. None of us want a doctor like that.

Likewise, some people are given a prescription which says "thyroxine" and the pharmacist (under NHS rules I believe) must dispense whichever brand he can obtain cheapest, usually the generic form. The majority of patients are fine whichever brand they take.

Unfortunately, some people react differently to different brands. Although they basically are the same, i.e. have to contain X amount of levothyroxine, but it's the other ingredients that can vary and this is where people can possibly have a problem. e.g.

TEVA - The 50mcg and 100 mcg tablet ingredients are: Levothyroxine Sodium BP, Lactose, Dextrin, Maize Starch, Magnesium Stearate

Teva 25mcg tablets - these are actually manufactured by Custom Pharmaceuticals. The ingredients in these Anhydrous Levothyroxine Sodium, Sodium Citrate, Lactose, Maize Starch, Acacia Powder, Magnesium Stearate.

ACTAVIS - The 50mcg and 100mcg tablet ingredients are listed as: Levothyroxine Sodium, Lactose, Magnesium Stearate, Maize Starch, Stearic Acid

IVAX - The 50 mcg tablets distributed by IVAX are manufactured by Custom Pharmaceuticals for Goldshield Pharmaceuticals Ltd. Ingredients are: Levothyroxine Sodium BP, Sodium Citrate, Lactose, Maize starch, Powdered Acacia, Magnesium Stearate, Purified water.

ELTROXIN (Goldshield) - (Brand) Thyroxine Sodium BP, Sodium Citrate, Lactose, Maize starch, Powdered Acacia, Magnesium Stearate, Purified water.

APS (Approved Prescription Services) - (Generic) Active ingredient: Thyroxine Sodium BP, lactose, dextrin, maize starch and magnesium stearate.

CP PHARMACEUTICALS Ltd. - (Generic) Thyroxine Sodium BP, lactose, sucrose (fine powder), maize starch, and magnesium stearate.

COX PHARMACEUTICALS (also ALPHARMA) - (Generic) Thyroxine Sodium Lactose, magnesium stearate, maize starch, stearic acid.

So a very subtle difference in some. Dextrin is used in some but not all. Also sodium citrate, stearic acid and powdered acacia. So if a patient doesn't do well on one type then it would be worth suggesting your doctor "names" another one to try. Or if you are given a different type with your next prescription keep a diary to see if anything changes, then if you feel you are better on one type then you can ask your doctor to make sure you get it each time by naming it on the prescription.

By the way, if a patient is lactose intolerant it is possible to get lactose free thyroxine.

In the vast majority of cases a patient does well on any thyroxine, a few people feel they do better on a certain brand, and a small minority may need the addition of T3 or may need the natural thyroid (Armour) but it's not easy to get that on prescription as most doctors think that synthetic thyroxine is the only answer.

There is a lot of information on http://www.thyroiduk.org with some interesting information about certain foods and drugs that can be problematic if you are hypothyroid including valium, asprin, betablockers, medicines and multivit/mineral tablets containing iodine, even Prempack HRT (go to Treatment>Problem drugs and Foods)

But most of all Melbury, give yourself time, taking thyroxine is not like taking paracetamol for a headache (virtually instant results), your thyroid has either stopped working or is not working efficiently and has been like that for some time for it to show up in symptoms and blood tests. It will take time for your levels to get back to normal, as I said in an earlier post it could take a few months of gradual increases in your meds. Be patient and I am sure you will be one of the majority and you will stabilise on thyroxine soon and without further problems.

Thanks so much for your post, crammed full of really helpful information. I think I will ask my GP to ensure that I get Eltroxin rather than the generic tablets. I was given Eltroxin initially for a month and I am sure I didn't have all of these side effects - the sweating and aching. I wonder if he will comply, or if he will say it's just nonsense and there is no difference! Is there anything I can do if he refuses?

As you said, I might have had a dodgy thyroid for years as I have never been tested for this before. That is reassuring to know that it can take months for the thyroxin levels to build up again and make the symptoms disappear. What happens to the antibodies though, do they disappear as well and stop attacking?

I have still not been told exactly what the cause of my problems was, but with a TPO antibody reading of 234, I am assuming it is Hashimotos disease, however have not actually been told this by my GP or the endo that I saw.

Thanks again.

[melbury]

I have just been reading about the fact that the FDA in the U.S. were considering banning Synthroid because after 40 years it didn't seem to be working that well and could in fact be dangerous:eek: :eek:

I find this very worrying, is there no alternative to this synthetic thyroxine?

Doctors just seem to take the attitude that taking this pill everyday will be an instant cure.

Conversely though there must be millions of people taking it that do get some benefit - hopefully!

[TomsMom]

I have just been reading about the fact that the FDA in the U.S. were considering banning Synthroid because after 40 years it didn't seem to be working that well and could in fact be dangerous:eek: :eek:


Don't worry about Synthroid. We don't get that brand here. If there was anything wrong with our thyroxine we would have heard about it by now, our synthetic thyroxine has been around since the 1960s.

I find this very worrying, is there no alternative to this synthetic thyroxine?

Yes, the alternative is the piggy pills I mentioned. Doctors wont consider this unless they are convinced you can't get better on thyroxine and then it's only a few doctors. And it is hard to find an NHS doctor who is willing to prescribe it. You can get it from a private doctor but, of course, you will have to pay for it via that route.

Doctors just seem to take the attitude that taking this pill everyday will be an instant cure.

A lot of doctors do but hopefully you've got a doctor who will take your symptoms into account as well as the blood test results.

Conversely though there must be millions of people taking it that do get some benefit - hopefully!

Yes there are, you don't hear about them because they are doing well and have no problems.

[TomsMom]

I think I will ask my GP to ensure that I get Eltroxin rather than the generic tablets. I was given Eltroxin initially for a month and I am sure I didn't have all of these side effects - the sweating and aching. I wonder if he will comply, or if he will say it's just nonsense and there is no difference! Is there anything I can do if he refuses?

I am assuming you have a good relationship with your doctor and he listens to you. Tell him the side effects you are having now and that you are wondering if it is because you have a different brand of thyroxine as it seems to coincide with when you changed brands. Ask if he would mind prescribing Eltroxin so that you can see if the side effects go away. Assure him you will keep a diary of symptoms so that you can report back to him. Make sure he writes Eltroxin on the prescription.

What happens to the antibodies though, do they disappear as well and stop attacking?

Antibody attacks come and go. Each attack destroys a bit more of the thyroid. This is a good site about thyroid http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm

I have still not been told exactly what the cause of my problems was, but with a TPO antibody reading of 234, I am assuming it is Hashimotos disease, however have not actually been told this by my GP or the endo that I saw.

I don't think any of us know why we got an underactive thyroid in the first place. Sometimes it's genetic - your mum has it and there's a chance that you may too. But what caused your mum's in the first place???????? Sometimes trauma causes it (included in trauma is childbirth). Sometimes your thyroid just stops working for no known reason.

One cause of hypothyroidism is Hashimoto's disease. Ask your doctor if yours is Hashimoto's disease.

[melbury]

I am assuming you have a good relationship with your doctor and he listens to you. Tell him the side effects you are having now and that you are wondering if it is because you have a different brand of thyroxine as it seems to coincide with when you changed brands. Ask if he would mind prescribing Eltroxin so that you can see if the side effects go away. Assure him you will keep a diary of symptoms so that you can report back to him. Make sure he writes Eltroxin on the prescription.



Antibody attacks come and go. Each attack destroys a bit more of the thyroid. This is a good site about thyroid http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm



I don't think any of us know why we got an underactive thyroid in the first place. Sometimes it's genetic - your mum has it and there's a chance that you may too. But what caused your mum's in the first place???????? Sometimes trauma causes it (included in trauma is childbirth). Sometimes your thyroid just stops working for no known reason.

One cause of hypothyroidism is Hashimoto's disease. Ask your doctor if yours is Hashimoto's disease.

No my mum never suffered from thyroid problems. I will ask him to prescribe Eltroxin instead of the generic because I have found that with taking two different generic makes (one 25mcgs and one 50mcgs) that all of these side effects have kicked in.

Like everybody, I just want to feel well again!

[melbury]

[quote=TomsMom;9948885]Don't worry about Synthroid. We don't get that brand here. If there was anything wrong with our thyroxine we would have heard about it by now, our synthetic thyroxine has been around since the 1960s.


But Eltroxin is just the UK name for Synthroid! It is the same thing.

[TomsMom]

But Eltroxin is just the UK name for Synthroid! It is the same thing.

No, it isn't. Synthroid isn't made in the UK. It is made in the USA by Abbot Laboratories for the USA market. It is not available here under any name.

Look back at the list of ingredients I posted for all the different British brands of thyroxine. They all have levothyroxine sodium but the other ingredients differ slightly. Same for Synthroid. It will have levothyroxine sodium the same as ours but the rest of the ingredients are different. This is what Synthroid contains besides levothyroxine sodium:

acacia, confectioner's sugar (containing corn starch), lactose monohydrate, magnesium stearate, povidone, talc.

Also contains colours:

In the 25mcg tablet - FD&C Yellow No. 6 Aluminium Lake
In the 100mcg tablet - FD&C Yellow No. 6 Aluminium Lake plus D&C Yellow No. 10 Aluminium Lake
Other size of tablets also contain much the same.

So there are things in Synthroid which you wont find in Eltroxin or any other British brand.

If there was anything "dangerous" in the British brands I think it would have been made known by now considering thyroxine has been around for over forty years.

[TomsMom]

No my mum never suffered from thyroid problems.

Sorry Melbury, I wasn't implying that YOUR mum had hypothyroidism, I was just giving an example of how it can be genetic. I should have said "a patient's mum has an underactive thyroid so there's a chance that person could have it too, but what caused the patient's mum to have it in the first place". Sorry for any misunderstanding.

[melbury]

TomsMum

Sorry, I am just totally over-reacting to everything at the moment. I am not sleeping well and with having these sweats and palpitations - everything I read is sending me over the edge:eek:

My husband says I should stay off the internet because I just cause myself more stress - he is probably right.

Thanks for all of the information that you give, it is appreciated.

[TomsMom]

No probs Melbury. Just get yourself to the docs and have a chat and try again with the Eltroxin if he agrees. Good luck.

[bumble-bee]

Hi everyone :hello: i'm not sure how i've missed this thread, its so lovely to see everyone getting lots of support, I was desperate when I was first diagnosed to speak to someone who had it and could reassure me I would be "normal" again. There are no local support groups near me, but thankfully I found someone online who was wonderful helping me.

I was diagnosed last summer, it was the first time I have been ill really, I was depressed, very anxious, my skin was flaking off, I felt lonely all the time even when I was surrounded by people, I couldn't concentrate even to watch a TV programme and I cried all the time, thankfully I posted on here my symptoms thinking it might be the menopause and someone suggested a thyroid test, I am so thankful. On 50mg my depression went after a couple of months, but not the anxiety, I was just inside the normal TSH range so the doctor informed me I was fine. I decided if I wasn't going to get much help from my doctor I would help myself and read as much as I could, finding Dr Peatfield's book was a huge relief. I'm now on the piggie stuff :D and haven't grown a tail or started oinking yet ;) I don't have the energy like I used to, but I can cope with that as otherwise I do feel good again, just the odd days when I know my levels have dropped usually after doing too much or being ill. I totally understand how some of you are feeling, but I can confirm there is light at the end of the tunnel :beer:

Just to add as it might help some, I kept a private blog from when I first went to the doctors, at first all my posts were very miserable, but gradually I could see I was making progress and my good days were increasing and I was starting to feel like doing things again.

[pattycake]

Bumble-bee, I was interested to read your comment that you feel your levels drop after you have been doing too much. I think that must be what happens to me. If I have a particularly busy couple of days, I feel fit for nothing. Totally exhausted and yet my blood tests say that I am fine.

Do you think that the levels do fluctuate from day to day according to how much energy has been expended or how much stress you are under? Or is it simply a matter that we cannot do the same things which we used to be able to do and have just got to accept that life should be slower and easier? I am in my late 50's so perhaps this is just a sign of getting older.:confused:

[melbury]

Sometimes trauma causes it (included in trauma is childbirth). Sometimes your thyroid just stops working for no known reason.



I had an incredible amount of stress last summer. Whilst on holiday my OH was unwell, which resulted in me having to dial 999 from a phonebox (no mobile signal where we go and no phone in cottage) and he was carted off to hospital with suspected appendicitis. Upshot was he was left all night, (even though he had been told they would operating)running a frighteningly high temperature, appendix perforated, peritonitis, and he could have died. :eek: Was then discharged a mere 29 hours after the op feeling asolutely dreadful and I had to pack up and get us home. Since then he hasn't been able to speak - only whisper. It is obvious that some damage was done to his throat when he was anaesthetized. He ended up being off work for three months and never feels very well.

Sorry to waffle off topic, but believe me it was VERY STRESSFUL. When I mentioned this to doctor he didn't seem to think that stress could have any impact on thyroid, but I am not so sure.

[melbury]

I have to go for blood test tomorrow morning having been on the 75mcgs dose for a month. If the figure is still high I will be put up to 100mcgs. I am worried about this though, I have terrible nights now with sweats and heart palps, so surely if they increase the dosage this will only get worse!

[TomsMom]

I have to go for blood test tomorrow morning having been on the 75mcgs dose for a month. If the figure is still high I will be put up to 100mcgs. I am worried about this though, I have terrible nights now with sweats and heart palps, so surely if they increase the dosage this will only get worse!

And maybe being on a higher dose, if your GP deems it necessary according to your blood tests, that may help you on the way to recovery.

You can only get well when you are on the correct dose of thyroxine. Lots of things don't work properly when you are hypothyroid, when on the correct dose then things will gradually start getting back to normal.

Tips for when going for a blood test:

Don't take your thyroxine on the morning of the test. Reason: it may cause a spike in your levels and then your GP may end up with under medicating you because he thinks your levels are OK. Just take it when you get home.

Edited to add:

By the way, for any of the people who are taking thyroxine. Has your doctor told you WHEN to take it? It's rarely mentioned by doctors but read the information leaflet in your packet of tablets. It says something like "The dose is preferably taken before breakfast, once a day" - certainly in Eltroxin packs it says this. Also take it with water, not milk. Calcium affects the uptake of thyroxine. Also best taken on an empty stomach and leave it about an hour before eating. If you take calcium supplements take them in the evening rather than the morning.

I have a glass of water on my bedside table and leave my tablets next to it. When I first wake I take my tablets. I always nod off again for about another hour.

[TomsMom]

Totally exhausted and yet my blood tests say that I am fine.

Or is it simply a matter that we cannot do the same things which we used to be able to do and have just got to accept that life should be slower and easier? I am in my late 50's so perhaps this is just a sign of getting older.:confused:

Do you keep a record of past blood tests results and how you feel when on a certain dose? Have you noted any changes to symptoms when dose has been changed in the past? Do you know what your current blood test results are? What dose are you on?

General rule of thumb is 1mcg thyroxine per 1lb body weight. If you are 10stone = 140lbs = approx 150mcg thyroxine. However, we are all different. Some may need less, some may need more.

Ask your GP for your current blood test results.

FT4 range is approx 12-24, most people are best in upper quarter, about 19ish

FT3 range is approx 3-7, result should be in balance with FT4 and again in upper quartile.

If you are very low in the range for FT4 and FT3 you need to be higher up.

Range for TSH is around 0.27-4.2 Your TSH needs to be low in the range, generally around 1, some people need it even lower or suppressed.

Everyone is different but the above is about right for the majority of people.

Lab ranges vary so those are general but you get the idea. Ask your GP for the range his lab uses.

If you are within range, are you near the top or bottom or in the middle?

If you are outside the range he definitely needs to adjust your meds to get you back in range.

If you are in range and not feeling well, tell him what your symptoms are and that you would like to try an increase in meds for a few weeks to see if you feel better. If necessary plead your case, telling him how feeling like you do affects your life (and in what ways).

We are all entitled to feel well and once on the right dose of thyroxine you should feel as well as someone who has a perfectly working thyroid. If you lead a healthy lifestyle there is no reason why you shouldn't feel as well as a normal healthy person in their late 50s providing your GP allows you to adjust your meds accordingly.

[pattycake]

Thank you Tomsmum. I weigh 9st 4lbs which I feel is about 5lbs more than I would like. (I am 5'4"). My weight seems to be creeping up although I am careful with diet and exercise. I take 112.5microgms per day. My last results were T4 13.2 and my TSH was 0.15. I have never been given a record of the T3.

My previous results on 125 were T4 17.5 and TSH 0.03. I was then told I was overmedicated and reduced to 112.5. I am due another test at the end of May. This will be 3 months after reducing the dose.

I take the tablets immediately upon waking with a glass of water. I must admit that I then eat breakfast (cereal with skimmed milk) within about 15 minutes. I drink green tea without milk obviously. Would it be more be sensible to start having my shower before breakfast in order to give the thyroxine a chance to absorb?

Also, when I was first diagnosed as hypothyroid and went for my first blood test after commencing treatment, I actually phoned the surgery to ask if I should take the medication beforehand and was told that I should. Very interesting to hear that you believe this could affect the results, which does stand to reason IMHO.

[bumble-bee]

Bumble-bee, I was interested to read your comment that you feel your levels drop after you have been doing too much. I think that must be what happens to me. If I have a particularly busy couple of days, I feel fit for nothing. Totally exhausted and yet my blood tests say that I am fine.

Do you think that the levels do fluctuate from day to day according to how much energy has been expended or how much stress you are under? Or is it simply a matter that we cannot do the same things which we used to be able to do and have just got to accept that life should be slower and easier? I am in my late 50's so perhaps this is just a sign of getting older.:confused:

I'm the same patty and i'm 39, I just have to give in and rest. It seems to be a bit of both, i'm aware that I have to pace myself with work etc or I pay for it afterwards, but also some days I don't have much get up and go. I'm wondering now if I'm on too low a dose, I think when all the other side effects of an underactive thyroid went it didn't seem to bad having to put up with having less energy.

[melbury]

When I last saw the endocronologist he told me that it didn't really matter when you took your thyroxine or what you took it with (obviously not booze) - just as long as you do take it! I have read that some people prefer to take it at night, so thought I might try that. I was querying the fact that the instructions say to take first thing with water and as I always have cereal and milk about 10 mins after taking the tablets thought I should check, but he said it is fine.

Had blood test today so am anxiously awaiting results to see if my dose will be increased:eek:

[TomsMom]

I weigh 9st 4lbs which I feel is about 5lbs more than I would like. (I am 5'4").

That's a nice weight for 5'4". I am 5'5" and that was my weight when I was in my 20s and after I had got back to normal after stabilised on thyroxine. I am now 60, 10st 7lb, size 14 and am content with that. Have to admit if I was much lower I look drawn. I don't have a petite frame, more a medium one, so have never been sylph-like.

I take 112.5microgms per day. My previous results on 125 were T4 17.5 and TSH 0.03. I was then told I was overmedicated and reduced to 112.5. My last results were T4 13.2 and my TSH was 0.15.

As most lab ranges vary only slightly, yours should be around 12-24 for FT4. Your present result of 13.2 is very low. No wonder you are tired. Your previous result of 17.5 was almost mid-way so plenty of room for manouvre in an upwards direction to try to eliminate symptoms and stabilise your thyroid by increasing your dose until your results were in the upper quartile. Some people are fine mid-range. How did you feel then? Did you feel well enough to be happy with that again if your dose was increased?

I think your doctor was panicking a bit about the TSH at 0.15. The more important result is the FT4 and to see if it is in balance with the FT3 (which is rarely done). TSH can be suppressed as long as FT4 is within range. After all by taking thyroxine your body is being told - "don't bother producing Thyroid Stimulating Hormone (TSH) 'cos this person is taking this little thyroid pill and it saves us the job" sort of thing.

[On a personal note, I feel half-dead at 17.5, mine is right at the top of the range at 23.0 with a suppressed TSH of 0.02. Some docs would be very unhappy with that but my GP knows me well, knows that I'm the sort of person who wants to be responsible for my health, knows that I understand about hypothyroidism - and I have had it for well over 30 years - and trusts me that if I feel overmedicated I will drop my dose down and go and see her. So she is happy for me to be on 200mcg and have my results where I feel best and they are within range.]

9st 4lbs = 130lbs so 125mcg makes more sense, especially as your FT4 dropped so low when your dose was reduced. It was only just within range at 13.2, if it was two points lower a patient would be diagnosed hypothyroid with that result!


I have never been given a record of the T3

Usually only ordered by an endo, usually ignored by the lab if a GP requests it, so it has probably never been done.

I am due another test at the end of May. This will be 3 months after reducing the dose.

OK, see if you can hold out till then. Start making a diary. Write down as much as you can remember from previously. Keep adding to it regularly, how you feel, any symptoms that may have returned since being on the lower dose. All this can be discussed with your GP at your next meeting and, if it is the case, you can tell him you felt better on 125mcg and could you please be put back on it and monitored until you feel better, with increases if necessary and, of course, keeping within range (that bit will please him).

I take the tablets immediately upon waking with a glass of water. I must admit that I then eat breakfast (cereal with skimmed milk) within about 15 minutes. I drink green tea without milk obviously. Would it be more be sensible to start having my shower before breakfast in order to give the thyroxine a chance to absorb?

Like I said, better to leave it about an hour.

Also, when I was first diagnosed as hypothyroid and went for my first blood test after commencing treatment, I actually phoned the surgery to ask if I should take the medication beforehand and was told that I should.?

Nice one! Good to hear that this advice was actually given.

It might be an idea, if you haven't already got it, to get the little pink book from the pharmacy entitled "Understanding Thyroid Disorders" by Dr Anthony Toft. It is published in association with The British Medical Association and part of the Family Doctor Series. It probably costs about £4 now. It's a very easy book to read and understand and has a couple of very interesting points:

"JUDGING THE CORRECT DOSE OF THYROXINE
Your GP or thyroid specialist will usually prescribe a dose of thyroxine that raises the FT4 .... to the upper part of the normal range and reduces the TSH level in the blood to the lower part of the range. Typical results would be a FT4 of 24 (in a range of 10-25) ..... and TSH of 0.2 (in a range of 0.15-3.5). In some patients a sense of well being is achieved only when FT4 is raised, e.g. 30, and TSH low or undetectable. In this circumstance it is essential lthat the T3 level in the blood is unequivocally normal in order to avoid hypERthyroidism."

Also:

"Thyroid blood tests should not be interpreted in isolation and correct medical care will also depend on careful assessment of symptoms and clinical examination."

If your doctor is reluctant to increase your meds then discussing this little book and particularly the parts mentioned above should help, especially as the book is published in association with the BMA - he can hardly argue with that.

One last thing. Have you checked out www.thyroiduk.org I am a support worker for them and have been for a number of years. If you want to continue discussing your thyroid you might want to PM me rather than carry it on here. I don't want the mods to think I am dishing out medical advice, it is merely support and pointing people in the right direction.

[pattycake]

Thank you so much Tomsmum, you have really reassured me that I am not just being a wimp and that my levels really are not what they should be. I have been out and bought "Understand Thyroid Disorders" (£4.75). It makes very interesting reading and will give me some ammunition to take to the GP. He has been my doctor for many years and I find him to be amenable.

Although I do not sound overweight at just over 9st, I am a small build and feel bloated and sluggish. I have resolved to wait until the end of this month which will be 2 months on the lower dose and then ask for another blood test and go back to see my doctor.

Thank you again for all your help and support. I will check out the website you have suggested and pm you if I think of anything else.

[tweetyshells]

Well i have just been to see the doc about my results of my recent tests and i have come away feeling really deflated :(.
She said my tsh was 0.14 and if it was 0.10 then it would be now overactive.
So possibly now overmedicated.
She said they hadnt tested my T3 and she had no recent tests for that at all. How important is this people? as i dont know.
My T4 has been going up and up apparently. I can't remember the exact result but it was on the higher end of the scale.

Now when i was told in Jan it wasnt working properly again she said to put it up to 125 and then 150 after 2 weeks. So this is what i did. I was previously on 100mg before it all went pear shaped again.
Now she said that she wants me to put it down to 125 again as tsh is very low and what with palpatations aswell shes not happy with me being on that dose.
She did kinda give me the option to see how i am again in 6 weeks but argh i don't know now if i made the right decision?!
I just want to feel ok again.
I don't want to put on weight that i am trying to lose :(
Do you think i did the right thing? She said bloods again in 6 weeks.

[melbury]

Sorry to hear you are feeling down tweetyshells, try to keep cheerful.

I feel much the same as you because doc phoned this afternoon when I was at work and left a message. Has to be because my blood test results are back and he needs to speak to me - which I know is going to be bad news, he never phones if it is anything good. Probably going to up my meds and I have been feeling awful since they were put up from 50 to 75 about five weeks ago. The sweats are getting more regular, the chest fluttering worse and I haven't had a good nights sleep in months, I always wake up about every two hours now, usually on fire.

I was so hoping this blood test would be OK and they would tell me to reduce the amount. I am definitely going to argue the case for being prescribed Eltroxin, when I was first put on meds this is the one I was given and I don't remember having any side effects at all. Undoubtedly he will say this is rubbish and that they are all the same.

I have been really cutting down on food intake for the past few weeks, but the scales just will not budge:mad:

[tweetyshells]

Hope your results are good for you Melbury. I know what you mean about the scales not budging.

[melbury]

I am really upset this evening.

Doctor phoned me and, as expected, said my TSH was still way too high (16.87) and that I should increase my dosage to 100mcgs.

I then asked him if he could switch me over to Eltroxin from the generic one I have been having for the past five weeks, which I think is causing all sorts of side effects. He said that they had been instructed by head chemist (I don't know if he means chemist as in our local chemist shop or chemist as in man in charge at NHS) to switch all patients who are currently on Eltroxin over to generic levothyroxine, but didn't seem to know why. I told him it was because it was much cheaper.

Anyway I have arranged to go and see him on Wednesday and if he can't put me on the Eltroxin I think I will buy some on the internet because I just want to see if it does in fact make any difference to the side effects.

It makes me so angry :mad: :mad: I have hardly ever used the NHS and certainly not for prescriptions and yet they are being so mean - it is not even an expensive drug.

Does anyone know about this?

Sorry for venting - just makes me mad when they can treat people who have never paid a penny in.

[gingababe]

I too suffer from an under active thyroid, I am on levothyroxine I am just under 9st & 5ft3" so am not over concerned with my weight, I was diagnosed after giving birth.... I am losing loads of hair, my memory is shocking & I am not sleeping very well & when I do fall asleep, I seem to fall into a very deep sleep, & I have a lump that has appeared in my neck. & my hair has gone really weird fuzzy like on the top layer. & my skin is really spotty , it hasn`t been this bad for years, in fact when I was in my teens.Anyway I went to see the doctor who asked if I was self medicating !!!!! I only take the medication I was told to take which is 100mg, but are saying that my tsh,t3 & t4 are reading strange ? not sure what they are on about??
I can`t even pull my hair out as I`m losing too much, been sent for another blood test.....
& I have also been told that it may affect my fertilty??? Can anyone shed any light ??

[kymrob]

yep i suffer too!! its quite common i'm on a low dose and have been for 17 years i am 33 does it get worse with age?

gingababe i'm on the same tablets
my short term memory rubbish but long term good!
i have one or two spots i put it down to u a thyroids!
my speech can be all over the place when i am sleepy!
i was told fertilty can be affected, but i also have pco!!
also have very ichy legs???!!!

[gingababe]

kymrob I don`t have itchy legs but they ache a little like tooth ache???


Ginga

[kymrob]

no mine don't ache!
brittle hair too!!
eyes get sleepy and hubby knows when i forget to take tablet!!
i am losing weight at the moment! will always have to watch my weight!
i also have carpuls tunnel in both wrists which i think is related!!!
really i am falling apart!!
don't have regular periods ( which is not a bad thing for me)

[TomsMom]

I too suffer from an under active thyroid, I am on levothyroxine I am just under 9st & 5ft3" so am not over concerned with my weight, I was diagnosed after giving birth.... I am losing loads of hair, my memory is shocking & I am not sleeping very well & when I do fall asleep, I seem to fall into a very deep sleep, & I have a lump that has appeared in my neck. & my hair has gone really weird fuzzy like on the top layer. & my skin is really spotty , it hasn`t been this bad for years, in fact when I was in my teens.Anyway I went to see the doctor who asked if I was self medicating !!!!! I only take the medication I was told to take which is 100mg, but are saying that my tsh,t3 & t4 are reading strange ? not sure what they are on about??
I can`t even pull my hair out as I`m losing too much, been sent for another blood test.....
& I have also been told that it may affect my fertilty??? Can anyone shed any light ??

Hi Gingababe

Have you read through all of this thread? I know it is getting quite long but if you haven't read all of it can I suggest you read a couple of my replies - post numbers 93 and 95 on page 5.

Blood test ranges are mentioned and explained which may help you understand a bit more. It also explains why it is important to ask about your blood test results and keep a note of them. Do you have your blood test results? If not ask for them. Do not be fobbed off - get the actual numbers and the reference ranges, you are entitled to them. Then see where in the range you are. That will tell you if you are nearer the low end of FT4 (towards hypothyroidism) or at the top end (towards hyperthyroidism). Same with FT3. TSH is the opposite, a high TSH means underactive.

Hair loss is a very common symptom of an underactive or under-treated thyroid. Before I was stabilised on the correct dose of thyroxine, every time I washed my hair I lost so much it clogged up the plug hole and the bath started to fill with water as if the plug was in!

Hypothyroidism can affect fertility and lots of other things but, get on the right amount of thyroxine for you, get the thyroid stabilised and things should gradually get back to normal.

My guess is you probably need to be on 125mcg. Get your results, ask your doctor to explain what he meant by are saying that my tsh,t3 & t4 are reading strange ? not sure what they are on about?? . If you find that you are low in the range for FT4 and FT3 and high in the range for TSH ask him if he will allow you to have a trial of increased thyroxine, give it 2 to 3 months and see how you feel then. But keep a diary, make a note of everything that changes/stays the same for reference when you go back.

[gingababe]

[quote=TomsMom;10101201]Hi Gingababe.

Hair loss is a very common symptom of an underactive or under-treated thyroid. Before I was stabilised on the correct dose of thyroxine, every time I washed my hair I lost so much it clogged up the plug hole and the bath started to fill with water as if the plug was in!


Thats exactly what is happening with me I shower & wash my hair & I have a full bath without the plug, I have just had another blood test & will go back to the doctors & get the full results & report back... he said last time that he was going to send me to a specialist, as my reading didn`t make sense & had I been self medicating, I replied well yes I take the tablet myself didn`t realise he wondered if I had been changing my dose. doh!:confused:

I will go back to the beginning & read the thread & thank you for your help.

[TomsMom]

I am really upset this evening.

Doctor phoned me and, as expected, said my TSH was still way too high (16.87) and that I should increase my dosage to 100mcgs.

I then asked him if he could switch me over to Eltroxin from the generic one I have been having for the past five weeks, which I think is causing all sorts of side effects. He said that they had been instructed by head chemist (I don't know if he means chemist as in our local chemist shop or chemist as in man in charge at NHS) to switch all patients who are currently on Eltroxin over to generic levothyroxine, but didn't seem to know why. I told him it was because it was much cheaper.

Anyway I have arranged to go and see him on Wednesday and if he can't put me on the Eltroxin I think I will buy some on the internet because I just want to see if it does in fact make any difference to the side effects.

It makes me so angry :mad: :mad: I have hardly ever used the NHS and certainly not for prescriptions and yet they are being so mean - it is not even an expensive drug.

Does anyone know about this?

Sorry for venting - just makes me mad when they can treat people who have never paid a penny in.


I had my prescription made up a couple of weeks ago and got Eltroxin as normal, as already mentioned it has been named on my script for a few years now. I certainly haven't been told that I must be switched to another brand.

I do know that pharmacies are directed to obtain and dispense the cheapest brand they can get when they restock so that is why patients sometimes get a different brand when renewing their prescription when the script just says "thyroxine". However, it doesn't make sense that a pharmacist can dictate to a GP. It is the GP who decides which medication is prescribed, be it branded or generic, but the NHS will use generic on grounds of cost. As you say, thyroxine is very cheap and the difference between a brand name and generic is very small in this case.

Go to your appointment on Wednesday and discuss with him what you have mentioned about you having these side effects on the generic brand but not on the Eltroxin and could you please go back on Eltroxin for a trial period to see if the side effects disappear.

I would advise against buying thyroxine on the internet.

(1) You do not know if you are getting the genuine article from a supplier who does not require a prescription. (2) Some of the Eltroxin available online is not made by Goldshield, who make the Eltroxin that is dispensed here on prescription. That is what you would have had before. Some of the online Eltroxin is made by GlaxoSmithKline and may have different ingredients and you could get the same side effects as with the generic ones you have now.
(3) Some suppliers require a prescription - which would have to say Eltroxin I should think - so where do you get that if your GP wont prescribe it.
(4) You will probably have to import it from America - £15 for 100 x 100mcg tablets, plus postage. Any number bigger than that will take you over the £18 limit for importing good from overseas and then you get walloped with VAT and charges!

Your best bet is to calmly discuss this with your GP. If he wont budge ask him for a referral to an endo. If you're still not satisfied you could always go the private route but be prepared for big bills for consultations.

[melbury]

I have just found this little bit of news - this could well be the reason why chemist had told doctors not to prescribe Eltroxin as they didn't have any of the 50mcgs tabs in stock. If you go down the page a little bit and read under Supply Issues - Goldshield Products.

http://www.pjonline.com/pdf/_donotindex/pj_20080322_nb.pdf

Perhaps I will be lucky then after all - fingers crossed.

[TomsMom]

I have just found this little bit of news - this could well be the reason why chemist had told doctors not to prescribe Eltroxin as they didn't have any of the 50mcgs tabs in stock. If you go down the page a little bit and read under Supply Issues - Goldshield Products.

http://www.pjonline.com/pdf/_donotindex/pj_20080322_nb.pdf

Perhaps I will be lucky then after all - fingers crossed.


Well done for finding that!

You could ask for your tablets to be prescribed in 25mcgs which would then give you the flexibility, once you're on 100mcg, to drop down if you feel the necessity. Easy enough to split a pill - just get a pill cutter for a couple of quid from the pharmacy. Presuming, of course, that your GP is happy for you to do that. It is cheaper to prescribe the 100mcgs than the 25mcgs but thyroxine is not that expensive so I don't think it would be prohibitive for the 25s to be supplied.

[bank_of_slate]

I'm back at the doc's for blood tests on Wednesday!
I've asked the GP to refer me to an Endocrinologist because I haven't felt 'right' for ages!
...Linda xx

[sexyjessie599]

Hi I have been taking thyroxine for a long time and think the more you read about things on the net the more worried you will get,it will take a few months to get right and then bob's your uncle.
Can I just say to everyone that it is very dangerous to take st Johns wort when taking thyroxine or any other thyroxine based medication.

[SoozyJ22]

Can you explain more about the St John's Wort and thyroxine please jessie?

[DrFluffy]

Hi - I've had an underactive thyroid for about 20 years and know exactly what you mean. When I'm feeling a bit down I take St Johns Wort for a few days until it levels out again - helps no end.



Do your GP and endocrinologist know you use JSW? It's basically natural prozac, but makes the enzymes in your liver that breakdown toxins etc less active, so can really affect the way your body deals with other medications, which can be life threateneing (if a drug is in your body to a greater concentration, as JSW is slowing its breakdown, it is easier to push yourself over the safe limit.)

I'm not doubting the effects of JSW, but given it's natural, a lot of people do not realise that it can actually be dangerous, and never mention taking it to medics...

[SoozyJ22]

So does that mean that taking SJW as well as thyroxine could push you more in the direction of making you hyperthyroid rather than making you hypothyroid?

[sexyjessie599]

Can you explain more about the St John's Wort and thyroxine please jessie?
Hi all I know is my endo told me not to take it because it can be toxic in some people,I could take it and be fine but you could become very very unwell.
He recommends that none of his patients take it as there is too much margin for error in the blood results.
Hth.
Jessie

[gingababe]

Ok, my blood test results have come back, I asked the receptionist if I could book an appointment, she said "no need results are ok", To which I asked if I could have the results, she advised me that she wasn`t able to give them to me, that was up to the doctor, so I again asked for an appointment so that I could discuss the results... I was told no available appointments & ring after 0815 in the morning......

Can pull my hair out as I`m losing tooooo much:confused:
Will post later when I get more info..

[melbury]

Originally posted by TomsMom
Go to your appointment on Wednesday and discuss with him what you have mentioned about you having these side effects on the generic brand but not on the Eltroxin and could you please go back on Eltroxin for a trial period to see if the side effects disappear.

Your best bet is to calmly discuss this with your GP. If he wont budge ask him for a referral to an endo. If you're still not satisfied you could always go the private route but be prepared for big bills for consultations.

[/QUOTE]
I went to GP this afternoon armed with my bit of paper about the Eltroxin, he said he had looked it up in his book (apparently they have a book of available drugs that is issued every month or something) and it was definitely NOT in there anymore. He said he would give me a handwritten prescription for it so I could go on a hunt around to see if any pharmacists had it. Lucky for me the one where I live had just five packs on the shelf of which I got four:T I wouldn't hand over the prescription until they had checked. Trouble is doctor wouldn't change my prescription on their database to Eltroxin just in case it wasn't available and then I could end up with nothing. But I have got two months supply now, so hopefully that will be long enough to tell if it agrees with me more than the generic one.

When I went through all of the symptoms that I have been having since my dose was upped to 75mcgs - i.e. sweats/hot flushes, aching joints, tiredness and headaches - he says that is obviously due to the menopause having started.:mad: Now I know for sure that I wasn't suffering from ANY of those symptoms prior to going onto the thyroxine, so that did make me a bit cross, it would just be a bit too much of a coincidence. These doctors seem to want to blame everything on the menopause. When I saw the endocronologist he said that thyroxine doesn't have any side effects whatsoever because it is not a drug it is a hormone replacement, but from everything I have read there are loads of people suffering from side effects - we can't all be starting the menopause. I just hope that switching over to the Eltroxin will make at least some of them disappear.

I have to keep taking the 100mcgs dose now for two months and then go back for another blood test.

Honestly, I really felt that I knew more about the subject than he did, which is a bit scary and makes me wonder why it is him earning the £110,000 per annum salary:rotfl:

[TomsMom]

Glad you got the Eltroxin Melbury. Hopefully you will be better on these, at least you've got a couple of months' trial to see if your symptoms disappear and hopefully prove your point. I will try and find out if there's a problem with Eltroxin, hope not.

Don't forget to keep a diary, write everything down so that you can report back any changes next time you see your doc.

Shame docs tend to blame menopause for certain symptoms. I had something similar when I first became hypothyroid. I was in my twenties with two young children and - you've guessed it, I was told it was because I was a young mum with young children so of course I was going to be tired, and it took two years before my GP even thought of sending me for a blood test, and only then when hubby had had enough of me and marched me down to the surgery and demanded my GP "sort me out"!

[tweetyshells]

Well i am now nearly a week in on my lower dose tablets and i am soooooo tired :(.
Roll on 6 weeks time and hope they let me put my tablets up again.

Anyone know if i was over medicated would it affect fertility? I always thought that if underactive it would affect is but according to nhs direct its overactive that cant cause infertility.
We are trying for baby no2 so really want to do whats best to help that aswell as me.

[melbury]

[
quote=TomsMom;10228145]Glad you got the Eltroxin Melbury. Hopefully you will be better on these, at least you've got a couple of months' trial to see if your symptoms disappear and hopefully prove your point. I will try and find out if there's a problem with Eltroxin, hope not.



Please post if you find any more information on the Eltroxin, would be grateful to know what is going on with it.

How long do you think it will take to get the generic out of my system and the Eltroxin in? I just want these hot sweats to STOP:mad: I don't care what doc says, it wasn't until I was put on the 75mcgs dose of generic that this started.

[melbury]

Well i am now nearly a week in on my lower dose tablets and i am soooooo tired :(.
Roll on 6 weeks time and hope they let me put my tablets up again.

Anyone know if i was over medicated would it affect fertility? I always thought that if underactive it would affect is but according to nhs direct its overactive that cant cause infertility.
We are trying for baby no2 so really want to do whats best to help that aswell as me.


Sorry to hear you are not feeling too good tweetyshells. Perhaps your body will adjust to the lower dosage and you will stop feeling tired. Good luck.

[TomsMom]

Please post if you find any more information on the Eltroxin, would be grateful to know what is going on with it.

I have enquired if Thyroid UK knows anything about it. I'll get back to you when I get an answer.


How long do you think it will take to get the generic out of my system and the Eltroxin in? I just want these hot sweats to STOP:mad: I don't care what doc says, it wasn't until I was put on the 75mcgs dose of generic that this started.

The half life of thyroxine is 5-7 days. That means that it takes 5-7 days for one half of the biological activity of the hormone to be lost. So if you take 100mcgs, after 5-7 days there is 50mcgs left, after another 5-7 days there is 25mcgs left, another 5-7 days 12.5mcgs left, etc. So it does take a few weeks. But remember, in that time you are introducing Eltroxin so that will start to build up in your system as the generic is being lost.

As always, be patient, it will not right itself overnight unfortunately.

[gemold]

Ok, my blood test results have come back, I asked the receptionist if I could book an appointment, she said "no need results are ok", To which I asked if I could have the results, she advised me that she wasn`t able to give them to me, that was up to the doctor, so I again asked for an appointment so that I could discuss the results... I was told no available appointments & ring after 0815 in the morning......

Can pull my hair out as I`m losing tooooo much:confused:
Will post later when I get more info..

That's exactly the sort of service I get. I was supposed to be having a telephone consultation this morning and what I got was the receptionist - exactly as you have described above. Unbelievable.

It makes me sooo angry because they are messing with our lives and make me doubt my own sanity - bad enough when you can't think straight anyway.

[TomsMom]

That's exactly the sort of service I get. I was supposed to be having a telephone consultation this morning and what I got was the receptionist - exactly as you have described above. Unbelievable.

It makes me sooo angry because they are messing with our lives and make me doubt my own sanity - bad enough when you can't think straight anyway.

A little tip for you gemold (and I think gingababe has maybe sussed this).

When you have a thyroid blood test it's always good to make a note of the results. NEVER ring up for them. ALWAYS make an appointment to see your GP, not even discuss it with him on the phone but a face to face in the surgery appointment.

That way you can get the exact number result rather than just the "your results are fine" that you will get over the phone. You can then discuss your results, ask any questions, and maybe request an increase in your medication if you feel that you would be better for you. As long as your results are within range there is room for manouvre regarding your thyroxine dose but this would need to be discussed with your GP and possibly you may need to convince him to give you a trial and this can't be achieved in a phone call.

[TomsMom]

[

Please post if you find any more information on the Eltroxin, would be grateful to know what is going on with it.



Melbury, nothing has been heard at Thyroid UK about GPs not putting Eltroxin on a prescription. If something comes up they will let me know.

[melbury]

Melbury, nothing has been heard at Thyroid UK about GPs not putting Eltroxin on a prescription. If something comes up they will let me know.


Thanks for letting me know, hopefully it was just a blip and normal supplies will be resumed.

By the way, have you ever heard of anyone getting menopause symptoms when they started on thyroxine? I know that lots of younger people take it, so obvioulsy this wouldn't apply to them, but just wondered if the tablet can have the effect of hastening you into menopause if you are teetering on the brink of it:confused:

[gemold]

A little tip for you gemold (and I think gingababe has maybe sussed this).

When you have a thyroid blood test it's always good to make a note of the results. NEVER ring up for them. ALWAYS make an appointment to see your GP, not even discuss it with him on the phone but a face to face in the surgery appointment.

That way you can get the exact number result rather than just the "your results are fine" that you will get over the phone. You can then discuss your results, ask any questions, and maybe request an increase in your medication if you feel that you would be better for you. As long as your results are within range there is room for manouvre regarding your thyroxine dose but this would need to be discussed with your GP and possibly you may need to convince him to give you a trial and this can't be achieved in a phone call.

I managed to see a GP this afternoon after ringing back.
My TSH back in Feb was 2.34 and my T4 was 13.2.
He said yes you're fine. I told him I did not feel it and listed all my symptoms which have reappeared in the last 2wks - cold hands and feet, sleeping with hotwater bottles, hair falling out, dry skin, feeling bloated, retaining water, a strange feeling swallow and puffy feeling neck, aching joints - like toothache in my knees and ankles, a feeling of flatness, memory loss, losing track of a conversation, tiredness and lethargy... I then told him of a couple of new ones including my last period was 4th April but have just spotted for 2days this week. He asked did I think I was depressed and if I needed a couple of weeks off work.

That was it. He said if he upped my thyroxine I would become T4 toxic and he wouldn't do that. I've come away with a blood test for aneamia despite me telling him that I take a multi vit every night.

I came home and cried so yes, now I could well be depressed thanks!

How do you ask for an increase in meds or for a referral when met with such a brick wall? I'm usually a good girl and don't like to trouble people so thought I was actually being proactive for a change instead of waiting for months and getting on with things - but just got talked down again.

I'm telling myself to ring again next week and ask to see someone else - think I'll need a big dose of good luck....

[TomsMom]

I managed to see a GP this afternoon after ringing back.
My TSH back in Feb was 2.34 and my T4 was 13.2.
He said yes you're fine. I told him I did not feel it and listed all my symptoms which have reappeared in the last 2wks - cold hands and feet, sleeping with hotwater bottles, hair falling out, dry skin, feeling bloated, retaining water, a strange feeling swallow and puffy feeling neck, aching joints - like toothache in my knees and ankles, a feeling of flatness, memory loss, losing track of a conversation, tiredness and lethargy... I then told him of a couple of new ones including my last period was 4th April but have just spotted for 2days this week.

Okay gemold, first thing I'll say is that a FT4 of 13.2 is very low.

Go to page 5 in this thread http://forums.moneysavingexpert.com/showthread.html?t=683809&page=5
then look at posts #93 this explains about ranges and #97 particularly the last part about the book "Understanding Thyroid Disorders".

Ask for a new blood test and see what the result is now. As I've mentioned, keep a diary of your test results, dates, symptoms, what dose you're on, and compare.

He asked did I think I was depressed and if I needed a couple of weeks off work.

Sad but typical and unfortunately a lot of thyroid patients are told they are depressed - at least he asked you!


That was it. He said if he upped my thyroxine I would become T4 toxic and he wouldn't do that.

You will not become T4 toxic unless your FT4 goes over the top of the range and with it being at 13.2 you're a very long way off that, unless of course you had symptoms of it which, of course, you do not. If you were 2 points lower in the range you would be diagnosed as hypothyroid as a new patient.


How do you ask for an increase in meds or for a referral when met with such a brick wall?

See the other posts I mentioned, show the book to him. If he still refuses to increase your dose then politely tell him that the way you feel at the moment is having a detrimental effect on your life (tell him how) and you feel that you would like to try and get back to how you were before you became hypothyroid - in fact that is what should happen if you are on the right dose of thyroxine and your thyroid stabilises - and if he can't help you any further then will he please refer you back to your endocrinologist. If you don't get any further with your endo then either change your doctor or consider going the private route. I can promise you that NO private thyroid specialist will consider a FT4 result of 13.2 is fine.

[juno]

I have really really dry skin, especially on my hands. I've got blood tests in June, but is there anything I can do til then? I've tried moisturising and it helps for a short while, but now it's getting ridculous how often I need to do it.

[TomsMom]

By the way, have you ever heard of anyone getting menopause symptoms when they started on thyroxine? I know that lots of younger people take it, so obvioulsy this wouldn't apply to them, but just wondered if the tablet can have the effect of hastening you into menopause if you are teetering on the brink of it:confused:

No Melbury, I haven't heard of this. Once your thyroid stabilises again when on thyroxine everything in your body that wasn't working properly when you were hypo should start working properly again so it doesn't make sense that thyroxine might hasten menopause.

Menopause can happen at any age although the usual is early to mid 50s nowadays. There are always exceptions to the rule though. I don't know what age you are but if someone is in their late 40s they could be in the peri-menopause stage when strange things can start to happen!

[TomsMom]

I have really really dry skin, especially on my hands. I've got blood tests in June, but is there anything I can do til then? I've tried moisturising and it helps for a short while, but now it's getting ridculous how often I need to do it.

When I was undermedicated the skin on my legs was so dry that when I took my trousers off dry skin would shower over the floor. I never had it anywhere else though.

[kassikoo]

Hi Everyone i am new to the board, i am underactive thyroid and i saw my GP the other day and i asked if i was correct in saying my ft3 and ft4 needs to be leveld out but he said no the most important thing is my TSH level as i wanted these tests doing can anyone advise please. thanks kassikoo:eek::confused:

[TomsMom]

Hi Everyone i am new to the board, i am underactive thyroid and i saw my GP the other day and i asked if i was correct in saying my ft3 and ft4 needs to be leveld out but he said no the most important thing is my TSH level as i wanted these tests doing can anyone advise please. thanks kassikoo:eek::confused:

Is there a reason you wanted them done? Are you still experiencing symptoms?

If you are well and think you are getting on fine with your present level of thyroxine then leave things as they are, going by symptoms is better than going by blood test results as far as the patient is concerned.

If you are still experiencing symptoms, what tests have you had done and what are the results?

[kassikoo]

Hi TomsMom i am still having symptoms as i have been haveing when i was diagnosed 9months ago i was TSH of 4.49 and ft4 of 13.6 i was started on tyhroxine of 25mcgs then 50 and now 75s my TSH is now 2.69 and i feel tired pains in my joints keep getting a very uncomfortable neck, feels funny when i swallow sometimes and like a bruised feeling as if someone has tried to strangle me. I have requested an autoimmune antibodies test and the gp has agreed to that which is good and he said i could have hashimotos and yes your right thats what i've been tolld before to go by your symptoms rather than just your results, i just wondered if anyone had any other advise to give thanks again Kassikoo

[TomsMom]

Hi TomsMom i am still having symptoms as i have been haveing when i was diagnosed 9months ago i was TSH of 4.49 and ft4 of 13.6 i was started on tyhroxine of 25mcgs then 50 and now 75s my TSH is now 2.69 and i feel tired pains in my joints keep getting a very uncomfortable neck, feels funny when i swallow sometimes and like a bruised feeling as if someone has tried to strangle me. I have requested an autoimmune antibodies test and the gp has agreed to that which is good and he said i could have hashimotos and yes your right thats what i've been tolld before to go by your symptoms rather than just your results, i just wondered if anyone had any other advise to give thanks again Kassikoo

OK. I don't know if you have read through all of this thread but if not then look at page 5, post #93 which I think will help you understand about blood test ranges and post #95 - towards the end - which suggests getting the book "Understanding Thyroid Disorders". That's a start.

As far as blood tests go, your GP really should be doing FT4 as well as TSH. It's generally considered that most people feel best with a TSH of below 2 but around or below 1 is better still. It is important that the FT4 test is done and taken into consideration. FT3 is very rarely done, usually only by an endo. Your FT4 at 13.6 is very low in the range and there is plenty of room with both your TSH and FT4 for you to try an increase in meds and see how it goes.

If you want to know more then there are a couple of sites www.thyroidUK.org which I suggest you look at first and if you want more information then http://thyroid.about.com (an American site with lots of info).

[PoorKat]

Hello, I've been treated for Hypothyroidism for almost 3 years now on 100mcg of Levothyroxin. The pharmacy kept changing my brand and I feel like I did better on a different brand. Have any of you experienced a difference between your levothyroxin that just ends in BP and the stuff that ends in BP Ph. Eur. The kind I'm on now is "Alpharma (Almus) Levothyroxin 100mcg BP". I'm within normal ranges with T4 14.3 and TSH .37 but GP has prescribed 25mcg extra (due to symptoms) and this has come as "Goldsheild Levothyroxin 25mcg BP Ph. Eur". I've experienced a similar issue with 2 brands of codeine, the one ending in Ph. Eur seems to work so much better for me, whereas the other has a weaker affect. Now that I've taken the extra 25mcg it feels too much. Anyone else experience problems with different brands?

[TomsMom]

Hello, I've been treated for Hypothyroidism for almost 3 years now on 100mcg of Levothyroxin. The pharmacy kept changing my brand and I feel like I did better on a different brand. Have any of you experienced a difference between your levothyroxin that just ends in BP and the stuff that ends in BP Ph. Eur. The kind I'm on now is "Alpharma (Almus) Levothyroxin 100mcg BP". I'm within normal ranges with T4 14.3 and TSH .37 but GP has prescribed 25mcg extra (due to symptoms) and this has come as "Goldsheild Levothyroxin 25mcg BP Ph. Eur". I've experienced a similar issue with 2 brands of codeine, the one ending in Ph. Eur seems to work so much better for me, whereas the other has a weaker affect. Now that I've taken the extra 25mcg it feels too much. Anyone else experience problems with different brands?


This sort of information is easily obtained by googling, these are extracts from links found on google:

British Pharmacopoeia (BP). BP is the authoritative collection of standards for UK medicines. Australia and Canada are just two of the countries that have adopted the BP as their national standard alongside the UK.

European Pharmacopoeia (Ph. Eur.). The Ph. Eur. is produced by the European Pharmacopoeia Commission (EPC) located in Strasbourg, France. The UK participates at all stages of Ph Eur monograph development and revision

So it would seem there shouldn't be any difference between BP and BP Ph Eur.

The difference is in the brands. Read this thread and pick out the relevant messages as someone else has asked this question and I have answered it fully.

[kassikoo]

Thankyou Tomsmom that was very kind of you to give me that info i'm very sorry i meant to tell you mt ft4 is now 17.2 and my tsh 2.69 i dont know how i stand at that my GP says its normal, i will look at that page and post thank you again sweetheart for helping kassikoo your an:A

[TomsMom]

Thankyou Tomsmom that was very kind of you to give me that info i'm very sorry i meant to tell you mt ft4 is now 17.2 and my tsh 2.69 i dont know how i stand at that my GP says its normal, i will look at that page and post thank you again sweetheart for helping kassikoo your an:A


Sorry Kassikoo, I said post #95 will tell you about the book but I think it's actually post #97.

A lot of GPs will say 17.2 is fine as it is mid-range but there is still plenty of room for you to increase this further up the range if you are still having symptoms, ditto the TSH at 2.69 can go down a bit and still be well in range.

That paragraph in the book I mention in my previous post could be invaluable in asking your GP to allow you to trial an increase in meds. If he is the sort you can discuss things with then show him the page in the book and hopefully you wont have a problem, if it was your doc who said that it's best to go by symptoms that's a plus - a lot of docs will only take numbers into account.

[jimble]

Sea Kelp tablets (from your local health food store) are a cheap and effective way of maintaining regular thyroid function.
90 tabs cost something like £3.
Regular exercise and skin brushing help too as they stimulate your endocrine system and therefore your thyroid

hope this helps

tc jimble

[TomsMom]

Sea Kelp tablets (from your local health food store) are a cheap and effective way of maintaining regular thyroid function.
90 tabs cost something like £3.
Regular exercise and skin brushing help too as they stimulate your endocrine system and therefore your thyroid

hope this helps

tc jimble

But be careful if already taking thyroxine as supplemented iodine (kelp) may interfere with thyroid drugs. If a patient is already on thyroid replacement, it is wise to consult a doctor or pharmacist before supplementing with iodine.

Very high intakes of iodine can cause hypothyroidism (as well as lack of iodine).

Don't forget that our salt is iodized so anyone who uses salt, eats fast food and eats seafood probably already has an adequate intake of iodine.

[accessn12]

Kassikoo, I think you might remember me. I hang with a couple other uk hypos who are in the same boat as you with md's that don't know what feeling normal means and go totally by those outdated tsh ranges. Just thought I'd say hi from all of us and wish you the best of luck. Perhaps you could look me up sometime. I'll be around.

[whitewing]

Just wanted to say Thank You to all on this thread. My MIL's medical exemption certificate came thro last week. We would never have known about it if we hadn't read it in here.

[kassikoo]

Thanks again tomsmom you are a great help love Kassikoo:T

[kassikoo]

Hi Accessn thanks for popping in hope to see more of you yes i remember you well and i am due to go for my Antibodies test i cant wait i just want to know yeah or neah and to start and put my life into perspective i need to get fit lol! and with my heart problem its hard to know how far to push myself love Kassikoo x:j

[kassikoo]

Hi Jimble i will have a look at those kelp tablets, that info sounds good too thanks Kassikoo:D

[TomsMom]

Hi Jimble i will have a look at those kelp tablets, that info sounds good too thanks Kassikoo:D

Kassikoo, please also take note of my reply to that, #143, and be careful if considering kelp tablets. From what you say, as you are already on thyroxine, it could be a simple case of an increase in meds will help.

Most people get enough iodine from their diet, seafood, cod, sea bass, haddock, vegetables, nuts, meat, mushrooms and, of course, our normal iodised salt which, besides that which we add ourselves, is found in most processed foods.

[juno]

When I was undermedicated the skin on my legs was so dry that when I took my trousers off dry skin would shower over the floor. I never had it anywhere else though.
My feet are like that when i take my socks off:(

[kassikoo]

Hi Tomsmom thanks babe thanks for that on the kelp i think your right i will see how things go b4 trying those out love kassikoo:T

[accessn12]

kassikoo, if you ever wanna get in touch, look at my profile on here. My email addie's on the welcome page of my web site or you can hit the support button there too and I'll get the message.

[deedee6]

Hi

I have read through this thread - or tried my brain fog is particularly bad at the minute! - so if my question has been asked already, please forgive me! I have had thyroid problems for about 5 years and following an episode 2 yrs ago when my thyroxine was too high I also have ongoing sinus problems.

I regularly feel lethargic, hot/cold, terrible pains in my neck and in my elbows and knees. My sinuses keep swelling, and I have terrible pressure in my ears. I have such a "drop in energy" about 3pm that I resort to chocolate to keep me going.

I summoned up the courage to see my Dr today - he says its all down to anxiety and wants me to go on citalopram (I have been on this before when my sinus problems were so chronic I was retching blood regularly and became extremely anxious that I had some horrible fatal illness). But I know its not the same thing.

I have had some recent blood tests done - meant to ask the dr for results, but got really upset and just had to get out - so completely forgot. Just rang the receptionist and she said TSH was 0.71 but that T3 and T4 were not tested and that TSH was in normal range.

Is it then that my symptoms are down to anxiety only? - dont really know where to turn as I feel I cant go back to my gp, but I cant go on like this.

Sorry for the long message:o

Dee
XX

[TomsMom]

Is it then that my symptoms are down to anxiety only? - dont really know where to turn as I feel I cant go back to my gp, but I cant go on like this.

Dee
XX

Hi Dee, sorry things are bad for you at the mo.

Unfortunately, no-one on here can tell you if your symptoms are down to anxiety. First of all, no-one knows your personal situation or your medical history. Secondly, it is not allowed to give actual medical advice on here, the mods would close the thread if that happened. However, I think we are all trying to support each other and point people in the right direction if possible.

Your TSH is in a good place as long as your thyroid symptoms are stable. However, it is always wise to have the FT4 test done at the same time as that is a better indicator. Have you any past results - give numbers and dates if you have. You could go back to GP when you feel up to it and request FT4.

If you have a dip in energy regularly at 3pm I'm wondering about your diet. Are you having low GI foods which release energy slowly and therefore keep us going longer. This would be good at lunchtime and should prevent this energy dip mid-afternoon. Chocolate is just a quick sugar fix - you'll get a high for a short period of time then go crashing down again so not a good idea. Something like a banana would be better in that situation.

The lethargy, hot/cold and joint pains can be indicative of thyroid not at it's best (i.e. undertreated) but with a TSH of 0.71 this doesn't indicate that is the case. Hence the need for FT4, if your FT4 is very low in range that can be an indicator of thyroid not at optimum level as most people are best with FT4 in the upper quarter of the range.

Sinus problems are not a common symptom of hypothyroidism.

Can I suggest, if you haven't already done so, to look at www.thyroiduk.org which has lots of useful information.

Also get the book I suggested in #97 "Understanding Thyroid Disorders" which is very helpful and easy to read.

[bank_of_slate]

Well I had a great time at my doctor's yesterday!
she was taking 6 vacutainers of blood!
I was told to fast from 11pm on Sunday night (which I was nervous about because I'm very hypoglycaemic anyway!)
I was going to ask to lie down for it but when I got in the nurse's room she was using the couch as a desk and had all her blood taking stuff all over it. I should have asked her to move it but hey ho!
well on the 3rd vacutainer I passed out flopping onto the couch (she continued until she'd filled all 6!!!!)
It took me 40 minutes to properly come round, the GP was rushed in to do my blood pressure as I'd gone into like mini 'shock'
Had to go home afterwards and sleep because I felt so woozy.
To add insult to injury the surgery phoned yesterday afternoon (waking me up) and said she'd done one of the tests wrong, I'll need to have it done again at the hospital because it needs to be sent straight to the lab or put on ice!!!!!
Grrrrrrrrr!
...Linda xx

[gingababe]

Ok Help needed, popped to the doctors today to see what my results of my blood test are, as the receptionist had told me they are fine & didn`t need to see a doctor, & couldn`t give me my results... so when I went to see him I wrote down everything I needed to tell him, only because I can`t remember. like me being cold, forgetful, aching, having a lump in my neck that comes up & down, losing lots of hair, having dry skin getting upset. I am underactive & 100mg of levothyroxine so my results are iron fine. tsh were surpressed & my ts3 was borderline at 20.9 & my ts4 was ok, when I asked what ok was I was told within guides, so I asked what well within guide was???? then I got told I needed to see a skin specialist for my loss of hair... & I have been told to reduce my tablets to 75mg.
Any help as I don`t understand the readings would be appreciated.
Many thanks
Ginga

[TomsMom]

my ts3 was borderline at 20.9

First of all, there is no ts3 test. FT3 and TT3, FT4 and TT4 as well as TSH.

You need to confirm what test this refers to, my guess is FT4.

Different labs ref ranges vary slightly but typical serum ranges are (from British Thyroid Association's website):

TSH: 0.4 - 4.5

FT4: 9.0 - 25.0
TT4: 60 - 160

FT3: 3.5 - 7.8
TT3: 1.2 - 2.6

tsh were surpressed

This will mean <0.4 (less than 0.4). Mine has been for donkeys years but as long as FT4 is within range it should not be a problem. See my post #97 on page 5 about the quote from the book "Understanding Thyroid Disorders". This will explain why this is acceptable.

my ts4 was ok, when I asked what ok was I was told within guides, so I asked what well within guide was????

If he has an actual number for this test result and you have asked for it he should give it to you, it is your right to know it if you want to. But again, ts4 is not a test, find out what this test is also.

then I got told I needed to see a skin specialist for my loss of hair

OK, go along with it. Let him arrange it. Chances are your skin specialist will say there is no apparent reason for your hair loss and it could very well be connected with your thyroid. You would be surprised how many people have been referred to other specialists for their symptoms only for that specialist to confirm that their symptoms are caused by hypothyroidism - quite a lot of people have been diagnosed that way!

I have been told to reduce my tablets to 75mg.

If your results are within range there is no need. OK your TSH is suppressed but if your FT4 is not over the top of range there is no need to reduce your dose - see the book I mentioned, buy it from your pharmacy for about £4.75, it will be the best money you have ever spent and your best friend when talking to your GP.

Any help as I don`t understand the readings would be appreciated.

My post #93 on page 5 explains this, as already mentioned in my reply #107 to an earlier post of yours

[melbury]

If your results are within range there is no need. OK your TSH is suppressed but if your FT4 is not over the top of range there is no need to reduce your dose - see the book I mentioned, buy it from your pharmacy for about £4.75, it will be the best money you have ever spent and your best friend when talking to your GP.




What is this book called please and do all pharmacies sell it?

I am still getting the hot flushes - even on the Eltroxin. I don't care what the doctor says, I wasn't having any before I was put on this medication. Also I was told my oestrogen levels were perfectly normal when they did the original blood tests a few months ago, so something must have happened to change this.

Sorry, have just found the title higher up the post.

[Ellie2758]

I have been on thyroxine for about 10 years now. I have never been referred to an endocrinologist but luckily my GP is very good and will go by symptoms rather than test results. However, I did not realise that there were different brands of thyroxine. Or that after years of taking thyroxine it could become less effective.

It definitely hasnt hastened my menopause but it did have an effect (bad) on the severe mid-cycle pain that I suffered for 13 years :(

I was lucky to be diagnosed really as I have never had the problem of putting on weight, but I have always felt the cold even as a child. The only symptom I mentioned was tiredness but since I had a two year old and a disabled 5 year old at the time I think it was pretty smart of my GP to suggest it could be my thyroid.

[TomsMom]

I am still getting the hot flushes - even on the Eltroxin.

You have only just changed back to Eltroxin haven't you, last week wasn't it? I explained about how long thyroxine stays in the body - it's half life, and how it will take a few weeks for all the previous thyroxine to disappear. Your body hasn't yet got rid of all of the other brand yet so if there's going to be a noticeable difference with Eltroxin then your body has not yet got purely Eltroxin but a mixture of the two so you will have to be patient a while longer to see if those symptoms eventually disappear.



Also I was told my oestrogen levels were perfectly normal when they did the original blood tests a few months ago, so something must have happened to change this.

What is your age? Are you near menopause? If so your hormones could be changing. When was the last test done? You could always ask your doc for another hormone test if you think it could be this.

[TomsMom]

For all those who have been querying blood test results, brands of thyroxine and problems with getting GPs to acknowledge your symptoms, I'm hoping the following will help.

I've already mentioned the book "Understanding Thyroid Disorders" which is available from most pharmacies, current price is £4.75 I think. This book is written by the well respected Dr Anthony Toft, Consultant Physician and Endocrinologist at the Royal Infirmary, Edinburgh.

I've already mentioned that this book can be your best friend when talking to your GP. Why? Because Dr Toft is an NHS consultant and endocrinologist so the NHS is not going to argue with it's own!

The book can be viewed and downloaded here http://www.familydoctor.co.uk/onlinebooks/Thyroid.pdf
You might not want to print it off as it has 131 pages including pages for your own notes. I would suggest that it is best to have your own copy of this quite small book and mark any relevant pages and take it with you to your appointments.

This is an updated version of the one I have so there is revised information in it which is better than my version.

As everyone is different the information in the book applies to the majority of patients, there are always some exceptions, but if they apply to you these extracts should help (I'm sure you may find more). Some I've mentioned in another post but I've repeated here to keep it all together. There is a lot of other information (not touched on here) so it's a good idea to read the whole book.

Page 84 JUDGING THE CORRECT DOSE OF THYROXINE discusses blood test results

"Your GP or thyroid or thyroid specialist will usually prescribe a dose of thyroxine that raises the FT4 and TT4 to the upper part of the normal range and reduces the TSH level in the blood to the lower part of the normal range. Typical results would be FT4 of 24pmol/l or TT4 of 140nmol/l, and a TSH of 0.2mU/l. In some patients, a sense of well being is achieved only when FT4 or TT4 is raised, e.g. 30pmol/l or 170nmol/l, and TSH low or undetectable. In this circumstance it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism. Failure to take thyroxine regularly is very obvious from blood test results."

This clearly shows that for some people their blood levels need to show overactive before they feel well.

"Thyroid blood tests should not be taken in isolation and correct medical care will also depend on careful assessment of symptoms and clinical examination."


Page 42-43 CHANGE TO YOUR USUAL DOSE OF THYROXINE deals with generic brands

"Thyroxine is now manufactured in the UK by a variety of companies. This is known as generic thyroxine and, despite rigorous controls, doctors and patients have noticed from blood test results and from symptoms that there may be a variation in tablet strength between different manufacturers. For this reason, it is wise to insist that the same make of thyroxine is dispensed by the pharmacist when you renew the prescription. If it is not possible to provide the same make, you should consider having a blood test some six to eight weeks after starting the new preparation."

Pages 43-44 POSSIBLE FUTURE TREATMENT discusses addition of T3

"Most people with hypothyroidism feel perfectly well while taking an appropriate amount of thyroxine, as judged by measurement of T4 and TSH in the blood. However, some patients do not achieve the sense of wellbeing expected, even if a little extra thyroxine is taken, which results in a low rather than a normal TSH level. If you are one of this small group of patients, there is some evidence, which needs to be confirmed, that a combination of thyroxine and the other thyroid hormone, T3 (triiodothyronine), may be beneficial. If you change to this combined treatment, the dose of thyroxine should be reduced by 25-50mcg and 10mcg of T3 (liothyronine) added."

and

"It makes sense to replace what is missing when the thyroid gland stops working and the ideal replacement tablet would contain about 100mcg T4 and 10mcg T3, the latter in a slow release form. This would avoid peak levels of T3 in the blood after taking the medication, which can produce troublesom palpitations. Unfortunately such an ideal medicine has not yet been produced by the pharmaceutical industry."

I think these points address a lot of the questions that have occurred in this thread and reading the book could well answer others that people have.

I hope it helps some of you in getting the help you need from your doctor and back on the road to feeling more normal.

[melbury]

[quote=TomsMom;10424831
What is your age? Are you near menopause? If so your hormones could be changing. When was the last test done? You could always ask your doc for another hormone test if you think it could be this.
[/QUOTE]

Yes I am undoubtedly near the menopause as I am 53. Trouble is I can't tell the from the usual way of periods stopping, as I had a hysterectomy five years ago! Last hormone test was done around Christmas and that is when I was told oestrogen levels were normal.

It just seems to me that it would be a very big coincidence indeed that menopause should kick in at the exact same time as my thyroxine does was upped to 100mcgs:confused:

[TomsMom]

Yes I am undoubtedly near the menopause as I am 53. Trouble is I can't tell the from the usual way of periods stopping, as I had a hysterectomy five years ago! Last hormone test was done around Christmas and that is when I was told oestrogen levels were normal.

It just seems to me that it would be a very big coincidence indeed that menopause should kick in at the exact same time as my thyroxine does was upped to 100mcgs:confused:

Just out of interest, did you go on HRT?

This is some information about HRT and thyroid medication (which may or may not be relevant in your case)

Oestrogen

Any oestrogen raises the levels although thyroid activity is unchanged. This could make your levels look within the normal range, whereas they are really below it. Oestrogen provides more of the transport protein, making the hormone inactive. After starting on any oestrogen therapy, a woman should always have TSH tested to see if the oestrogen is having an impact on overall TSH and thyroid function and might require a dosage adjustment.
Prempak C/Premanin etc. – HRT made from mares urine and interferes with thyroid availability.

Also, if you are going to have symptoms of the menopause then you really are just about the right age to be having them and it just could be a coincidence.

[poppy_f1]

well for me it seems like the tyhroxine seems to be kicking in, have a bit more energy and not feeling as tired as much, was at the docs yesterday and he said my levels had improved(cant remember what they were) and he wanted to keep me on the same dosage at the moment and to have repeat bloods taken in 2 months
imonly on 25mg of lethyroxine not 50 as i first thought but happier that its finally been sorted out, the doc thinks i've had this since i was about 16/17 (31 this year) and it explains the 3 stone weight gain in 3 months when i was 18 which we had originally put down to the contraceptive jag

[melbury]

Just out of interest, did you go on HRT?

Also, if you are going to have symptoms of the menopause then you really are just about the right age to be having them and it just could be a coincidence.

Thanks for the information, I thought that perhaps because of my age the thyroxine was interfering with my oestrogen levels, but from what you say it doesn't. No I haven't ever taken HRT because until now I haven't had any symptoms of menopause. GP did say that if I want he will prescribe HRT, but I don't think I want to go down that road at the moment. I hate taking tablets of any sort and am only just getting to grips with having to be on thyroxine for evermore.

Don't know if I have mentioned this before, but the heart palps seem to have stopped over the past week, even though I was told they were absolutely nothing to do with having an underactive thyroid!

[TomsMom]

Don't know if I have mentioned this before, but the heart palps seem to have stopped over the past week, even though I was told they were absolutely nothing to do with having an underactive thyroid!


That's interesting melbury, and good news. Make sure you keep a diary of all these changes, however insignificant they may seem, note your symptoms, include dates etc. so you can relate to when they happened, what meds you were on etc. It all helps when talking to your GP.

For example, you may be able to say something along the lines of "I noticed that after changing to Eltroxin, after X number of weeks the palpitations disappeared and I've not had them since. They were very noticeable whilst on Brand Y. I've also noticed ....blah blah.... so as far as I'm concerned I do feel that Eltroxin suits me better than any other type of thyroxine so could you please name it on my prescription so that I may stay on it."

You'll see from my above post that the difference is brands is now documented by a leading NHS thyroid specialist in the most recent version of Understanding Thyroid Disorders and that should back up anything you have noticed with a different brand when discussing with your GP.

I hope things continue to get better for you.

[kassikoo]

Hi Ladies i seem to have energy in the morning up till lunchish then i get suddenly tired and weak and irritable i am waiting for my antibodies and diabetes test to come back at the mo i feel i want to ask my GP for more thyroxine but i am scared of going over,i take 75mcgs now my TSH is 2.69 at the min but with my symptoms it makes me wonder if i need more, can anyone give me any advise please love Kassikoo:eek:

[TomsMom]

Hi Ladies i seem to have energy in the morning up till lunchish then i get suddenly tired and weak and irritable i am waiting for my antibodies and diabetes test to come back at the mo i feel i want to ask my GP for more thyroxine but i am scared of going over,i take 75mcgs now my TSH is 2.69 at the min but with my symptoms it makes me wonder if i need more, can anyone give me any advise please love Kassikoo:eek:


If you are getting tired and weak before lunch it sounds more like a drop in blood sugar levels. Low GI foods contribute to sustained energy levels and leave us feeling satisfied and full after eating.

So breakfast could be porridge or a banana yoghurt and milk smoothie, wholegrain toast with banana or a couple of boiled eggs, muesli with yoghurt. Snacks could be dried fruits, fresh fruit, yoghurt.

If it's after lunch then a more satisfying lunch with low GI foods would help.

Wait and see the results of your tests.

As for your thyroxine and blood tests, take a look at my post #161 at the top of this page as I've added some more information, and getting the book would be helpful.

[ms_london]

A fab website I have found:

www.stopthethyroidmadness.com (http://www.stopthethyroidmadness.com)

There is a forum on there too, but not on the main site, its via another link on the site.

Really really helpful and great to chat to others with the same conditions xx

[saraho]

This is really interesting reading... I've recently been diagnosed and put on a low dose of Thyroxine (25mcgs), which has brought my TSH levels down from 7.6 to 5.9. My doctor says this is the healthy range, so I should stay on this dose. However, I'm starting to get a lot of the symptoms again (tiredness, feeling the cold and dry skin in particular), and it seems that 5.9 is considered high. Should I ask for a second opinion/retest ?

[TomsMom]

This is really interesting reading... I've recently been diagnosed and put on a low dose of Thyroxine (25mcgs), which has brought my TSH levels down from 7.6 to 5.9. My doctor says this is the healthy range, so I should stay on this dose. However, I'm starting to get a lot of the symptoms again (tiredness, feeling the cold and dry skin in particular), and it seems that 5.9 is considered high. Should I ask for a second opinion/retest ?


Page 5 of this thread, post #93 gives approx ref ranges and explains where most people are best.

Your TSH is probably still outside the range and needs to be lower. If your GP is saying "this is the healthy range" ask him what the ref range is for the lab he uses. I would put money on you being over the top of range.

Most people are started on 25mcgs thyroxine and retests are usually done about 8 weeks later, then every couple of months until GP is happy with test result (in range) and patient is relieved of symptoms.

See post #161 on this page about the book Understanding Thyroid Disorders, consider buying it and take it to your appointment so that you can discuss the relevant parts with your GP about where people should be within the range.

If you are not feeling well and still experiencing symptoms on your present level of thyroxine then you and your GP should work together to get you well again.

[saraho]

Hiya. Thanks for that ! Yes, the test where TSH had gone down to 5.9 was done 6 weeks (I think) after starting on the low dose. I have had a quick look at the suggested book (downloaded the pdf), and think I may be classified as subclinical as I think my T4 test result was 13 when that was tested previously... I don't know if that's relevant, as I guess it's still possible to have symptoms even if you're subclinical ?

[moneysaving pharmacist]

A fab website I have found:

www.stopthethyroidmadness.com (http://www.stopthethyroidmadness.com)

There is a forum on there too, but not on the main site, its via another link on the site.

Really really helpful and great to chat to others with the same conditions xx

There are good, sensible patient websites out there for most conditions. There are also some not so sensible sites. This site seems to fall into the second category - the following 2 paragraphs give you a flavour of the site:

You can cite all the research you want!
You can quote all the statistics you desire!
You can refer to all the medical reviews you know!!
You can even make spurious claims against the efficacy, stability and reliability of desiccated thyroid like Armour. BUT NONE OF IT is more important and revealing than the REAL LIFE EXPERIENCES (http://www.stopthethyroidmadness.com/stories-of-others/) of lives profoundly changed due to desiccated natural thyroid hormones, as well as dosing by symptom elimination first and foremost, NOT black ink marks on a piece of paper called the TSH lab result!Now I'm not saying that patient experience isn't important - it is, but it's at the bottom of the evidence heirachy.

The British Thyroid Foundation has a far more sensible and balanced position on the use of Armour: www.btf- (http://www.btf-)thyroid.org/main_frame/pages/armour_statement.htm

[TomsMom]

The British Thyroid Foundation has a far more sensible and balanced position on the use of Armour: www.btf- (http://www.btf-)thyroid.org/main_frame/pages/armour_statement.htm


Unfortunately the BTF is using very old information of an alleged problem over 30 years ago.

Desiccated thyroid extract is not currently licensed in the UK and was withdrawn from use in the UK in the 1970s after synthetic thyroxine had been developed. At that time there was perceived to be a problem with the quality control of thyroid extract with large variations from batch to batch, due to the variation in T4 (thyroxine) and T3 (triiodothyronine) that it contained.

Forest Pharmaceuticals, who make Armour Thyroid, have very strict quality control. During the manufacturing process, since the amount of thyroid hormone present in the thyroid gland may vary from animal to animal, the T4 and T3 are measured in both the raw material and in the actual tablets. This ensures that Armour Thyroid tablets are the same from tablet to tablet.

BTF are happy to point out problems from over 30 years ago but are not so keen to let people know that there are no problems with quality or potency of Armour now. So not really all that balanced.

[TomsMom]

Hiya. Thanks for that ! Yes, the test where TSH had gone down to 5.9 was done 6 weeks (I think) after starting on the low dose. I have had a quick look at the suggested book (downloaded the pdf), and think I may be classified as subclinical as I think my T4 test result was 13 when that was tested previously... I don't know if that's relevant, as I guess it's still possible to have symptoms even if you're subclinical ?

What makes you say you may be classified as subclinical? Subclinical hypothyroidism is where the patient doesn't actually have any particular symptoms or signs, and may not feel unwell at all. Did you go to the GP with no symptoms of hypothyroidism but for something else and he did a blood test and it showed you were hypo? If not and you went with symptoms and he did the tests because of the symptoms then it can't be subclinical.

Whether you're subclinical or not, your FT4 at 13 is very very low (look at the ref ranges mentioned in post #93 then compare it with what Dr Toft says on page 84 of his book). If you are having hypo symptoms with a TSH of 5.9 and FT4 of 13 then according to Dr Toft (and your symptoms) you are hypothyroid and need more than 25mcgs thyroxine. Your GP really should do the FT4 test every time he does TSH and take both into account, TSH on it's own is not the best indicator. As you are experiencing symptoms I would ask for repeats of both tests then discuss the new results with your GP and take Dr Toft's book with you if you feel it is relevant.

[saraho]

I didn't actually go to the doctor with symptoms - it was kind of found by accident (testing due to having vitiligo and a family history of autoimmune disease), but in hindsight I thought it could explain the tiredness, sensitivity to the cold etc I had been experiencing recently.
I just thought that, as a T4 result of 13 was 'in the range' (although at the low end), it was sublicnical as TSH is (slightly) elevated but T4 is 'normal' (as per page 83 in the book).
Anyway, thanks for the advice. I'm going to make another appointment with my doctor to discuss, as I have been feeling worse recently.
Thank you !

[melbury]

My heart palps have come back with a vengence over the past few days and I was so sure that the thyroxine had cured them, so really feeling fed up. Have been on the 100mcgs dose for about a month now but don't feel any different and certaily not losing any weight, which is depressing.

Hot flushes are awful and I haven't had a decent nights sleep for ages because of waking up hot and sweaty - ugh! I still think there is a link between starting on the thyroxine and the hot flushes - as I have said before not a single menopause symptom before then.

Have been researching a lot about HRT, but that makes scary reading. Basically came to the conclusion that if you can manage without it then don't take it. Also I would have to take the oestrogen only one due to having had a hysterectomy and sounds like this increases the risk of ovarian cancer:eek: :eek: :eek:

Does anybody know of any good natural cures for hot flushes??? Many thanks.

[TomsMom]

Hi Melbury

Have you had a hormone test in connection with menopause?

The private thyroid doctors frequently suggest natural progesterone cream for pre and menopausal ladies.

It might be useful to read about progesterone here http://www.npis.info/introduction.htm (Natural Progesterone Information Service), particularly HRT-where do we go from here? and Menopause the natural way. Also go to FAQ and if you scroll down to almost the bottom of the page there is the question Can I take use natural progesterone after a hysterectomy?

Don't confuse natural progesterone with wild yam cream, they are not the same, nor progestin which is the synthetic form.

Hope that helps.

[melbury]

Hi Melbury

Have you had a hormone test in connection with menopause?

The private thyroid doctors frequently suggest natural progesterone cream for pre and menopausal ladies.

It might be useful to read about progesterone here http://www.npis.info/introduction.htm (Natural Progesterone Information Service), particularly HRT-where do we go from here? and Menopause the natural way. Also go to FAQ and if you scroll down to almost the bottom of the page there is the question Can I take use natural progesterone after a hysterectomy?

Don't confuse natural progesterone with wild yam cream, they are not the same, nor progestin which is the synthetic form.

Hope that helps.

Thanks for this information, have had a quick look and will definitely spend some time this weekend reading it all. As previously mentioned, had oestrogen levels tested at Christmas time and was told absolutely fine, so don't know where it has all disappeared to. Progesterone theory sounds very plausible, just don't know why doctors in this country are so narrow minded and will only stick to their text book remedies:mad: I don't want to take HRT, I think one synthetic hormone is plenty - personally I wouldn't mind trying the piggie pills, but getting hold of them seems very difficult.

I wonder where you can buy natural progesterone???

[TomsMom]

personally I wouldn't mind trying the piggie pills, but getting hold of them seems very difficult.

It is possible, but quite difficult, to get Armour Thyroid (piggie pills) on the NHS. You need a doctor who is willing to allow you to try them (of course, they have to believe they will help first and will need convincing that synthetic thyroxine is not helping you) then I think the PCT has to authorise the cost (?).

This info is from Thyroid UK's website:

According to the MHRA, in the UK a GP is allowed to prescribe any of the natural thyroids on a "named patient basis" on the NHS or privately. Your doctor can give you a normal green prescription (FP10) and write Armour Thyroid on it, (or any of the others) then your local chemist can contact: Idis World Medicines, Millbank House, 171-185 Ewell Road, Surbiton, Surrey KT6 6AX. Tel: 020 8410 0700/ Fax: 020 8410 0800. Email: prodinfo@idis.co.uk or idis@idis.co.uk for orders. Website: http://www.idis.co.uk. If your doctor or pharmacist needs information from them, they must set up an account first, but they are not obliged to purchase anything. You just need to persuade your doctor that you need Armour because the synthetic hormone does not suit you. Ask him for a trial, at least. This company import Armour and add a very small administration charge.

Forest Pharmaceuticals Inc in America make Armour and they are very helpful. They will send your doctor any information he requires.




I wonder where you can buy natural progesterone???

On the internet. There are a few brands. Serenity from Wellsprings. Natpro is an organic one and there is Pro-gest. I think possibly Pro-gest is the more well known one.

[melbury]

:

On the internet. There are a few brands. Serenity from Wellsprings. Natpro is an organic one and there is Pro-gest. I think possibly Pro-gest is the more well known one.

Thanks for the information, think I will order some Pro-gest as it sounds about the best. Perhaps it would be wise to wait until I have had my next blood test for thyroid.

On reading further about natural progesterone, it says that all of your body's hormones are inter-linked and controlled by the pituitary gland and so perhaps one failing does have an impact on another one. Don't really know for sure, but food for thought.

Have started a new thread asking if anybody on the site has actually tried natural progesterone cream. All of the serious medical reviews that I have found are pretty negative about it and basically say it doesn't work. Is it the old "if it sounds to good to be true, then it probably is?"

[melbury]

I have seen Phyto Soya tablets advertised that are supposed to help with menopause symptoms. I read somewhere though that soya is not a good thing to have if you suffer from thyroid problems. Wouldit be OK to give these a try as well as the natural progesterone cream?

[TomsMom]

I have seen Phyto Soya tablets advertised that are supposed to help with menopause symptoms. I read somewhere though that soya is not a good thing to have if you suffer from thyroid problems. Wouldit be OK to give these a try as well as the natural progesterone cream?


From the NHS site clinicalanswers.nhs.uk which is the Primary Care Question Answering Service

Q. Is there any evidence that soya may affect levothyroxine levels

A. We found a number of articles that discuss a possible connection.

“Administration of levothyroxine concurrently with a soy protein dietary supplement results in decreased absorption of levothyroxine and the need for higher oral doses of levothyroxine to attain therapeutic serum thyroid hormone levels.”

“No direct evidence suggests that people with underactive thyroid (hypothyroidism) should avoid soy foods or supplements. But it's possible that eating large amounts of soy could reduce your body's ability to absorb the synthetic thyroid hormone levothyroxine.”

Also soya is a phytoestrogen. Oestrogen has already been mentioned:

Oestrogen

Any oestrogen raises the levels although thyroid activity is unchanged. This could make your levels look within the normal range, whereas they are really below it. Oestrogen provides more of the transport protein, making the hormone inactive. After starting on any oestrogen therapy, a woman should always have TSH tested to see if the oestrogen is having an impact on overall TSH and thyroid function and might require a dosage adjustment.

And millet soya is a goitrogenic food:

FOODS TO BE AWARE OF:

“Goitrogenic Foods” Goitrogenic foods can act like an antithyroid drug in disabling the thyroid function. They prevent the thyroid from using available iodine. It is made worse if you use a lot of salt because that causes the thyroid to swell. Do not eat these in large amounts if you are taking thyroid hormone replacement. It is thought that the enzymes involved in the formation of goitrogenic materials in plants can be destroyed by cooking, so cook these foods thoroughly if you want to eat them.

brussel sprouts, rutabaga, turnips, cauliflower, cabbage and kale almonds, peanuts and walnuts sweet corn, sorghum and millet soya – this combined with a high fibre diet causes too much thyroid hormone and iodine to be excreted from the body

raw Swedes, turnips and kale - These are sometimes fed to cattle and comes to us via their milk products.

Also

Would it be OK to give these a try as well as the natural progesterone cream?

If you start both at the same time, if you see an improvement how do you know which one is helping? When trying any type of supplement, however applied, i.e. topically or orally, you should try one at a time, giving it about 3 months or so to take effect and then see if it helps. If not you can then try something else.

There is no guarantee that any of these things will help but to avoid any confusion of which, if any, are helping they need to be trialled separately.

[h007]

hi guys,
this thread is a very interesting read. i have recently had a blood test for my thyroid levels as well as to check my hormones and for diabetes after going to the docs. i was all calm and collected but then just burst into tears while telling him i have no energy, feel cold all the time, i sleep loads, very dry skin, acne on back and chest etc
he was very nice and ordered me loads of tests straight away. is it strange that i am half hoping there really is something wrong with me? its just that if there is there is probably a way to fix it.
sorry for going on abit. it is just nice to tell this to people who probably understand, should be getting my results next week and if there is something wrong with thyroid i will be back on here!

[TomsMom]

he was very nice and ordered me loads of tests straight away. is it strange that i am half hoping there really is something wrong with me? its just that if there is there is probably a way to fix it.


Not at all. The way I look at it is you know there is something wrong as you have symptoms. If you have a diagnosis then it stops you imagining all sorts of things (and most people tend to imagine the worst), and once you know what is wrong you will get treatment that will hopefully put you on the road to recovery.

[cheepskate]

Hi All
Just found this thread and hopefully someone can help.

I was diagnosed with under active thyroid about 3 years ago , my TSH was 258, i was in the primary stages of a moxodema coma(sorry not correct spelling) .
As you can imagine my symptoms were severe and would take quite a considerable time to get better.
After 1 year thyroid tsh ok but symptoms not better and was dignosed with fibromyalgia.

It is now 3 years since diagnosed and am on 150 mg thyroxin., Doctors a bit hopeless and most of the time will say he doesnt know why my symptomns are still so bad or why i can take severe mental phsicos (sp)type symptoms like i did when originally diagnosed.

I am due to get bloods taken again , and all should come back as tsh 1. so doc says all ok.
I beleive from what i read and hear that the problems still stem from my thyroid and not the fibromyalgis.

How do i go about this to the doc , as he say my thyroid ok cos score comes back ok, so it is not my thyroid.

Hopefully someone can help.
thanks

[hopeiwin]

Im 24 and have an under active thyroid, ive been diagnosed for just over a year. im currently on 125mgs. I have terrible mood swings at times and just don't want to talk to anyone. Im constantly gaining weight as well and i hardly eat anything. Does anyone have any advise?

[TomsMom]

How do i go about this to the doc , as he say my thyroid ok cos score comes back ok, so it is not my thyroid.




Is he only testing TSH?

If so, ask for FT4 as well, also see if you can get FT3 done (but doubtful).

Are you seeing your GP or are you under an endo? I would have thought an endo would do more than TSH.

It's possible that thyroxine (t4) only is not enough for you as some people need the addition of some T3 - explained in the book Understanding Thyroid Disorders mentioned in an earlier reply but you'd need to see what your bloods are first.

[melbury]

TomsMum

Thank you so much for the detailed reply, I guess you are right and it would be stupid to start taking more than one thing at a time. It is just that these hot flushes/night sweats are driving me insane:mad: :mad: I haven't had a good nights sleep for such a long time - can't remember what one is like.

Perhaps it would be sensible to try the natural progesterone first and all of the horrible symptoms will just disappear - I wish!

[melbury]

TomsMum

Perhaps you can help with this.......

I have bought some Sage capsules because I have read that Sage can really help with hot flushes and sweats.

It will be OK to just start taking these won't it? Sage wouldn't have any affect on the thyroxine would it?

I am just so desperate to get a good nights sleep, I just have to try something:mad:

Any feedback would be appreciated.

Thanks.

[TomsMom]

TomsMum

Perhaps you can help with this.......

I have bought some Sage capsules because I have read that Sage can really help with hot flushes and sweats.

It will be OK to just start taking these won't it? Sage wouldn't have any affect on the thyroxine would it?

I am just so desperate to get a good nights sleep, I just have to try something:mad:

Any feedback would be appreciated.

Thanks.



Sorry Melbury, I don't know. I am fortunate in that I have not really suffered any menopausal symptoms so have not had to try to find any remedies for them. All I can suggest is that you research, perhaps Google, sage and bear in mind things that can affect the the thyroid or the uptake of thyroxine - there is a section on problem drugs and food on Thyroid UK under Treatment. Sage isn't mentioned in particular but I believe it may be linked to phyto oestrogens, you'll need to check.

When you say you need a good night's sleep, is it the flushes and sweats that are preventing you? Or is it something else? I haven't slept well for years but I have the sort of mind that finds it hard to switch off.

[melbury]

Sorry Melbury, I don't know. I am fortunate in that I have not really suffered any menopausal symptoms so have not had to try to find any remedies for them. All I can suggest is that you research, perhaps Google, sage and bear in mind things that can affect the the thyroid or the uptake of thyroxine - there is a section on problem drugs and food on Thyroid UK under Treatment. Sage isn't mentioned in particular but I believe it may be linked to phyto oestrogens, you'll need to check.

When you say you need a good night's sleep, is it the flushes and sweats that are preventing you? Or is it something else? I haven't slept well for years but I have the sort of mind that finds it hard to switch off.


Thanks TomsMom. I have done quite a lot of research but can't find anything definitive in relation to sage and thyroxine. Anyway I have taken two tablets, so hopefully it will be OK - it is just a herb after all.

It is the flushes and sweats that disrupt my sleep. I wake up about every two hours really hot and then it takes a while to get back to sleep each time. I was reading about Sage capsules yesterday and it sounds like they really work for some people with the hot flushes. That is the problem with all of these natural remedies though, they don't work for everyone.

[gingababe]

Update, been to see the skin specialist that my G.P referred me to, & what a waste of space that was, I went because of my hair loss & spotty face & dry skin everywhere else. Well he told me it was nothing to do with my thyroid, it was more likely my age (I'm 33) & possibly was being caused by my contraception method ( not using as trying for a 2nd baby) he said"what do you want to do that for?" discharged me after he sat there laughing. I feel that it was a waste of my time & his.....
I am worried about my hair & skin, as my hair is getting drier & thinner, & my face is getting spottier.....
Thanks
Ginga
Sorry to babble.

[mk wotsit]

My 19 yr old daughter has had depression for 3 years now. She is very withdrawn from the family and won't confide in us.Her dad and I are worried sick but she just gets distressed if we ask to many questions and 'interfere'.
She has finally been referred to the hospital for counselling and on the advice of someone at the mental health centre, she has just had blood taken to check her Thyroid levels.
After reading this thread and some of the websites suggested, I can see she has quite a lot of the symptoms:

Depression, low self esteem, anxiety, self-harmed in the past, mood swings
Dry itchy skin or itchy bumps mainly on her legs,arms or back which she scratches until they bleed
Yellow or sallow skin, acne on her face and back,
Poor vision
Wierd sleep patterns
Pain in her neck and shoulders
Intolerance to cold
Flaky nails and quite a lot of hair loss when she washes it

In a way , I really hope that she does have this illness , then at least she will have a reason for feeling so awful and some hope that she'll get better. Her depression and skin problems are not getting any better and it's so upsetting to see her so unhappy at what should be a happy time of her life. She's off to uni in Sept and I worry how she'll cope.
....do mum's ever stop worrying? :o
I'll post next week when the results are back.

[chrissy3634]

My husband went to see GP with vague addominal/bowel discomfort. He's not been to Docs for 12 years before that.The Doc did some blood tests and hes been diagnosed (April) with severe hypothyriodism - on 50 microgms.Hes been referred to gastroenterologist and is now waiting for Gastroscopy + colonoscopy.I'm worried sick. Does anyone know if Gastro intestinal prroblems could be related to the under active thyroid.Thank you Chrissy

[mk wotsit]

Looks like they could be. Have a look at the checklist on this site: :D

http://www.tpa-uk.org.uk/symptoms_hypot.php

[chrissy3634]

I'm sure I saw a post where you can contact someone who is part of a self help group but I can't find it.Please can anyone help.Cheers Chrissy

[jeannieblue]

Hey,

you have to check this website out, its got Tiffany & Co jewerly at mega cheap prices, starting from £10.00

freewebs . com/tiffanyandcowholesale

Tell me what you think.
Any board guides around to get rid of this twerp? On pretty much every thread trying to flog cheap jewellery - a word I can spell and they can't :rotfl: :rotfl: :rotfl: :rotfl: :rotfl:

[chrissy3634]

Hoping TomsMum reads this.My husbands TSH was 100 - now down to 78.Just had a letter from hospital - dose of thyroxine needs increasing.Hubby is seeing GP later today.I'm just hoping that his Bowel problems and iron deficiency anaemia are due to hypothyroidism and not anything more seious.I'll be glad when hes had endoscopies done!Chrissy

[mk wotsit]

DDs Thyroid levels were normal?! :confused:
Hope your hubby is OK Chrissy!

[Ginaapple]

Hi

I was diagnosed about 8 months ago, have lost 4 stone and feel brilliant but would not have done without the help of the Thyroid patient advocacy group in Yahoo it is a brilliant site and the people on it are very knowledgable about the disease please try it and pass on this info to anyone else who needs help on these forums. The link is
http://health.groups.yahoo.com/group/thyroidpatientadvocacy/

Good luck and hope to see you on there

Gina
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[Ginaapple]

Hi

Tried to download the book but the link would not let me. Are you a member of the TPA? It is a brilliant site and has loads of info on thyroid problems.

Gina

[suzukibabe]

I haven't had a chance to read all of the posts on this thread but the ones i have read have been very informative.

My DS2 was diagnosed with underactive thyroid in February- he's 7 months old but when he's older i will be able to explain more to him all about hypothyroidism thanks to this thread and the links on it.
His last blood test results were all up the chute but it was taken from his heel as they couldn't get a vein, his consultant isn't that worried about his result at the moment and she is personally going to take the next lot of blood.

[shetur]

"The British Thyroid Foundation has a far more sensible and balanced position on the use of Armour: www.btf- (http://www.btf-)thyroid.org/main_frame/pages/armour_statement.htm[/quote]"

Does the Pharmacist even know what he is talking about? Has the Pharmacist actually had any experience using Armour thyroid, USP? Has the Pharmacist done any research and looked at the studies to enable him/her to decide for her/himself whether the BTF has a far more sensible and balanced position on the use of Armour?

Both the British Thyroid Association (BTA) and the BTF have statements on their respective websites about the use of natural thyroid extract (Armour Thyroid, USP) and synthetic thyroxine (T4) and liothyronine (T3) therapy. Many of their statements are misleading, and in parts incorrect, and their Armour statement is backed with only ONE reference and their T4/T3 combination therapy statement they backed with only 3 references. What everything boils down to, in both their statements, is that they are really trying to make everybody BELIEVE that synthetic thyroxine is the ONLY medication that is needed for every hypothyroid sufferer on this earth:confused:

Thyroid Patient Advocacy-UK www.tpa-uk.org.uk (http://www.tpa-uk.org.uk) responded to the individual members of the Executive Committee of the BTA and BTF, and sent copies of this response to every NHS endocrinologist and every primary care trust, including several thyroid organisations and members of the Department of Health etc. The printing and postage was funded by members of TPA-UK forum, many of whom have had to leave paid employment because they are too sick to work - either because they have not been given a diagnosis (because their TFT's are within the reference interval) or they cannot regain their normal health on the NHS 'gold standard' medication using levothyroxine only.

Perhaps the Pharmacist would like to read the studies and research that show how misleading and in parts, incorrect, the BTA's and the BTF's statements are. The TPA-UK found almost 300 citations to back up their claims. Needless to say, that although the response from TPA to BTA was sent to them on 17th March 2008 asking them to update their statements accordingly, three months later, they have still not made the necessary corrections. Correct information therefore eludes the medical profession and the patient world in respect of the proper diagnosis and choice of treatment of hypothyroidism.

This is appalling, and it is the GP's, the endocrinologists and even, perhaps, the pharmacists who are coerced into discouraging their patients from having a trial of Armour Thyroid or synthetic T4/T3 combination therapy. They print out copies of the BTA Statements and when their patients ask for a trial, simply hand the copy to the patient saying "....this is the reason I will not recommend it..." - and they have failed to even check whether the information in the statement they are handing to their patient is correct or not. Shame on them!

Shame on them also, because the poor doctor, who is desperately wanting to help his patient regain his/her health, is terrified to go outside the mainstream diagnosing and treatment protocol in case they, like other doctors who have dared to, will be reported to the GMC with the threat of having their livelihood taken away from them. Come out of your corner Big Pharma....

You can read the responses to the BTA et al here:

http://www.tpa-uk.org.uk/resp_bta_armour.pdf (http://www.tpa-uk.org.uk/resp_bta_armour.pdf) and http://www.tpa-uk.org.uk/resp_bta_t4t3.pdf (http://www.tpa-uk.org.uk/resp_bta_t4t3.pdf)

I personally do not consider that the BTF has a far more balanced approach in the use of Armour thyroid - perhaps the readers of the responses to their statements will make up their own minds. I hold the BTA first, and second, the BTF responsible for the thousands of hypothyroid sufferers who remain ill, with many symptoms because they are being prescribed T4 only and being denied T3 and Armour Thyroid. There are many people who are unable to convert the inactive hormone T4 through the liver to the active hormone T3. It is T3 that makes the body (and brain) function. Those lucky enough to be able to convert, then thyroxine alone is fine, but PLEASE think about those sufferers who, for many reasons, can't.

Look on the many Internet thyroid forums where you will see thousands of stories from patients who changed from synthetic thyroxine to natural Armour thyroid (which contains ALL the thyroid hormones a normal body requires) who are now living full and healthy lives, able to contribute once more to their country's wealth, in many cases, relinquishing the need to rely on State Benefit handouts, intergrating once again with their families and society at large.

Contrary to what the Pharmacist says, the BTA and the BTF DO NOT have a far more sensible and balanced position on the use of Armour.

Sheila
Thyroid Patient Advocate
www.tpa-uk.org.uk (http://www.tpa-uk.org.uk)

[shetur]

Hi Chrissy

Has your husband had his ferritin (stored iron) level tested. The reference range for men is somewhere in the region of 30 to 300 and his reading should be somewhere around the middle for him to feel well. If he has a very low ferritin, this can be a CAUSE of hypothyroidism, but in any case, with low ferritin his thyroid hormone replacement will not be able to be properly absorbed and he will not be getting the benefit he should from it. He would need to get this tested, and if low, to be prescribed elemental iron, such as Ferrous Sulphate 200mgs 3 x daily. Once his level has built up, his thyroxine should start to work better and he should in turn, start to feel much better.

Hypothyroidism causes constipation in many sufferers. If your husband needs iron, he must take it at least 3 to 4 hours away from his thyroxine, and it is best to take high doses of Vitamin C with his iron.

Sheila

[moneysaving pharmacist]

Sheila, I find it hard to take an organisation seriously when their website opens with 'the NHS is killing us'. It is also easy to make a document look impressive by peppering it liberbally with references as few people have the time to investigate them all.

And as for the involvement of big pharma, thyroxine literally costs pennies so there's not much profit to be made there.

[melbury]

[
quote=moneysaving pharmacist;12465479]
And as for the involvement of big pharma, thyroxine literally costs pennies so there's not much profit to be made there.



Is that why we get free prescriptions because it is so cheap?:D

Have read that Armour thyroid tabs don't suit everyone. Surely the thyroxine must be pretty effective as so many people are on it. I concede that there may be the odd case where it doesn't help, but these must be few and far between. Also, from what I have read, it sounds a very complicated process actually getting the piggie pills - if indeed you can get a GP to prescribe them in the first place.

[shetur]

"Sheila, I find it hard to take an organisation seriously when their website opens with 'the NHS is killing us'. It is also easy to make a document look impressive by peppering it liberbally with references as few people have the time to investigate them all."

You, and sadly, others might find it hard to take an organisation seriously enough when its website does, as you state, open with "The NHS is Killing Us". Perhaps if you joined some of the Internet thyroid forums, you might realise the truth in this statement and read some of the messages where sufferers are screaming out to be listened to instead of being ignored by the NHS and told to lose weight, pull themselves together, take antidepressants, and many, to stop wasting their doctors' time and get a life (yes, this is true).

As far as your remark regarding how easy it is to make a document look "impressive" with "peppering it liberally with references - with few people having the time to investigate them all"..all I can say is, how wonderful it would be if doctors investigated just a few. After all, as professionals it is their solemn duty to keep themselves up to date with advances in medical science. This is a very unhelpful remark and goes to show the problems we hypothyroid sufferers have when, even a pharmacist can be so dismissive of research and studies which prove how wrong the NHS diagnosiong and treatment protocol is in regard to this disease, and how wrong the BTA and BTF are in their statements on THEIR websites, regarding the treatment of hypothyroidism. How can you take their websites seriously?

If you find it hard to take our website seriously because it does open with "The NHS is Killing Us" - this is YOUR problem, but as I have indicated above, there are many sufferers out here who would endorse this statement emphatically. I have daily contact from sufferers whose treatment at the hands of their GP's/Endo's is appalling. My forum has very heavy traffic - from the 1st July to date, there have been over 1200 messages from members asking for help and support as they are being failed by their doctors.

(Quote)"And as for the involvement of big pharma, thyroxine literally costs pennies so there's not much profit to be made there".

As the NHS is failing to diagnose thousands of sufferers in the UK, they are not even being prescribed the medication that you say costs "pennies". Therefore, "cost" just does NOT come into the equation and is irrelevant.

As a consequence of this, other more expensive drugs are being prescribed to treat the common underlying symptoms. The dangerous consequences of low thyroid include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, and others.... all of which could have been dealt with if the proper diagnosis and treatment of hypothyroidism had been achieved.

Many thanks, at least, for taking the time to look at our website. I also hope that you now set aside some time, to study at least, a few of the references quoted, by way of self enlightement of this issue, otherwise, if professionals have little time to read reports, studies and research papers. what is the point of publication?:confused:


Sheila
www.tpa-uk.org.uk (http://www.tpa-uk.org.uk)

[shetur]

[

Have read that Armour thyroid tabs don't suit everyone. Surely the thyroxine must be pretty effective as so many people are on it. I concede that there may be the odd case where it doesn't help, but these must be few and far between. Also, from what I have read, it sounds a very complicated process actually getting the piggie pills - if indeed you can get a GP to prescribe them in the first place."

Armour does not suit everybody, in the same way that L-thyroxine doesn't suit everybody. However, the majority of sufferers do very well on L-thyroxine alone. I have no idea of the percentage, but it is high. Unfortunately, for a large minority of sufferers of hypothyroidism, they do not do well. There can be several reasons, but the main one is they are unable to convert the inactive thyroxine to the active hormone T3. T3 is needed by every cell in the body to make it functioln (and to make the brain function) and for such people, they need either a combination of synthetic T4/T3 or the natural thyroid extract Armour, because the latter contains all the thyroid hormones a normal body requires.

There have been rumours that natural thyroid extract is dangerous because it had potency problems in the past and that the T4 and T3 content was not standardised and differed in every batch. Doctors believed this was true and would not prescribe it (especially as the BTA/BTF tell them the same untruths too). Many doctors are now doing their own research and realising this is incorrect. Armour is not licensed because it has never required a license - it has never had problems that required it to go through the drugs licensing procedure (as was the case with synthetic thyroxine) and it was 'grandfathered' in. Natural thyroid extract has been used safely and effectively for over 100 years and was the only treatment until, during the middle of the 1970's the newly manufactured synthetic thyroxine became the 'gold standard' and Armour fell out of favour. If you are lucky enough to have an open minded doctor, one who has taken time to find the facts, then he can prescribe Armour for you within the NHS, but, because it remains unlicensed, has to take on this responsibility himself, because should you, or anybody else sue him/her if something goes wrong (as could go wrong with any medication) his/her medical insurance does not cover him/her :eek: .

Sheila

[kombucha]

I found this post in some ways helpful and have to say its thanks to google!

I had a tsh of 8.23 hormones in range and diagnoses compensated hypothyroidism last year from an endocrinologist, I am in the uk

The problem is I was aware of the acceptable levels of thyroid hormone in the rest of europe and america due to all the raging debate out there over what is "normal" and with the problems I have personally, it gave me a nervous breakdown on top of things

I seen Dr Barry Peatfield who I had communicated with several times and he recommended Isocort from the USA and two bovine glandulars from Nutri, one adrenal and the other thyroid that don't require prescription

I stopped the glandulars when they ran out and had my thyroid blood test repeated privately and had a TSH over 9 and raised ft4 and ft3

I carried on with the Isocort but stopped at the turn of this year.

Dr Peatfield had discussed with me and at this point recommended I take Cortef and follow it up with armour. The problem is there is no blood cortisol evidence of an adrenal problem with acth, cortisol and stim test although my response was a bit blunted a lot of things can cause this and I started high. It is a stressful condition!

I couldn't get Dr Peatfield to communicate with my GP although I was keeping him informed aswell. Everything was "in due course" that was as good as the Endocrinologist wanting to just repeat tsh every 3 months obsessing over the number 10 on a .4-4.5 range

The problem with Dr Peatfield is you feel you are talking about hydrocortisone steroids like smarties and although I was tempted I couldn't self medicate this or Armour in the end without some bloodwork and monitoring. Personally I can understand why thyroxine is considered the first choice treatment and if it doesn't do its job then look into other thyroid treatments :confused:

I seen a different Endocrinologist and had a clear mri scan to rule out pituitary tumour producing tsh and had the TRH stimulation test with an exuberrant response, my mum had an exaggerated response and also a raised baseline tsh. Sub alpha units and heterophilic antibodies interfering with the assay were also checked by the hospital

I feel now my problem has become a lot more difficult and don't know if those glandular supplements contributed because I have never taken thyroxine. I feel the same in my condition except the numbers of the thyroid hormones are more difficult to understand with a high tsh and how to treat it. I am waiting for a referral to a professor who specialises in thyroid hormone resistance but it is a rare biomedical finding mostly spotted at birth and then the thyroid hormone receptor genes are looked at for mutations

I currently go to hypnotherapy, long changed diet and you can tell from the username I am doing what I can to stay sane

Sheila it is interesting with Ferritin I had a result of 70 something and had it double that number last time checked probably due to changes I have made. It is a crazy ten fold range they use for what is optimal or even normal for this, Nevermind!

Your article at the BBC is right in the sense that in my case and probably several others getting the tests done properly for thyroid hormones in the first place. The nhs tsh tests carried out by my GP weren't very sensitive and they don't measure free thyroxine. Basically getting a tsh test from them is now considered meaningless for me that is from a GP themselves comparing tsh history. My mum was another example when checked in the hormone clinic

I read some of the British thyroid associations guidelines and its interesting the question of the upper range lowering to 3 and even 2.5 in some places was not considered because while acknowledging it they can not justify the amount of people that would require further investigation in the uk. So it is a bit political and has something to do with money you would think

I can't believe it takes so long to address a problem from a small gland in your neck that is so important to quality of life :wall:

[lrr]

Hi there, sorry to drag up this old thread but any advice appreciated. Underactive thyroid for years. Got all the usual symptoms - feeling cold all the time, dry skin, tired etc and to be honest have never really felt any better. Doctor has finally upped my dosage to 100mcg and due for a retest in a few weeks. However the one thing that really gets me down about having this - is my weight! Was usually around 10 stone but has steadily went up over the years and now has just went over 13 stone for the first time which im gutted about! Have tried everything over the years and nothing has worked. Eventually gave up my gym membership last year! Even put on weight when doing the slimfast plan - work that out? Anyway my question is - has anyone managed to lose weight as when I talk to the doctor about it he just says thats common and thats about it. Im only 35 and dont want to imagine what weight I will be when im 50! Im vegetarian, eat healthy-ish most of the time and lead a quite active life most of the time (even though I feel tired most of the time)
WHAT AM I DOING WRONG?

[TomsMom]

Hi lrr

It is not unusual for people with hypothyroidism to struggle to lose weight. Once you are on the optimum dose of thyroxine for you then your weight should stabilise.

Have you had any thyroid function tests lately, and if so what are the results?

If you can, read through this thread from the beginning and you will pick up quite a bit of information from the various posts. On page 9, in post #161, in the section JUDGING THE CORRECT DOSE OF THYROXINE, I have explained about blood tests results and what is generally considered to be "normal" although it has to be remembered that everyone is different and we don't all conform to the "norm". (The book I mentioned is very good and worth a look.)

After reading that and comparing your blood test results, you may be able to judge whether you think you are on your optimum dose of thyroxine or whether you may be undermedicated.

Also mentioned somewhere in this thread is the importance of making a note of all your blood test results so that you can look back and compare how you feel now and your symptoms to how you used to feel before.

You could also visit the ThyroidUK website, there is a checklist of symptoms. If you feel you are still experiencing symptoms then print off the checklist and make an appointment to discuss this with your doctor.

As far as him saying that being overweight is common, maybe it is with undermedicated or undiagnosed hypothyroidism, but if treated correctly and your thyroid is working properly again then your weight should get back to normal for you (as long as healthy eating means healthy and not including all the things we know, as individuals, make us put weight on - chocolate's my weakness ;) ) and should stay stable.

[lrr]

Thanks for the reply.
Yes read all the posts.
Been on new dose for just over 3 weeks so hopefully might kick-in soon and will get it checked again in December.
Heating on full blast and still feeling cold! (although DD is sweating to death!)
Mr Scottish Power will be loving it though!

[lrr]

Is there any particular diet that is good with underactive thyroid?

[TomsMom]

From Thyroid UK's website:

WEIGHT PROBLEMS
It has been found that diets low in fat and high in carbohydrate are not especially good for us after all! Some research suggests that a diet higher in protein is better for us and that we need some fats for metabolism. The Slimming World Red Day seems to fit in quite well with this. Low glycaemic and low carbohydrate diets seem to be the order of the day. See Diet Related Books for more information. Dr. John Briffa suggests taking supplements to help the regulation of insulin and aid carbohydrate metabolism. Glucogard is a mixture of the supplements he suggests.

also

FOODS TO BE AWARE OF:

“Goitrogenic Foods” Goitrogenic foods can act like an antithyroid drug in disabling the thyroid function. They prevent the thyroid from using available iodine. It is made worse if you use a lot of salt because that causes the thyroid to swell. Do not eat these in large amounts if you are taking thyroid hormone replacement. It is thought that the enzymes involved in the formation of goitrogenic materials in plants can be destroyed by cooking, so cook these foods thoroughly if you want to eat them.

brussel sprouts, rutabaga, turnips, cauliflower, cabbage and kale almonds, peanuts and walnuts sweet corn, sorghum and millet soya – this combined with a high fibre diet causes too much thyroid hormone and iodine to be excreted from the body

raw Swedes, turnips and kale - These are sometimes fed to cattle and comes to us via their milk products.

But at the end of the day your thyroid needs to be working adequately, i.e. the right dose of thyroxine needs to be prescribed.

[Mojisola]

Have a look over on
http://forums.moneysavingexpert.com/showthread.html?t=1011759

There's a range of low carb diets being followed - one will suit you, I'm sure.

[lrr]

Does the coldness finally go away when yours meds are ok? Ive been cold for years. Even when its scorching in Florida! Should I not accept being told all is fine from the doc in regard to blood tests when to be honest have not really felt any difference?

[TomsMom]

Does the coldness finally go away when yours meds are ok? Ive been cold for years. Even when its scorching in Florida!

It may improve. Even when my meds are at optimum level I find that I feel the cold a lot more than OH. I can sit in the lounge with the heating on and a jumper, OH can be in a short sleeve shirt. I need flannelette sheets on the bed all year round and the electric blanket on to take the chill off the sheets most of the year, OH never ever needs the electric blanket on. I think on the whole, most men don't feel the cold and most women do, hypothyroid or not! Unless of course you're menopausal and having a flush ;)

Should I not accept being told all is fine from the doc in regard to blood tests when to be honest have not really felt any difference?

This is where keeping a note of your previous blood tests results/dose/symptoms comes in handy as you can refer back to it. e.g.

Dr: Your blood tests are fine, carry on with the same dose.

You: But doc, I still feel tired all the time/my hair is still falling out/I'm still gaining weight/my skin is still dry and flaky, etc, etc.

Dr: But your blood tests say you are fine.

You: With all due respect doc, I really don't feel fine. If you remember, when I had my previous blood test I was on (say) 75mcg of thyroxine and my FT4 was (say) 17 and my TSH was (say) 5. Now my FT4 has gone down to (say) 15 and my TSH has gone up to (say) 6.5. It would appear that I'm not doing so well now on that dose. I really would like to get back to better health, it would make such a difference to my life. Would you please allow me to have a trial of a little extra thyroxine, say increase it to 100mcg daily? Of course, if I experience any problems I will come straight back to discuss it with you.

Or words to that effect.

So you see, if you have made a note of your results, dates, symptoms, you are in a good position to discuss this with your doctor. He will (hopefully) see that you are taking an interest in your condition and want to understand it. Arm yourself with knowledge so that you can have a serious discussion with your GP if you feel he is trying to fob you off. Test result numbers are not the be all and end all. How you feel should also be taken into account. It virtually states that in the book mentioned, Understanding Thyroid Disorders. That really can be your best friend when talking to your doctor and I urge you to get it and if necessary take it with you to your appointments.

Generally FT4 needs to be in the top quarter of the range. TSH needs to be nearer the bottom end of its range. Get the numbers, don't let them tell you that you don't need to know, you are entitled to know.

[lrr]

Excellent advice! Will ask for my results for the past 2 years anyway and compare. And will not get results over the phone from now on. Blood test not due again till end November so will keep you posted. Like I said in previous post, just been put up to 100mcg end September and I know it takes a few weeks to see a difference so will wait and see if any change.

[cassieannie]

I think you are right Duchy. I have had an underactive thyroid now for a couple of years. I have found out more on the thyroid websites than I have from a Dr. I have even noticed that our health centre does not have one poster up in their waiting room about the disease.yet they have everything else up in there !! I find this very interesting.

[melbury]

Question for TomsMum

Hi, haven't been on here for quite a while. My last results in August 2008 were as follows, which I think are quite good:

TSH 0.98
FT4 17.0
FT3 3.7

I seen to have stabilized on a dose of 125mcg per day.

However, I have noticed for the past few months that my boobs have been permanently rock hard and very tender - just like before a period. Could this be caused by thyroxine? Just thought that you may know something.

Thanks in advance.

[TomsMom]

Hi Melbury, long time no speak! Are you still off the ciggies :rotfl:

Your results seem to be in a good place. TSH fab! If you feel good then your FT4 and FT3 are right for you. Personally I need to be right at top of range for FT4 and maybe even a little over the top to feel OK. Just goes to show there is no hard and fast rule and everyone has their "sweet spot". Yours would appear to be mid-range at 17. As long as you feel OK then no need to do anything but continue on your present dose. It's good to hear that you stabilised, told you to be patient didn't I :D . Not having a go Melbury, just so good to hear that you got there in the end :T

Boobie bit - I haven't heard of thyroxine causing hard/tender boobs. IIRC you are menopausal. It's probably more likely to be caused by your female hormones doing funny things at this time. Obviously if you feel any lumps get them checked, otherwise a quick question to your GP about what might be causing this hardness/tenderness may put your mind at rest.

[CuteEvil]

A lot of people suffer from underactive thyroid but because in UK, reference range has been set 0.5 to 5 for TSH, so if someone has TSH within this range, GPs dont treat them .... they wouldnt listen to your symptoms at all.

http://www.thyroidhelp.org could be a nice place if you are looking for some supplements that can help restore thyroid level naturally.

[deb68]

Yes have this waas diagnosed very young 26 was shocked that would have to take the tabs for life when i didnt take them i was really depressed keep taing them it will help you
take care
x

[melbury]

Hi Melbury, long time no speak! Are you still off the ciggies :rotfl:

Your results seem to be in a good place. TSH fab! If you feel good then your FT4 and FT3 are right for you. Personally I need to be right at top of range for FT4 and maybe even a little over the top to feel OK. Just goes to show there is no hard and fast rule and everyone has their "sweet spot". Yours would appear to be mid-range at 17. As long as you feel OK then no need to do anything but continue on your present dose. It's good to hear that you stabilised, told you to be patient didn't I :D . Not having a go Melbury, just so good to hear that you got there in the end :T

Boobie bit - I haven't heard of thyroxine causing hard/tender boobs. IIRC you are menopausal. It's probably more likely to be caused by your female hormones doing funny things at this time. Obviously if you feel any lumps get them checked, otherwise a quick question to your GP about what might be causing this hardness/tenderness may put your mind at rest.


Hi TomsMum,

Nice to hear from you. Yes, I am still off the ciggies, ten months now, but must admit I do still miss them terribly. Probably if I had one now it would make me feel quite ill and it is a case of just imagining how nice it would be!

I am pleased with my last test results, wouldn't say that I feel absolutely great, but then I don't think I have felt that for years. Only complaint I really have is that it is just so difficult to shift any weight, whatever I do it just seems to be stuck there and will not budge. I am sure that part of the weight thing is that I gave up smoking at the same time as my thyroid decided to pack up, which was a double whammy. However, consultant told me that when my results got back into a good range, the weight should start to shift.

As far as the boobie thing is concerned, perhaps you are right and it just a case of menopause kicking in as well - hormones all over the place. I did get terrible hot flushes every time they increased my dose of thyroxine, so don't really know whether it was menopause or too much thyroxine. Have thought about trying natural progesterone cream - have you heard anything about that particular product? Supposed to be wonderful for menopausal symptoms.

[TomsMom]

Have thought about trying natural progesterone cream - have you heard anything about that particular product? Supposed to be wonderful for menopausal symptoms.

Hi Melbury

I have been using progesterone cream for quite a few years now. Dr Peatfield recommended it when I first went to see him when I became unwell again. However, I had very few menopausal symptoms so didn't use it because of that.

I still use it now (NatPro), mainly as an "insurance" against osteoporosis. Now whether it's making a difference there I can't say, nor do I really know which brand is best. I used to use Serenity but there was some controversy with two different companies claiming Serenity was their product originally - one in USA and one in Channel Islands - so because I didn't know one way or the other which the genuine Serenity was I gave it up.

I'm sure there are many people who find natural progesterone a big help with their menopausal symptoms, and I expect there are just as many who say it didn't help. The only thing I would say is you could give it a try and see if it helps you, give it maybe 3 or 4 months and if you feel no different then I wouldn't waste your money any further unless, like me, there is osteoporosis in the family and you want to do everything you can to try and prevent it.

By the way, you can do it with the ciggies, I gave up about 30 years ago and I think it would just about finish me off if I had one now. Resist girl, resist, take up knitting or something to keep your hands busy :rotfl:

[melbury]

TomsMum, thanks for the speedy reply.

That is so interesting that you have been using natural progersterone cream for quite a while, do you actually feel any benefits?

I have read all of the bumf on it; about it stopping oestrogen dominance which can lead to breast cancer, stopping menopause symptoms, preventing osteoporosis, in fact basically keeping you feeling wonderful.

I was seriously thinking about ordering some, when I saw a remark by some doctor in US saying that it could cause cancer.:eek: This was completely refuted by the followers of that Dr. John Lee (I think that is his name) who said that is complete rubbish, but it did put me off a bit. I don't really see how a cream made from supposedly natural ingredients could really cause problems though.

Would love to hear what your thoughts are on this product.

Thanks.

P.S. Very little chance of me taking up the ciggies again, otherwise all of that suffering would have been for nothing! Also, got through a real crisis over the past couple of weeks without smoking, so having proved that I can cope without, I very much doubt if I will start again - but never say never...............

[TomsMom]

That is so interesting that you have been using natural progersterone cream for quite a while, do you actually feel any benefits?

I have read all of the bumf on it; about it stopping oestrogen dominance which can lead to breast cancer, stopping menopause symptoms, preventing osteoporosis, in fact basically keeping you feeling wonderful.

I was seriously thinking about ordering some, when I saw a remark by some doctor in US saying that it could cause cancer.:eek: This was completely refuted by the followers of that Dr. John Lee (I think that is his name) who said that is complete rubbish, but it did put me off a bit. I don't really see how a cream made from supposedly natural ingredients could really cause problems though.

Would love to hear what your thoughts are on this product.



Hi Melbury

Do I feel any benefits? - No, can't say I do, but as I said I haven't been taking it to alleviate any menopausal symptoms as I didn't really have any so can't comment on whether it helps in that respect. I'm purely using it for it's reputed help regarding osteoporosis. Is it helping in that respect? I don't know and I can't get my GP to send me for a Dexascan. I have a feeling I heard something about there is a programme for ladies over a certain age to have these periodically (like smears and mammograms), must try to find out as I probably fit into that category now :rotfl:

Some people do say it makes them feel wonderful, I think it's like anything else, e.g. some people feel benefits of taking a certain vitamin but others don't. I'm of the opinion that if I think there may be "something in it" I'm willing to give it a trial as long as it doesn't break the bank and there's no positive proof that it's harmful.

Haven't heard or read about the cancer link. But that's said about a lot of things. On holiday in Australia there was a big news item about Tefal non-stick coating on cookware linked to cancer if you continued cooking with it once it was scratched or the coating was wearing off, and that the manufacturer would be phasing it out over the next so many years. Can't say that news filtered over to the UK or if it did I must have still been in Oz.

My thoughts are that if I was suffering menopausal symptoms that really bothered me then rather than go on HRT I would try all other alternatives, progesterone cream being one of them.

[dazzle21]

HI, I've just been diagnosed with an underactive thyroid, and at 28 my main concern is when i get the right dose of the drugs, will the excess weight shift? (I already eat healthily!) I have gained about 3stone in the past 2years (including baby weight!) and until now haven't been able to understand the dramatic weight gain and inability to shift it! TIA x

[lrr]

HI, I've just been diagnosed with an underactive thyroid, and at 28 my main concern is when i get the right dose of the drugs, will the excess weight shift? (I already eat healthily!) I have gained about 3stone in the past 2years (including baby weight!) and until now haven't been able to understand the dramatic weight gain and inability to shift it! TIA x

Hi there, I too have an underactive thyroid for a few years and hate to say it but im still at the same stage as you, even managed to put weight on, on the slimfast plan. Weight steadily going up and really effecting my health now. Got the doctor on Friday about it and will post any new info I can get on the weight gain issue.

[AussieLass]

I was diagnosed with an underactive thryroid early in the year. It took about 9 months to get the right dosage. I had to go back for blood tests every three months to determine this. I didn't put on a great deal of weight luckily (about 1/2 stone) but I must add I haven't lost what I gained either. I eat healthily too so know it was from the thryoid. My weight has stayed the same the last 9 months with no gains.

I thought once your thyroid was acting right there is no reason for weight gain? It's functioning just the same as it would normally. I hope you get it sorted.

[dazzle21]

Naively i had this belief that the drugs would mean the excess weight would go quite easily with a little extra exercise! doh!

[lrr]

Just been for my check-up today and thyroid was fine (forgot to get actual results), however I now have to deal with high blood pressure and high cholestrol! :eek:

I put it down to all the weight I have put on. Have to go back next week about that now.

Does it never end???????

:confused:

[AussieLass]

I thought that would be unusual Irr. When I first got blood tests as well as my thyroid being underactive my chol was through the roof. But once my thyroid was under control my chol went down. I didn't really change my diet either as I don't eat much high chol foods.

But high blood pressure & high chol isn't good. Maybe they will put you on medication for that for a while until you reach good results.

[dazzle21]

hello.. well it's 6 weeks since i started the thyroxine, and at first i felt so much better! But over the last 2/3 weeks i have started to gain weight (being very careful with diet and portions) my skin is awful - which it wasn't before, and i am still exhausted. I've found myself getting really forgetful,and having trouble holding a conversation, almost like i'm drunk!! I feel awful. Is this normal? I'm going to call and make an appointment for another blood test and Dr appointment but i wanted some reassurance that this is all potentially part of the thyroid issue and can be resolved!

[TomsMom]

Dazzle, you are about the same age as I was when I was diagnosed with an underactive thyroid and my problem started after the birth of my second child.

Your GP will have started you on a low dose of thyroxine, to be built up gradually until your blood results and your symptoms have stabilised. Blood tests are normally done about every 8 weeks or so to begin with. I expect he started you on about 50mcg thyroxine?????????? You wont see any great change yet, it takes time and patience - sometimes up to a year (sorry, you didn't want to hear that but in some cases it does take that long). They can't whop you with, say, a dose of 150mcg to start with, your body has to get used to the thyroxine so it's gradually built up.

Make that appointment for a re-test and get the results. As mentioned previously in this thread, keep a record - date of test-current dose of thyroxine-symptoms still noticeable-symptoms cleared up-etc. You can then use this information when you go back to discuss things with your GP.

If you haven't already done so I suggest you try to read all of this thread, there is a lot of useful information buried in it, also some reassurance!

[gingababe]

A quick question for tomsmom, if you can help me I would be very grateful, I was diagnosed with an under active thyroid after the birth of my first child, I am wondering in another pregnancy this time taking thyroxine would it be ok with the baby & secondly as I struggle with my weight would I not pile on the lbs & balloon???

Many thanks for your help
Ginga

[TomsMom]

I was diagnosed with an under active thyroid after the birth of my first child, I am wondering in another pregnancy this time taking thyroxine would it be ok with the baby & secondly as I struggle with my weight would I not pile on the lbs & balloon???



Hi Gingababe

It's absolutely fine. When you have an underactive thyroid your body is not making it's own natural thyroid hormones for whatever reason. By taking thyroxine all you are doing is giving your body a synthetic version of the hormone you are missing. Without it you would become very ill. With it your body functions normally again (when you are on the right dose).

It's not like taking the contraceptive pill, i.e. where you are introducing a hormone which alters the natural state of your body's own hormones to prevent pregnancy. Think of it more like having diabetes. If you had diabetes you take insulin to replace what your body is not producing naturally. It's the same with thyroxine.

If you become pregnant then obviously any concerns need to be discussed with your GP, who will probably be monitoring your thyroid on a regular basis anyway. Any changes in your blood test which may concern your doctor, i.e. taking you above or below the normal reference range, would result in him tweaking your meds to allow for this. By the way, in case you didn't know, all new born babies are tested for thyroid hormone levels as a matter of course.

With regards to your weight - people have different experiences. People without thyroid problems can struggle with their weight, it's just how some of us are made. If weight gain was a symptom of hypothyroidism originally then once stabilised on thyroxine then weight should stabilise too. Sometimes, if weight doesn't reduce after all other symptoms disappear it's worth doing a stock check of exactly how we eat. My weight did return to normal eventually but I know that I'm the sort of person who piles on the pounds if I eat all the naughty but nice things (chocs, sweets, biscuits, cakes, puddings) - I just can't get away with it so I just don't have them and my weight is fairly stable. A healthy diet is the way to go, but make sure it really is healthy and if you like burgers, chips and chocs then save them for just an occasional treat.

So basically, if you are stable on thyroxine then there's no problem during pregnancy, expect a normal "baby weight gain" and expect it to disappear within the normal amount of time.

If you haven't already got it then a good little book to help you understand more about hypothyroidism is "Thyroid Disorders" in the Family Doctor series available from pharmacies, costs £4 - £5ish and well worth it. And don't forget to ask your GP for your test results and keep a note of them as I mentioned in the post above yours.

Hope that helps.

[dazzle21]

Thanks TomsMum, and gingababe i was wondering the same thing so i'm glad you asked! (1st baby is 6months)Will stay positive, and yes i am only on 50mcg which she did say would probably not do much but i guess it's better they increase it slowly! Right, at 2pm i shall make appointment and dig out a note book to start record of whats been going on. Thanks so much for the advice, it's hard to explain to someone who doesn't have the problem as they just think you're being daft or lazy! xx

[gingababe]

Tomsmom, thanks for that, very reassuring, will have to pop to the pharmacy for that book. I can look at a cream cake & see the scales go up but I have always been the same so I know that I have to be sensible & watch what I am doing. Just one more question, I need to take iron tablets, due to my iron levels being low, does it matter when I take the iron tablet in relation to my thyroxine tablet? Sorry if this is a silly question.

Thanks again
Gingababe

[TomsMom]

Just one more question, I need to take iron tablets, due to my iron levels being low, does it matter when I take the iron tablet in relation to my thyroxine tablet? Sorry if this is a silly question.

Thanks again
Gingababe

I always take any supplements an hour or so away from thyroxine, just to be on the safe side. In fact, I put my thyroxine ready on my bedside table with a glass of water when I go to bed. When I first wake up I take my thyroxine then nod off again so it's always an hour or two before I take anything else. Also, it gives an hour before food.

If you don't already know of ThyroidUK (http://www.thyroiduk.org/) (a charity) it's an interesting and informative site. If you go to "Treatment" and from the drop down menu click on "Problem drugs and food" you will learn quite a lot. The whole site is very good so when you've got time have a look-see.

[DrFluffy]

Tomsmom, thanks for that, very reassuring, will have to pop to the pharmacy for that book. I can look at a cream cake & see the scales go up but I have always been the same so I know that I have to be sensible & watch what I am doing. Just one more question, I need to take iron tablets, due to my iron levels being low, does it matter when I take the iron tablet in relation to my thyroxine tablet? Sorry if this is a silly question.

Thanks again
Gingababe

Iron affects the uptake of thyroxine from the gut, so you should leave at least an hour between. Take your iron with orange juice (as this increases the uptake of iron).

I *think* you should take thyroxine on an empty stomach anyway, so I would take that first, wait and hour or two, then take your iron.

I'm 99.9999999999999999999999% sure the above is true! That said, if you pop in to your local pharmacy, the pharmacist will be able to advise you.

[DrFluffy]

Edit = nope, c'est vrai! Huzzah! My revision MUST be going well (*prays to the great god of finals*)

http://www.familydoctor.co.nz/index.asp?U=conditions&A=6159
hyroxine tablets should be taken on awakening at least 30 minutes before eating. Some bran or fibre foods may reduce absorption. Iron tablets and antacids should not be taken at the same time as they will also reduce absorption.

Also, see Patient.co.uk (a REALLY good patient info website)
www.patient.co.uk/showdoc/23068762/
The treatment is to take levothyroxine (thyroxine) tablets each day. This replaces the thyroxine which your thyroid gland is not making. Most people feel much better soon after starting treatment. Ideally, take the tablet on an empty stomach (before breakfast). This is because some foods rich in calcium or iron may interfere with the absorption of levothyroxine from the gut. (For the same reason, don't take levothyroxine tablets at the same time of day as calcium or iron tablets.)

[melbury]

Hello again TomsMum and Happy New Year to you.

I am still on 125mcg of Eltroxin per day, but can't seem to shift the excess weight - why is this? I thought once you were stabilized the weight started to go. Feeling really despondent about this, I have really cut down my food intake, but not losing any weight.

Also, my hot flushes have returned with a vengence. The sage capsules seemed to eliminate them early last year so I stopped taking them and eventually they came back. Tried taking the sage again, but did not work a second time.

Do you think it is time to try the natural progesterone cream?

[TomsMom]

I'm not sure if we're allowed to carry on this discussion now after seeing the warning at the top of the page about discussing medical conditions, if the thread gets closed/post gets deleted you can PM me.


I am still on 125mcg of Eltroxin per day, but can't seem to shift the excess weight - why is this? I thought once you were stabilized the weight started to go. Feeling really despondent about this, I have really cut down my food intake, but not losing any weight.

Have you been keeping a record of your test results? Do you feel as though you have reached a point where you have no other symptoms? Most people, once stabilised on meds should return to their normal weight. People are different, some lose weight easily, some struggle. Do you exercise? If everything is stable, and you are happy with where you are meds-wise, I would discuss the weight issue with your GP. If all else fails you could get Paul McKenna's I Can Make You Thin :rotfl: . I've just got his I Can Make You Sleep, early days but I am quite impressed so far. £5.49 at Amazon, free delivery!

Also, my hot flushes have returned with a vengence. The sage capsules seemed to eliminate them early last year so I stopped taking them and eventually they came back. Tried taking the sage again, but did not work a second time.

Do you think it is time to try the natural progesterone cream?

Ooooh, I wouldn't have stopped taking the sage! By all means try the natural progesterone cream. It wont do any harm and may well help, but give it a good trial. If you find it helps I would continue with it.

[melbury]

Thanks TomsMom,

I was all set to order some natural progesterone cream and then read an article that implied using it coudl cause breast cancer, which put me off somewhat.

What is the best make to try?

I haven't had my thyroid levels checked since last August, must admit didn't both to go for my November check.

[TomsMom]

Thanks TomsMom,

I was all set to order some natural progesterone cream and then read an article that implied using it coudl cause breast cancer, which put me off somewhat.

What is the best make to try?

I haven't had my thyroid levels checked since last August, must admit didn't both to go for my November check.

Please go and get your blood tests done again then you can compare with your previous results. You may still need an increase in your meds. It really is important if you want to reach a place where you are back to normal health and happy. Only you can tell you GP how you are feeling, not the test results.

I use NatPro. It doesn't contain parabens or PEG. Don't know if it's the best. ProGest is another one but it does contain PEG. I used to use Serenity but there was some confusion as there were two Serenity makes, each slagging the other off, and I didn't know which was the genuine one so I stopped buying it. DO NOT BUY ANY THAT SAYS IT IS FROM WILD YAM, it needs to say USP (United States pharmaceutical grade) or natural progesterone.

[melbury]

Please go and get your blood tests done again then you can compare with your previous results. You may still need an increase in your meds. It really is important if you want to reach a place where you are back to normal health and happy. Only you can tell you GP how you are feeling, not the test results.

I use NatPro. It doesn't contain parabens or PEG. Don't know if it's the best. ProGest is another one but it does contain PEG. I used to use Serenity but there was some confusion as there were two Serenity makes, each slagging the other off, and I didn't know which was the genuine one so I stopped buying it. DO NOT BUY ANY THAT SAYS IT IS FROM WILD YAM, it needs to say USP (United States pharmaceutical grade) or natural progesterone.

Thanks for the information, what are parabens and PEG? Also, why is wild yam bad? That sounds a very natural product.

I did go for my blood test a couple of weeks ago but haven't been back for the results yet - GP off on a jolly! Perhaps I need putting up to 150mcg to get some weight off?