Does anyone here have an underactive thyroid?

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_2

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

deedee6 wrote: »

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 https://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

gingababe wrote: »

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

melbury wrote: »

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.