Does anyone here have an underactive thyroid?

TomsMom

melbury wrote: »

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

pattycake wrote: »

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.

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_3

pattycake wrote: »

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.

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

pattycake wrote: »

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 https://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.