Could my low TSH be the problem: I have been... - Thyroid UK

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Could my low TSH be the problem

wendypartridge profile image
20 Replies

I have been taking 5mgs of carb for 5 weeks today i got my blood tests back my tsh has not moved at all and is still at 0.2.0 but mt t4 has gone from 12 to 11.8 my t3 has stayed the same 3.8 , I feel hyper can not sleep and have sysptomts of hyper ( i have GD also ) Can some one explain why my tsh level is not going up ,it was dropping for around 2 months slowly but surly and my t4 was raiseing I feel hyper but of course my doctor says ' its normal ' range for tsh (4-04_) range for T4 (11-21 ) T3 ( 3-6)

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wendypartridge profile image
wendypartridge
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humanbean profile image
humanbean

I've just gone back and read quite a lot of the posts you've made over the last couple of years. In all the posts I read I have never seen any evidence that you have Graves' Disease at all.

Each time you post you have quite low in range TSH, what looks like fairly low Free T4 and Free T3. But you never mention Graves antibodies. And you've never mentioned having high Free T4 or high Free T3.

So what evidence has your doctor got (or given you) that you ever had Graves' Disease? Has he based it purely on your low TSH?

Everything you have written has suggested that you might actually have secondary hypothyroidism and/or possibly cortisol problems, and you probably have low vitamins and minerals as well.

Have you ever had your thyroid antibodies measured? There are several different kinds :

labtestsonline.org.uk/under...

wendypartridge profile image
wendypartridge in reply to humanbean

yes I was tested for GD 2 years ago came back positive

humanbean profile image
humanbean in reply to wendypartridge

But what was actually tested? Your TSH? Or antibodies? How was the GD diagnosed?

wendypartridge profile image
wendypartridge in reply to humanbean

yes, i have been tested , they did a gd test when I fisrt became unwell 2 years ago , they tested anti bodies that came back positive for GD

wendypartridge profile image
wendypartridge in reply to wendypartridge

also i have been told i show no signs of Cushing's Syndrome

greygoose profile image
greygoose

Quite agree with HB. A lot of doctors think that a low TSH on its own constitutes 'hyper' - and from there conclude that it must be Grave's, without ever testing the antibodies - we see that quite a lot on here.

You are only hyper if your FT3 is a lot over range. Yours, apparently, never has been. So, you should not have been treated for hyper.

As HB says, you are now very hypo, and it is hypos symptoms you are experiencing, not hyper - and they have probably always been hypo symptoms, not hyper.

Your labs, as written above, present secondary hypo. But, it's rare to find a doctor that has ever heard of secondary hypo, let alone knows what it is. I think, what you need now, is some levo - or some other form of thyroid hormone replacement. :)

wendypartridge profile image
wendypartridge in reply to greygoose

I have been tested for GD anitbodies which came back positive

greygoose profile image
greygoose in reply to wendypartridge

OK. So, your FT3 was over-range? Do you have a copy of your labs from the time you were diagnosed?

In any case, you are far from hyper, now. You are hypo. Ignore your TSH, it will probably never rise now that you've had Grave's? What is important is your FT4 and FT3. So, work with them. And they need to come up a bit. Quite a bit! :)

wendypartridge profile image
wendypartridge in reply to greygoose

a low tsh make me ill so ???#

greygoose profile image
greygoose in reply to wendypartridge

The TSH does not make you anything. In no way does the TSH affect how you feel of or by itself.

It is your low T3 that is making you feel ill. It needs to increase.

humanbean profile image
humanbean in reply to wendypartridge

A low TSH won't make you feel ill, nor does it prove by itself that you have Graves' Disease. (TSH is produced by the pituitary by the way, it isn't a thyroid hormone.)

It is high antibodies (of a certain type) and low in range or under the range or over the range thyroid hormones that makes people feel ill. You definitely have low in range thyroid hormones now, but you've never mentioned having high thyroid hormone levels in the past. We still don't know what your antibody levels were.

If you were to write to your GP surgery and ask for a copy of all electronically held information in your records, it will cost you £10. I really think it would be well worth the £10.

If you want a copy of absolutely everything, including stuff which is still on paper, it will cost you £50.

I'm not saying you definitely don't have GD. I'm just saying that nothing you have written proves the diagnosis. A low TSH doesn't prove you have GD, there is more to the diagnosis than that.

wendypartridge profile image
wendypartridge in reply to humanbean

A low tsh does make you ill . we are not all the same , your not any kind of doctor I dont want you to reply again .so kindly stay off my post I have not said a low tsh makes anyone hyper . please stay of my post

wendypartridge profile image
wendypartridge

I am sorry but you dont seem to know what you are talking about . I have GD yet your questionong it , I have had 18 months treatment of carb was taken of it in Novemember 2015 and i am now back on it 5mg aday because my t4 and t3 were raising my tsh remains surrpressed . Your not medically trained I was looking for advice not questions about 'how I know I have GD' I am shocked that you both chose to reply to me in such a manner . normaly i get great advice or surport

greygoose profile image
greygoose in reply to wendypartridge

I'm sorry we don't meet your criteria for advice or support. But in order to advise or support someone, one has to know the facts. The details. Otherwise, it's just guess work - which could be wrong.

No, we're not doctors, but we know more than most doctors. Your FT3 needed to rise, because it was too low. If you take more carb, it is going to go even lower and you will become even more ill.

I think if you ask other people suffering from Graves, they will tell you that once the TSH gets that low, it will not rise again, because your set point has changed. But that is irrelevant. All the TSH does is stimulate the thyroid gland. It does not have any effect on anything else except the thyroid gland.

But, if you just want someone to say aww hun, I'm so sorry you don't feel well... Well, it won't be me. That's not my style. Sorry, I won't bother you again. x

humanbean profile image
humanbean

If you had secondary hypothyroidism the treatment you would need is totally different to the treatment for GD.

If you have been mis-diagnosed you will never be well if you are being treated for the wrong condition.

I want to stress that I'm not getting at you. If I'm getting at anyone I'm getting at your doctor. His diagnosis is in doubt, as far as I can see. I'm just trying to ascertain whether you have been diagnosed correctly. If you have then I'll shut up. But if you haven't then surely you would want to know?

HIFL profile image
HIFL

If you have Graves' disease, you would have positive antibody tests for TSI or TRab or TSH Receptor antibodies or TBII. This confirms Graves'. The reason a low TSH doesn't confirm Graves' is because you can have a very low TSH without Graves'. If you had a head injury, it could damage your hypothalamus or pituitary gland, and then you wouldn't produce TSH. This is called secondary or tertiary hypothyroidism. There are also other illnesses which result in a low TSH--it doesn't always mean Graves'. The group here is just trying to make sure you have Graves' (specific antibodies) and not pituitary damage.

Now assuming you do have Graves', why is your TSH so low? It's because that's what Graves' antibodies do. They suppress TSH. It doesn't matter if your T3 and T4 are below the reference range. You could even have a thyroidectomy or RAI (in other words, NO thyroid gland function), and still have a low TSH. It's the antibodies that keep your TSH suppressed. So with Graves', TSH is about the worst lab value you can use to determine whether thyroid levels are at healthy levels for an individual.

To answer your question, I think you feel hyper right now because you're hypo and your T3 and T4 are too low. It doesn't matter what your TSH is if you have Graves'. It's common to have insomnia and feel hyper when your T3 and T4 are too low. There's an explanation here: tiredthyroid.com/feeling-hy...

One protocol some Graves' patients use is modified block and replace. They stay on the carb but take levothyroxine to bring up their thyroid levels so they don't feel so awful. The reason to stay on the carb is because it tends to decrease the antibodies over time. tiredthyroid.com/graves.html

wendypartridge profile image
wendypartridge in reply to HIFL

thank you so much for your post . I had an antibody test 2 years ago and it came back positive , I had 18 months of carb saw the endro then last november they stoped carb and it was 'lets wait and see' I did and slowly my tsh droped and my t4 and t3 was raising 6 weeks ago i started taking 5mg of carb still feel rubbish , but i will look at all your links and hopfuly i will find out and understand if i am hyper or hypo , thank you again xx

HIFL profile image
HIFL in reply to wendypartridge

You're welcome. I would, just as a precaution, ask your doctor if you can see your antibody results from 2 years ago. I mentioned the Graves' antibodies above. Those are what you're looking for to confirm Graves'. TPO and thyroglobulin antibodies or TGab are typically positive in Hashimoto's patients. Sadly, patients without Graves' have been placed on carb simply because of a low TSH. But what you describe fits with Graves'. Good luck!

Marz profile image
Marz

Only a suggestion ☺ Why not complete your Profile with information so that people do not have to ask for details.

Both greygoose and humanbean have provided excellent profiles as an example. Have done mine too. Click onto peoples names at the beginning of their post and have a read

Then when you find which anti-bodies you have results for you can Edit your Profile accordingly to keep it updated. It will save you a great deal of time and energy ☺

wendypartridge profile image
wendypartridge

Its only just today I haveseen the profile part , yes you are right thanks x

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