On commonness and rarity of thyroid hormone res... - Thyroid UK

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On commonness and rarity of thyroid hormone resistance: a discussion based on mechanisms of reduced sensitivity in peripheral tissues

DippyDame profile image
10 Replies

pubmed.ncbi.nlm.nih.gov/173...

This may be of interest to some members

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DippyDame profile image
DippyDame
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so does this mean that you could have ‘optimal’ results from blood tests but still experience symptoms such as ongoing leg muscle weakness and pain? That tissue samples from the thighs could show a lack of T3? Or am I completely misunderstanding?? Thx!! 😊

Litatamon profile image
Litatamon in reply to Josephineinamachine

A bit off topic but Interesting post for me Josephine. I have had unexplained leg weakness for years, with zero atrophy. In fact no problem building muscle, it just does not work properly. And my numbers are still off (TSH was still high last time out 32 with NDT - 31/2 grains & 17 with T4 -112/T3 -25), but even the time where I got it in range the issue was still there & I could not function with the medication anyway (225 mcg Synthroid - could not stay awake/intense brain fog). I have had to make a lot of hormone changes due to border issues. And change in endocrinologist.

However, when t3 was added recently, I did feel a jolt in my legs. And then it went again. But I absolutely felt something. It did make me wonder if some part of me went HELLO! to the straightforward t3 for my legs but needed more and gave up again.

Josephineinamachine profile image
Josephineinamachine in reply to Litatamon

how do you mean not work properly? Do you have pain or trouble with balance? I have weak muscles which refuse to build despite walking - a lot! - some jogging and body weight strength training. I know the ‘old me’ with this level of exercise would have nut cracking thighs! So I have permanent pain/ache in the front and back of my thighs. I feel as if only my bones are carrying me and they hurt. Sometimes I feel I’m having to concentrate when I’m walking to walk in a straight line. I never walk anywhere without being aware of my walking. Not sure if this makes sense. I’m very baffled.

BiscuitBaby profile image
BiscuitBaby in reply to Josephineinamachine

Hi JosephineinamachineYou have just described me. I have the exact same issues. I can't build muscle at all. Or lose weight or tone anything! I also feel as if my back muscles aren't strong enough to hold me up. It is like you describe, it's your bones that are doing the work. Things have improved since I added t3 but it's not gone away. I am starting to think I'll never be able to live symptom free. I have to actively work on not letting it get me down but that's hard work too!!! It definitely helps to know others feel the same and it's not all in my head like my Dr told me!!!

tattybogle profile image
tattybogle

link to a bit more of it here , which at least lets us see their references .. but most of it is still behind a paywall . sciencedirect.com/science/a...

DippyDame profile image
DippyDame

The recent literature reviewed here inclines us to hypothesise that acquired RTH may be the commoner of the two

That comes as no surprise!

Noelnoel profile image
Noelnoel in reply to DippyDame

It’s definitely of interest. Thanks for posting it. Is there a definitive test? 

If acquired RTH exists, then it may not be picked up by blood assays of TH and TSH. An appropriate test to assess TH action in peripheral tissues is therefore greatly desired.

DippyDame profile image
DippyDame in reply to Noelnoel

If the cause is genetic then here is a test to check for genetic variants in the hormone beta receptor....but I doubt that is readily available.

Acquired RTH can have various origins and there is no specific test

Generally high thyroid levels with non suppressed TSH is a clue.....but it's very complicated to diagnose, and unusual, especially the genetic variant

Noelnoel profile image
Noelnoel in reply to DippyDame

Thank you DD

So, unlikely I have it given thyroid levels only moderate and TSH below range?

Even so, what’s the test for genetic variants please?

DippyDame profile image
DippyDame in reply to Noelnoel

Highly unlikely.

I only know tests exist but never felt the need to go there

I doubt the NHS would consider the test ....it is long and expensive

As an example this US site gives some detail....

preventiongenetics.com/test...

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