Weaning off T3

[lynmynott]

Has anyone heard of a faculty at the Imperial College where patients are sent to be weaned off T3? We are interested to hear about this.

Lyn Mynott

CEO

Thyroid UK

[StitchFairy]

Weaning off T3? Gosh, that makes it sound like it's an addictive drug instead of an essential hormone!

[lynmynott Partner Thyroid UK in reply to StitchFairy]

Yes, I agree. Sounds monstrous if it is actually happening! I was asked about this but I haven't heard anything.

[Hidden]

How can you be weaned off something if you need it???

[helvella Administrator Thyroid UK]

I would have thought any proposed T3 weaning program would count as a trial? After all, there is precious little published information about doing this.

Therefore, it should be formally registered as such.

Have checked both UK and WHO trial registers and found nothing. (That could very well be due to my inexperience of searching for trials.)

Also, "weaning" involves substituting one thing (milk) by another (solid food). What is being discussed here? Straight replacement of T3 by levothyroxine (T4)? Or something else?

[lynmynott Partner Thyroid UK in reply to helvella]

I would imagine it means reducing the T3 and increasing the levo until you are no longer on T3.

[MichelleHarris]

If you google it, theres a page Imperial are recruiting for x

[helvella Administrator Thyroid UK in reply to MichelleHarris]

Are you able to post a link, please?

[MichelleHarris in reply to helvella]

imperial.crf.nihr.ac.uk/pat...

This link does not include any trial relating to the Thyroid at all.

I asked my step son whos there. I’ve just sent him another message x

[helvella Administrator Thyroid UK in reply to MichelleHarris]

Thank you - that is where I had looked. I misinterpreted you as saying there was a specific page for the thyroid (T3/liothyonine weaning) issue.

[lynmynott Partner Thyroid UK in reply to MichelleHarris]

Yes, please, let us have the link.

[MichelleHarris in reply to lynmynott]

My son at Imperial has logged in and cannot find anything at all but says theyre not always transparent unless they are looking for volunteers and dont tend to advertise research until its published. He suggests to email the relevant dept. and ask directly x

[helvella Administrator Thyroid UK in reply to MichelleHarris]

I was under the impression that the directive below effectively required registration of clinical trials? (Possibly arguable for observational-only studies but T3 weaning would surely be interventional?)

DIRECTIVE 2001/20/EC OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL

No, I have not spent the day reading it in detail.

[shaws Administrator]

If people are 'weaned off T3' what has replaced this Active Thyroid Hormone.

I still remember how awful I was on levo alone and some of us (as you know) cannot recover on it.

Did they replace T3 with NDT (I doubt).

I spent more time in the cardiology department when on T4 and Cardiologist was thinking of putting an 'implant in heart to see what was going on'. Just at that time T3 was added to T4 and all palpitations ceased. Since on T3 I've recovered my health.

It doesn't make sense - obviously they are determined to give women the cheaper product even if they remain unwell with clinical symptoms. It's not them who're suffering - it is mainly females who also have to contend with monthly cycles.

Let them source a cheaper T3 or prescribe NDT (which doesn't suit me and for which False Statements were made by them so they stopped prescribing) but still helps many patients.

How many very unwell people become so bad they can only think that life is not worth living. As we've heard on this forum.

[fuchsia-pink]

It seems there is paucity of decent large-scale thyroid testing - so despite the off-putting name, what is being suggested may be useful.

It seems there is a spectrum of thyroid sufferers, with some (many?) happy just on T4; some that must have T3/NDT, either on its own or with T4, and a possible middle cohort, of people who are just outside range, or a bit unwell but not hideously ill, just on levo, but who might be fine with better monitoring / dose control, or better supplements or whatever.

And - given the huge costs of T3 and difficulty in getting NDT - if some research can point to indicators which enable docs to identify and treat better/quicker the T3-must-haves and the "middle group" - surely that is helpful?

[helvella Administrator Thyroid UK in reply to fuchsia-pink]

I think many here would argue that the cost of T3 should never be an issue. We know that some new medicine that cost billions to develop needs to recoup its costs. But there is no such cost justification for T3. Its high cost is due to the companies demanding, and the NHS price setters acceding, in setting a high price.

It also concerns me that some rationale will be found for deciding who should get T3, and who not. If that is in any way flawed, it makes life even more difficult for those refused under that rationale. Imagine a specific gene/SNP is identified - RS123456. And, initially people with a particular variant are assessed as needing T3. But, in time, it is shown not to be RS123456, but RS789012, and possibly only in some circumstances. No-one with RS798012 will be granted T3 (unless they also have RS123456).

People who need T3 on clinical grounds - that they do better when taking it - should get it regardless the known science. That science should develop and, eventually, produce an explanation. Even then, there will still be unknowns and clinical need should be the ultimate arbiter.

[fuchsia-pink in reply to helvella]

I don't disagree that the cost of T3 (in the UK) is an absolute outrage. But in the absence of someone negotiating a better price, what is needed is far better thyroid treatment for those that don't respond well to the current system which seems to be far too greatly numbers-driven - if you're in range you're ok (and if not we'll find you a TSH-obsessed diabetes specialist).

Perhaps I was being overly-idealistic in hoping that a medical trial might improve things

[SlowDragon Administrator in reply to fuchsia-pink]

I would absolutely agree

We see many many people on here who are simply under treated, left on 50mcg or 75mcg Levothyroxine. GP's refusing to test more than TSH.....

Low vitamins due to under medication lead to low TSH .... and GP refuses to increase Levothyroxine

These patients are then in effect forced to go down the road of self medicating.....that frequently means adding T3 ....when actually they might be ok on a decent dose of Levothyroxine

And/or regular testing and improving low vitamin levels by significant supplements

[penny]

Wouldn’t this be unethical? Taking away a vital medication so that the patient becomes very unwell, even, perhaps on the point of death. I do hope not.

[shaws Administrator in reply to penny]

It would seem that they have no conscience at all.

It is all down to the cost of T3 which was a 'perfect excuse' as more patients were asking for it to be added to T4, or prescribed with T3 only. T3 could be sourced more cheaply elsewhere.

The fact that they also made False Statements about NDT (the original replacement from 1892 up to present-da) to get it withdrawn and they never did give a response to Dr Lowe, despite his three yearly requests for an answe. Dr L died due to an accident.

drlowe.com/thyroidscience/C...

So from options being = NDT, T4/T3, T3 alone, we are restricted to levothyroxine alone and I, for one, become extremely unwell upon it.