Prof Simon Pearce again

[Hoxo]

So I see the BFT are holding a webinar for medical professionals on managing thyroid in primary care by Professor Simon Pearce. What hope is there following his recent tweet that a recent paper shows that thyroid hormones T4 and T3 have a huge placebo effect.

twitter.com/britishthyroid/...

[diogenes Remembering]

There always are some "placebo effects" with some patients. The problem that should be answered if a blinded trial was done is this 1) how can it be ethical to subject patients to a placebo rather than hormone treatment, 2) if this was done, how long would it be before the indication of a lack of real treatment became apparent regarding patient health (ie how long did the placebo effect continue to mask the real situation), 3) how does he know that giving T3 and T4 truly gives a placebo effect when we know that this is inextricably mixed up with real effects, 4) how does he know that the extra actions of T3 are placebo effects over, say, T4 rather than real ones? I simply don't know how an ethical trial could be carried out and give meaningful results. It seems arbitrary to me to decide "this is a Placebo effect" rather than a "Real effect". 5) Such studies if done on subjects who are euthyroid doesn't at all extrapolate to patients.

[Hoxo in reply to diogenes]

I can see that there must be some placebo effect. In fact placebo can have incredible effects on people and is a fascinating subject. I could see that after being unwell for a long time and listened to and told you will get hormones prescribed, that even if these were placebo initially you would feel relief - even a brief lifting of the psychological torment from being unwell and not diagnosed to being given a diagnosis and promise of treatment would make you feel better. But this would not last for very long. The physiological affect of hormone deprivation would take its toll. I do think his reporting of what he said is so irresponsible and arrogant!

In fact I’ve been thinking over the subject of trials for combination therapy and these are some of my thoughts about it. Thyroid health is such a complex situation with so many variables at play. I have had both hyper and hypo situations after a long history of thyroid disease and I still find it hard to tell if I’m hyper or hypo after 25 years. Yet I know that subtle difference between feeling wretched and then feeling ‘OK’.

This must be very hard to measure in trials. Changes are often slow and unnoticed until one day you realise you are doing something that you couldn’t have done weeks ago or that your mental clarity is clearer your bowels healthier etc. These markers could easily be missed especially with the timescales involved.

Then there is the issue of the overlap of some of the symptoms and effects on the hypo hyper ends of the spectrum. I’m thinking fatigue mood, pain headaches, heart symptoms etc which would complicate matters.

Then throw into the mix that all thyroid patients are lumped into 1 group with no differentiation of diodinase status and reliance of TSH reference ranges as a measure without measurement of free T3 or looking at T3/T4 ratios and I’m not surprised that many studies have failed to show significant benefits.

Why can’t these experts see these things? And these experts are influencing treatment protocols. So worrying.

[knitwitty in reply to diogenes]

You are so right, I wonder if they would be allowed to test whether insulin or a Placebo would make diabetics feel ok !!

[diogenes Remembering]

The only way I could see this would be to assume that Pearce pre-sets his base condition as having normal TSH on treatment + within range FT4 and (if he measured it) FT3. Therefore by his thinking, such patients are really truly well treated. Therefore if anyone complains, these patients must have somatic false feelings (a la Weetman). This could be tested by giving either placebo or, say, T3 in a blinded trial. Some people will respond to the placebo at least in the short term, alongside those who have a real improvement. Making a presumption that certain TSH,FT4 and FT3 levels PROVE correct treatment, thus any further benefit is by placebo is just what it is; a presumption.

[Hidden]

Interesting to see that Simon Pearce isn't well respected within the thyroid community, there have also been issues with him in the Adrenal Insufficiency/Addison's community as well.

[Ilander in reply to Hidden]

TSH is useful for diagnosis only when at extreme levels to identify overt primary hypothyroidism. During treatment TSH is totally useless for diagnosis of thyroid status and medication dosage. If you want evidence, go to the home page and read "Managing the Thyroid Process". Everyone an be different in the levels of FT4 and fT3 at which they feel normal (inter-individuality), so treatment must be based on an evaluation for symptoms typical of hypothyroidism, supported with tests for FT4 and FT3. It is also important that Vitamin D is at least 50 ng/ml, B12 in the upper part of its range and ferritin at least 100.

[Hidden in reply to Ilander]

Oh I wasn't questioning anything about thyroid tests, it was more that Simon Pearce hasn't been great with caring for people with adrenal insufficiency risking causing some of them to be very ill because of his cavalier methods in testing.

[knitwitty in reply to Hidden]

It beggars belief that he holds such an influential position then.

[Hidden in reply to knitwitty]

yep!

[helvella Administrator Thyroid UK in reply to knitwitty]

Sometimes those are the very people who go for those positions.

Some of the best people feel they do not wish to get involved in such roles.

[knitwitty in reply to helvella]

How true, I have found in my working life that those best qualified for positions are often reluctant to put themselves forward , and often underestimate their capabilities, whereas those least qualified are often very good at self promotion to the detriment of all around them.

[TaraJR]

For the record, maybe for newer members, Professor Pearce is currently president of the British Thyroid Association, and also editor in chief of the European Thyroid Journal.

[knitwitty in reply to TaraJR]

Perhaps he should volunteer to have his thyroid removed so he can experience the full effect of being undermedicated on levothyroxine alone then. I am only saying that in jest lest anyone should think I'm being serious !

[helvella Administrator Thyroid UK in reply to knitwitty]

Just a few weeks of carbimazole, propylthiouracil, thiourea, methimazole or whatever should do the trick nicely.

No need to use the resources to perform an operation.

[knitwitty in reply to helvella]

I knew you'd have a more appropriate answer at your fingertips!! thank you. 😂

[Hidden]

I think you've hit the nail on it's head! Sadly he is on the medical committee for the UK Addison's Disease Society.

[AS14]

Professor Pearce is my doctor for another endocrine condition and was for sometime also managing my thyroid treatment. Very good doctor as far as “ the other” condition is concerned pretty much keeps me well but Im afraid I cant say the same as far as my thyroid treatment goes. Im afraid hes no different to any other doctor Ive seen as for my thyroid and none of them have been good. I can only speak from personal experience but I wont let him treat my thyroid any more

[Hoxo in reply to AS14]

He has mostly 5 star reviews on that rate your doctor website. Interesting that you won’t let him treat thyroid. Does he over rely on TSH.

[AS14]

Ive not seen the reviews but are they specific to thyroid treatment, he treats a number conditions.We’re all very different when it comes to thyroid health some have their thyroid some dont like me, some simply need a change in levo dose or a vitamin deficiency correcting that could be affecting thyroid function. Theyre relatively straight forward steps to getting well and thats great so I understand good reviews but what if its not quite so straight forward did those people leave reviews. Hes been a really good doctor for my other problem, keeps me well as far as that goes way better than any other doctor so I cant fault him on that. So I agree Id give him 5 stars for that. As for my thyroid though its very different, years ago I asked on several occasions what the different results were, FT4, FT3 and TSH, what did it all mean and was my FT3 very low something to be concerned about. I was told not to worry about those and as long as my TSH was around 2 everything was fine, they dont like it to get much lower than that. I was clueless had no reason to question him but I know far more now so have spoken to him several times since about my low FT3 but get nowhere. The reply is always the same its not an issue its in range and he doesnt like my low TSH so maybe my levothyroxine needs adjusting. I said no Im sick enough I’ll get even sicker, Im already a mess . Nothing I said made a difference and when he started talking about reducing my levo I felt it best to call it a day, it was obvious he wasnt going to listen.

Its a shame because hes such a good doctor for the other condition, and I wish I could say the same for thyroid but cant and just tell you about my experience .

[Hoxo in reply to AS14]

Wow. My jaw actually dropped reading this. He doesn’t know how to treat thyroid disease and yet he’s top man on thyroid groups and journals!!! Unbelievable. Well done you for breaking free and going it alone. That’s what I had to do when I couldn’t talk sense into my GP.

[AS14 in reply to Hoxo]

Yep exactly what he said and I feel pretty stupid now for believing it for years. Last time we talked about it I asked for T3 or ndt, that got shot down pretty sharpish, looked pretty shocked dont think he expected me to know anything about it. Apparently an FT3 barely making it into the bottom of the range, and despite having no thyroid levo does good enough job at giving what I need. Honestly I got lost for words in the end, fighting a losing battle. I tried a private endo seemed good at first but ultimately that didnt end well when he tried to tell me I had fibromyalgia and maybe its time to consider antidepressants. I have no idea how I kept my composure, I thought Im paying you hundreds of pounds every time I see him for that rubbish and its down right insulting too. Ive given up on doctors so like so many people Im having to try and sort this out for myself. Ive tried liothyronine couldnt tolerate it so Im hoping to find some ndt, not so easy though. One things for sure though I’ll never trust a doctor with my thyroid ever again, I think most of us are far knowledgable than them anyway.

[Hoxo in reply to AS14]

Well said. Exactly this!!!

[AS14]

My thoughts exactly, anything related to parathyroid as in my case hes a great doctor, one of the best around.

[serenfach]

If you get really ill and end up in hospital due to your thyroid, they give you a T3 drip. Obviously this is just to get the placebo effect.

[AS14 in reply to serenfach]

Its too stupid for words and scary as these doctors are supposed to be the experts.

[Stourie]

He (they) obviously want to get rid of us all 😒🙃Jo xx