Thyroid UK
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This is the voice of influential present day UK thinking in thyroidology. Read and despair.

This is the verbatim reason for rejecting a paper of ours to BMJ from a socalled thyroid expert in the UK. Let me say that I am not "an enthusiast for combined T4/T3 therapy" or anything else. I simply follow where the facts lead me. But I thought you ought to see a response from a reviewer (Dr S Pearce) regarding a submission of our where we argue for a rethink in thyroid diagnosis and treatment primarily substituting the range "shoehorn" diagnostic process for individual appraisal. I believe he is a member of the NICE committee presently re-examining the guidelines. Here it is in full (I highlight some of the more beautiful statements) with my name spelled wrongly to start with:

Midgely and colleagues provide a series of arguments that current reliance on serum TSH measurements in the diagnosis and monitoring of thyroid disease leads to suboptimal treatment. The article is unstructured and many original contributions are un-cited. In addition, on several occasions the US guidelines are cited to back up a sweeping claim, with no discussion of the granularity contained within them or in original sources. One of the authors’ key arguments is largely based on extrapolating findings from a cohort of thyroid cancer patients to people with hypothyroidism, which is clearly not appropriate. Many areas of the paper lack balance, with a one sided view of the literature being taken (to use the author’s phrase-‘cherry picking’). One might be cautious that the contents of this paper might be misused as a ‘quack’s charter’, justifying use or adjustment of thyroid hormone replacement in any symptomatic patient, irrespective of serum thyroid hormone or TSH concentrations.

Given the important finding in 25,000 attendees at the Colorado Health Fair (Canaris Arch Intern Med 2000), in which it was found that 60% of biochemically euthyroid people had one or more symptoms of hypothyroidism, the approach suggested here cannot be endorsed. Similarly, even if one believes the unlikely prospect that people with true hypothyroidism may have normal serum TSH, an RCT showed that such people didn’t feel better during thyroid hormone therapy (Pollock, BMJ 2001). We wouldn't treat a patient for cancer without having histological confirmation, and we shouldn't treat patients for hypothyroidism without biochemical confirmation.

Specific issues:

1.“In an attempt to scale back on the avalanche of purported thyroid diseases created by this strategy, the TSH threshold for treatment was raised by recent guidelines (21)”. I would say the reason for considering that the TSH threshold for treatment might be raised to 10mU in most situations is that only 2 of 9 RCTs of levothyroxine in patients with a TSH in the 5-10mU/l range showed any improvement in symptoms. Therefore the evidence to favour treatment is weak; this is not an attempt to scale back on diagnosis, but to give patients appropriate, evidence-based treatments.

2.The arguments concerning thyroid cancer are spurious and irrelevant to patients who haven’t had thyroidectomy.

3.“Using the overall preference expressed by patients at the end of double blind studies as a proxy, patients did mostly favour T3/T4 combination therapy (29).” The problem with this assertion is that patient preference was reported in under half of these studies, so although widely touted by T3/T4 enthusiasts, there is highly likely to be reporting bias in this outcome.

4. “inferior quality of life instruments” The arguments that QoL questionnaires are misleading goes against the central tenet of QoL research, which is that the patient’s QoL is what the patient says it is. The fact remains that these same ‘inferior’ QoL of life instruments were, and still are, able to demonstrate meaningful QoL changes in many other conditions, but just not in the context of combined T3/T4 treatment trials of hypothyroidism. Which should we consider more likely; that the hypothyroid patient has an invisible QoL disturbance that can’t be found on questionnaires which are sensitive in multiple other conditions? Or that these frequently very vocal patients are susceptible to the placebo effect, which is abolished in the RCT setting?

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Do you thnk I am allowed to swear. Bxxxxxd!. I particualry dont like thefact that he sounds intelligent as well as wrong. Who is he working for because he is not working for me and I have over the years paid towards his wages. I hate nice guidlines per say and we would not be having this problem if a government had not decided to control our health. Of course our arguements and studies have a bias our bias is towards acheiving good health and supporting what we know is affective treatment. What is his I would like to know, money or worse I would imagine.

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Sorry Mandy, had to edit your 'not allowed' word :)

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Thats ok red apple I understand. I will amuse myself by thinking up some non swearing insults for him later

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I like OMG! or "Ye Gods!"

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He’s not intelligent he’s a damn fool

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My understanding is that most of the medical profession are damned fools when it comes to thyroid. This man I think is intelligent and wrong which I find more worrying than just ignorance this is malice. The silly damned fools will all listen to him though.

There are good people in the world who do bad things often for good reason and there are bad people in the world who only do good things to impress. This man is I think a bad person who has impressed the right people by doing apparent good things but is rotten to the core. I think.

My GP isa good person who neglects my health but I respect his boundrys and reasons he is too good to lose as a GP and if he got in trouble I would beleft with a group of nastys. Alot of doctors are tryingthier best and making do, trying to do as little harm as possible in a vile system. If it carrys on we will only have nasty doctors left.

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I think most doctors are well intentioned but probably lacking proper training in thyroid matters and not inclined to do much research on it - although I think it would be very interesting. I just saw red at the mention of the TSH of 10 which is preposterous as a supposed upper limit of normal which science simply does not support. That in my view is a foolish opinion and I will not be disuaded otherwise. I know there are malicious and mysogynistic people some of whom are medical professionals but I trust they won’t become the majority

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My friend, who was also my doctor and has now retired, came for dinner last week. Now he’s retired, he’s much more open about things. He admitted that he’d never even heard of Hashimoto’s Thyroiditis when I told him that’s what I thought I had during a consultation in his surgery. And he said he’d barely studied how the thyroid worked as a student. My tsh went up to 9 before he started me on thyroid meds. I was so ill I felt like I’d been run over by a truck.

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We are not medics but because we can feel so ill, as you point out, we research and learn about the condition. What excuse does a medical practitioner have? I teach young children. If they struggle to achieve and learn, I accept that there may be something I’m missing. This motivates me to investigate and ask why? Surely this is what professionalism is all about?

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I recently had to go to the doctors, where I had an appointment with a young newly trained medic from a good med school. In the course of conversation I asked her how many hours in her course did she learn about endocrinology and hormones. Answer: 10. A lot of hormones to go through in that time I think.

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Am I surprised? This thread is like War and Peace! More war me thinks. It is so heartwarming to know that passion is alive and kicking.

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The ‘I have little training’ cry coupled with the patient who thinks he/she has an audience with God is a dangerous situation.

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Very depressing indeed. But hats off to you for still being one of those rare, almost lonely voices that keep arguing for a better, more systematic, scientifically based and medically driven (read - patient centered) approach to understanding the treatment of thyroid disorders.

I hope another journal will publish your paper, though!

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Is this a reviewer in the BMJ diaoganses. I thought it had to be really good science to get into the BMJ. Can you write a response?

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apologies I see they rejected your paper based on this idiot. Not so scientifc after all. can we as patients protest about having this man involved with nice guidelines. Who decides who make the decsion for nice guidlines. We are only vocal as we are now well enough and I can be very vocal if I put my mind to it.

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Natural politeness prevents me. Unprofessional ripostes get nowhere to closed minds.

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Is there other journals that might publish it?

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We shall certainly try, but I wanted to get a hearing in the UK journals first. Seems that IQs here aren't up to it!

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Think that is problem - they are hiding behind their ignorance.

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Thank you.I respect your wisdom in knwing whenyou have hit a brick wall and not banging you head again.

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I think I can guess who the person is and he doesn't qualify to use the word doctor or endocrinologist.

Superior and unknowledgeble goes hand-in-hand and the difference between healing patients or discarding them is due to the insistence that the 'guidelines' provided by the BTA and RCoP is the way forward. Has he had any rewards from Big Pharma?

I can just imagine how you and colleagues have taken his response.

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Diogenes

What ????? Is This REAL ?????

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I am weeping into my lunch. His own bias is very evident, as is his own ego. Thank you Diogenes for being a voice of reason amongst the blinkered mainstream. It is so sad that the science is disregarded as it doesn’t conform to someone’s world view. Good scientists except that as new information becomes known, the world view changes, but not in endocrinology obviously.

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Is this the guy on the NICE Committee? If so how is his stance going to allow for patient voice?

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He says we are too vocal. perhaps as women we are supposed to be silent and not ask questions and just accept poor treatment. Can we do anything to get him off Nice committe.

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Well a useless haematologist wrote to my GP “ she is so articulate...” simply because I was challenging him each time he tried to stop me self injecting B12, and stating T3 was not necessary for hypos... I did not go to consult him (privately) for those reasons and he was unwilling or unable to address the problems I went to see him about. Such an ignorant egotistical and patriarchal waste of space!! So nothing surprises me anymore but feel angry Diogenes’ paper has been dismissed by such an ignoramus.....

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Yes it is....

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That committee is so biased! Cherry picked!

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That’s an insult to a cherry 🍒 😂🤣😂

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I just tried finding Dr S.Pearce on Google. He does not seem to exist in any mentionable form and cannot be a particularly learned professional in any field, or he would instantly have come up with reams of qualifications and books and published works. Who exactly is this man who will be seriously affecting our future lives? Diogenes, do you know anything about him worthy of our confidence in his opinions?

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Here he is in all his self proclaimed glory:

I qualified in Medicine MBBS with 1st Class Honours from Newcastle University. Following internal medicine training I undertook postgraduate training in endocrinology at the Royal Postgraduate Medical School, Hammersmith London (MD degree awarded with distinction), Brigham & Women's Hospital, Boston USA, and latterly in Newcastle.

I was appointed as Senior Lecturer in Endocrinology in 2001 at Newcastle University and promoted to Professor in 2007, affiliated to the Institute of Genetic Medicine.

I have worked at the Royal Victoria Infirmary for 16 out of the 22 years since I qualified as a doctor. I have also published more than 100 research papers about endocrinology over the last 20 years.

I work nationally and internationally on the executive committees for both the British and European Thyroid Associations. I am on the editorial board of two international endocrinology journals. The main theme of my current research programme is to develop a cure for Addison's disease and adrenal failure.

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endocrinologyblog.org/2017/... "I have published around 150 papers over the last 20 years spanning molecular endocrinology, clinical trials and guideline papers."

Not that I am one to quibble but did he write 100 or 150 papers in the last 20 years?

Maths is not my strong point but is that a 50% error? Doesn't instil me with confidence in the accuracy of any of his own research!

"As Programme Secretary I organise the scientific programme for the annual conference. It’s a great privilege to be able to choose the speakers that I want to learn from. My assumption is that if I am interested in the topic, then it will interest others too." Sounds like a total narcissist.

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Or a careful selector of those who won't rock his boat.

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Or 130 over 20 years?

Simon Pearce

Programme Secretary

Simon Pearce is Professor of Endocrinology at Newcastle University, where he qualified in Medicine. Professor Pearce also undertook postgraduate education in endocrinology at the Royal Postgraduate Medical School in Hammersmith and Brigham & Women’s Hospital in Boston. Simon was first appointed Senior Lecturer in Endocrinology in 2001 at Newcastle University and became Professor in 2007.

Simon has served on the editorial boards of the Journal of Clinical Endocrinology & Metabolism (2008-2010 and 2013-2016), Endocrinology (2012-2014) and the European Thyroid Journal. He was a member of the British Thyroid Association executive committee between 2006 and 2012 and the European Thyroid Association between 2011 and 2014.

Simon’s main research area is the treatment for autoimmune thyroid disease, including thyroid eye disease and Addison’s disease. He has published about 130 papers over the last 20 years spanning molecular endocrinology, clinical trials and guideline papers.

endocrinology.org/about-us/...

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Yup I do admire and trust a person of consistency and attention to detail......! :P

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Maybe he wrote some and just put his name to others! LOL! Hence he can't keep count...

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Worrying that his main research area also includes TED and Addison's two other areas that are poorly understood and ignored. A triple whammy - We need to start looking closely at these '130/120/150' papers to see where his allegiance lies! Who is paying for his 'papers'?

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Usually are...wasn't Hitler!

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Oh dear. Full of his own importance and hot air - the very worst type to be dealing with fragile thyroid patients, although he does not mention actually seeing and helping patients, fortunately. Heaven help any that get sent to him for diagnosis.

Why does the field of endocrinology attract people like this? I made the mistake of seeing a professor in Harley Street when I was desperate for help. The message was much the same. He was right and I was wrong and my symptoms were all in my imagination. The TSH blood test is exquisitely accurate. End of story and goodbye....

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The worst type, but seems to be the 'stereotypical' type. Hence the current poor situation for us all.

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I haven't come across this specific endocrinology blowhard in my region, but from what I've heard, they all sing from the same hymn sheet. The RVI in particular seems to specialise in churning out bombastic egomaniacal medics. I live next door to two of them; more of them come to visit, and the whole village gets to know about it.

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Hmm, the RVI is the pl\ace where they told me I was normal after an insulin stress test caused me to collapse, so perhaps I've already suffered from him. So he didn't do much for my adrenal problems.

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He is an Endo in Newcastle and on the NICE committee review of thyroid disease... clearly will not advocate for patient cratered care and his website write up says he would never prescribe animal products...

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The phrase I find most offensive is ‘frequently very vocal patients’. I’m not naturally ‘very vocal’ and when experiencing the effects of hypothyroidism am even less so. But I found that I either became vocal and pestered, or just gave up on my life and the plans I had made for the future, including plans for my children. I used to always rest before seeing my GP, it was the only way I could get through the appointments, which invariably involved arguing for a higher dose despite test results that did not support an increase

Has he never stopped to consider why one group of patients are ‘frequently very vocal’? Perhaps it is because they are receiving a c... standard of care from endocrinology.

Shockingly bad news that person is in such a powerful position. I wish with all my heart that he develops a rapidly deteriorating hypothyroidism.

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What ever he develops and I doubt it will be hypothyroisim, one day he will be on his death bed and when he is I dont think he will be proud of his acheivements especially this one of stopping progress toward good practice for us lot.

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I’d just like him to experience the powerlessness of having symptoms that don’t match the test results, and being told he’s fine / must be imagining it / is depressed. And I’d like him to experience how poorly you feel when your body stops converting T4, while trying to hold down a job, look after a family, ageing parents and a house.

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maybe we should be asking for all endo to have thier thyroids removed as a prerequisite for being able to treat thyroid patients or at least have some kind of thyroid desease.

Thinking of which I have never seen a fat doctor and being as 50% of the population are genetically desposed to having weight issues that suggests they only take on slim JIMs at med school

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My Endocrinologist (in states) told me yesterday that both her Mother & her have hypothyroidism. One would never know it looking at her, she looks as if she has a ways to go to reach 20 years. More women in the field may help our cause.

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You've obviously never seen my barrel of a doctor...

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Is he an older man as sometime they get a bit tubby as thier thyroid packs up toward retirement.

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Not exactly, he's probably in his early 60s now, but he's been a barrel ever since he joined the surgery as a student back in the 80s! I've never known him to be anything other than a barrel!🤣

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Zephyrbear that is probably down to 'good living' LOL It is not about weight, size or such - but about metabolism and how the lack of thyroid function has a knock on effect on other things. If your Dr does not have a thyroid disorder whatever is causing his size, may not be affecting his brain function.

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LOL mandyjane love your thinking! But think about it further - most of us thyroidities have had our conditions impact massively, on our lives, along the way - education = largely female health issue - how many of us missed school as problems every month - fainting, or too heavy to leave the house? How much did tiredness, discomfort from coldness, brain fog and poor concentration and memory impact on our ability to progress through education?

How many of us struggled with anxiety/panic attacks at times of exams?

How could any of us have a hope in hell of getting to be doctors!

My son is 3 years behind with his education - he has adrenal problems, probably inherited, but not diagnosed by the GP - they have tested him for everything but. Dr P diagnosed likely adrenal dysfunction. The only thing that makes sense.

Throughout our working lives, how much has our 'weight' problems held us back? The constant yawning? And looking pale and tired? Not a good look in the work place. How many of us have had our abilities overlooked because there was a fitter more healthy colleague?

Imagine what we all could have achieved if we had not been plagued by thyroid/adrenal dysfunction!! Perhaps there would not be a shortage of good doctors!

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Absolutely Aurealis ~ spot on! x

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Of course, he'll be ecstatic on his death bed at protecting those silly women from quackery, when they just need to pull themselves together and get out there and exercise - more housework would do it - so their minds don't dwell on their health ...

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Angel_of_the_North He probably rues the day they decided that 'females' could be educated!

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We have to be ‘frequently very vocal’ with all this malarkey. I had a bit of a row with my local pharmacist last week when I asked her to make sure I only received Mercury Pharma Liothyronine. She told me, in a very crisp voice, that it was very expensive and I should be grateful for the Teva brand I’ve been getting. I told her, in an equally crisp voice, that I was well aware of the cost, but needed it to stay well and healthy. I then quoted the price of Mercury Pharma, Morningside and Teva Liothyronine and said, ‘As you can see, there’s a difference of a few pennies.’

I got a text a few days later saying my Mercury Pharma Lio was waiting to be picked up. If we aren’t ‘frequently very vocal’ who the hell will stand up and speak for us?

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Interesting fortunata , because I have recently had a conversation with my local pharmacist , as they could no longer supply the Thybon Henning brand they have been getting me for the last two years. (They instigated the TH brand when the Mercury was difficult to get around 2 yrs ago I found it better and have asked specifically for it since, it is now specified on my prescriptions) Anyway, he said he could get me the UK brand instead, when I voiced that I had concerns as TH was obviously much cheaper and a more expensive brand may impact on the GP being 'allowed' to continue to issue it, I was told that the cost was irrelevant that they get paid the same by the NHS no matter what brand they source?

I get my TH but have to drive across the other side of the town to a specific Chemist - one of the few still using the wholesaler importing it. (no doubt for a lot less than the UK brand! )

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You’d think they’d jump at the chance to get a cheaper, but equally effective, brand.

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Got to question why not?

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No, nothing logical about the NHS.

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With some horrible bouts of hypo thrown in fur good measure and is told it is all in his mind and to go away until his TSH is over 10 or as in my case over 110 he would enjoy that experience I am sure.

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Im with you there, lets see how he would cope with this rollercoaster disease because one thing for sure is.. he would be swallowing his thyroxine like smarties and upping the dose every time!!

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No, I’d want to dispense them one at a time - to cause him maximum inconvenience And he can get each one dispensed in a different country ...

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Thats a great plan-cruel but soo fitting😊😊😊😊😊

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I wish I could give him a TSH of 10 and see how he likes it. It is a vvery disappointing read. Why do es he want the truth suppressed?

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Well, he seems dead set on giving older people a TSH of something like that!

PMID: 27766119

Study of Optimal Replacement of Thyroxine in the Elderly (SORTED) – results from the feasibility randomised controlled trial

Salman Razvi,corresponding author1,2 Lorna Ingoe,2 Vicky Ryan,3 Simon H. S. Pearce,1 and Scott Wilkes4

Abstract

Background

Hypothyroidism is a common condition, particularly in the older population. Thyroid hormone requirements change with age and serum TSH levels also alter, especially in older patients. However, in practice laboratory reference ranges for thyroid function are not age-specific and treatment in older patients aims to achieve a similar target thyroid function level as younger age groups.

Methods

A dual centre, single blind, randomised controlled trial was conducted to determine the feasibility of a future definitive RCT in hypothyroid individuals aged 80 years or older who were treated with levothyroxine. Potential participants were identified from 17 research-active GP practices (n = 377), by opportunistic invitations (n = 9) or in response to publicity (n = 4). Participants were randomly allocated to either usual (0.4–4.0 mU/L) or a higher (4.1–8.0 mU/L) target serum TSH range. Information on participants’ willingness to enter the trial, acceptability of study design, length of time to complete recruitment and dose titration strategy was collected.

Results

Fifteen percent (57/390) of potentially eligible hypothyroid individuals consented to participate in this trial and 48 were randomised to trial medication for 24 weeks, giving a recruitment rate of 12 %. Recruitment averaged 5.5 participants per month over approximately 9 months. Eight participants withdrew (3/24 and 5/24 in the usual and higher TSH arms, respectively) with the commonest reason cited (5 patients) being tiredness. Interestingly, 3/5 participants withdrew from the site that required a visit to a Research Facility whereas only 5/43 participants withdrew from the site that offered home visits. In the higher TSH arm, of those participants who completed the study, approximately half of participants (10/19) reached target TSH.

Conclusions

It is feasible to perform a randomised controlled trial of thyroid hormones in hypothyroid patients aged 80 or older. A definitive trial would require collaboration with a large number of General Practices and the provision of home visits to achieve recruitment to time and target. Power calculations should take into account that approximately 12 % of those approached will be randomised and 1 in 6 participants are likely to withdraw from the study. Finally, several dose adjustments may be required to achieve target serum TSH levels in this age group.

ncbi.nlm.nih.gov/pmc/articl...

To me, the number who consented seems quite low - 15%. I do wonder what the consent document said? I have asked for a copy of that.

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Where did they get this idea that older people are well with such a high TSH? I cannot see why this should be the case. Hasn’t there been recent work to say Alzheimer’s is improved with thyroid medication? Heart problems improved with T3 etc etc.

Has a TSH test been done on a large cohort of very fit and healthy 80 year olds with no evidence of thyroid disease, showing they are clustering at 10? And if you say a TSH of 10 means you are fit and healthy and free of thyroid disease it becomes a self fulfilling prophecy.

I wonder what the 80 year olds on here think.

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I wonder how many who are on this forum would ever consent to such a "trial"? I absolutely and most definitely would decline the opportunity while still of sound mind.

Most organs seem to work less efficiently as we age. Why, then, do we see these suggestions that somehow the pituitary suddenly decides to make much MORE TSH? And, apparently, this extra TSH is produced despite our bodies actually not needing any more thyroid hormone?

If TSH is no longer this "exquisitely sensitive" and apparently perfect test for determining thyroid hormone adequacy, just when does it go spectacularly wrong? When we are 50? 60? 73¾? (Or is that reserved for an ageing Adrian Mole?)

So just where is the FT4 and FT3 data?

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Some hypothyroid people have never managed to make much TSH, including me. I'd probably find myself being taken off my meds altogether if the NHS were the ones supplying it.

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Well I seldom make TSH also. As a result I’ve frequently had to become very vocal ... 🙂

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Good point 😉

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Is there anywhere you can leave a letter about this "research", saying what you've just said about the absurdity of it? Because it is such an important point that it needs to be made where people other than us can read it.

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Has a TSH test been done on a large cohort of very fit and healthy 80 year olds with no evidence of thyroid disease, showing they are clustering at 10?

You might find this link of interest :

healthunlocked.com/thyroidu...

It shows that the median TSH for healthy women aged 80+ was 1.70.

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Thanks hb so it’s a load of hocus pocus as I suspected

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Who on earth would consent to levo therapy! The 'dropouts' probably felt really ill on it!

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Read and despair.

Well, perhaps, diogenes, for now.

Point and laugh. That's the future. We just have to wait for our grandchildren to come to that conclusion when more is known. You and your colleagues will then be groundbreaking researchers and his ilk will be self serving antediluvian pseudoscientists.

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Spot on Rapunzel!

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His full contact details are in this link: thyrolink.com/merck_serono_...

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Ah I see the two necklace like wrinkles on his neck so perhaps he is on his way to having a Thyroid problem ! Merck - so are they paying his salary or silence money !

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I had the same thought about Merck. Really objective sponsors, eh?!

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Is there a difference?

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Thank you Diogenes

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His opinionated and blinkered (and probably financially biased) appraisal of your work is insulting not only to yourself, but also to the many thyroid patients who despite being "frequently very vocal" for many years, have continued to suffer with inadequate treatment, and have lost much as a result.

So, as one such patient, perhaps he will forgive me for following a "quacks charter", especially as I am seeing an improvement for the first time in 25 years with the T3 I have recently sourced for myself. And please know, I say this with FULL understanding and perception of the "quality of life" that I LOST!😕.

I only have this forum and good people like yourself to thank for that improvement.🌻

Thank you for sharing this ~ it helps to understand all the barriers and pitfalls on both sides of the fiasco that is thyroid treatment. I hope you can quickly put his contemptuous remarks behind you and move forward with your work ~ he has a completely different agenda, which will not lead to patients well being. I wouldn't let him anywhere near MY adrenals!😊 x

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There is only one answer. Truth does not belong to Diogenes or Pearce or anyone else. You are either right or wrong, and that is it. No amount of bluster from me or anybody else can have any effect on reality in the slightest.

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Will the truth out?

Martin luthur Kind did an amazing speach about thepower of truth I will try to find it and post to cheer us all up

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However, sometimes we are not in possession of all the facts, so what appears to be true could change.

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As far as I can see, there isn’t really any truth - as everything has its own context, it’s own time, that informs the current perception and knowledge base. However, given our current knowledge and good quality research, I know who I think is nearer to “the truth” in this case.

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I am not sure if this has worked if not could someone instruct me as to how to copy a utube video onto here.

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Killed by the state. Happens every time. ☹️

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I read this today in a comment elsewhere, on a different subject, but it fits here.

To the medieval mind only heretics ask questions.

I think Pearce comes across as being somewhat medieval. He doesn't burn people at the stake, he just tries to make ideas he doesn't like disappear.

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What a brilliant quote, HB.

I'm fond of this one by T H Huxley: "Science... commits suicide when it adopts a creed."

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I love your quote too, Hillwoman. :)

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He metaphorically burns a lot of women at the stake (and some men) - suffering unnecessarily with hypothyroid symptoms.

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He manages some impressive conjuring tricks as well! As in the brief extract below. Let me ask, how could <anything> improve symptoms in asymptomatic <anyone>? Yet he manages to write and get published a paper which makes a statement that means absolutely nothing.

What a shock if it had improved those non-existent symptoms!

BMJ Evid Based Med. 2018 Feb;23(1):39-40. doi: 10.1136/ebmed-2017-110819.

Low-dose levothyroxine did not improve symptoms in asymptomatic older people with subclinical hypothyroidism.

Pearce SHS1,2, Gan EH1,2.

Author information

1 Institute of Genetic Medicine, Newcastle University, Newcastle upon Tyne, UK.

2 Endocrine Unit, Royal Victoria Infirmary, Newcastle upon Tyne, UK.

KEYWORDS: thyroid disease

ncbi.nlm.nih.gov/pubmed/293...

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Well spotted! That is absolutely incredible! Illiterate medicine?

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Also one of the authors of the paper Lyn Mynott posted about recently:

healthunlocked.com/thyroidu...

I'll quote one tiny bit:

GPs and pharmacists generally perceived that patient knowledge of thyroid function was basic. Pharmacists mostly felt that patients were unaware of the risk of undertreatment or overtreatment with levothyroxine:

I don’t think many of them can really tell you what it’s for, what the thyroid does or what the risks are of going too high or too low. (P-1)

There's plenty here who would invert that to this:

Patients generally perceived that doctor, nurse and pharmacist knowledge of thyroid function was basic. Patients mostly felt that doctors, nurses and pharmacists were unaware of the risk of undertreatment or overtreatment with levothyroxine.

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Wow!!😱 Amazing what you can do with big pharma in your pocket! 🍄 My symptomatic mind is well and truly boggled!!😳

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Well, you don't actually have to do a study to prove that do you? If there are no symptoms, nothing is going to improve that which does not exist. QED. Might as well have done a study entitled, "Feeding linseed cake does not remove stripes in non-striped cows" and it would be just as useful.

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How sad for you, Diogenes, after all your hard work, and for the rest of us, that this misguided, ignorant man wields such influence.

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No problem! Undaunted we're writing a paper that demonstrates that the way clinical trials have been done to demonstrate eg no advantage of T4/T3 therapy over T4, TSH effects on AF and osteoporosis, Quality of Life versus TSH and FT4/3 are all fatally flawed because of bad statistics and wrong conclusions thereby. This is the biggest allegation one can make; that ALL trials so far done aren't fit for purpose and don't show what they say they do. Get over that, Dr Pearce when it finally comes out. That all you rely on is a paper tiger.

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Diogenes ...just let my husband loose on them for 5 minutes ..he will tell them that since age of 28 reliance on TSH , levo and even T3 totally wrecked his life

And that only NDT for the last 12 years has given him quality of life shame he had to wait till he was 63 to start on NDT and only be able to enjoy life 63 to 75 just hope he has many more years left to enjoy but i will never never forgive the entire Endo profession for his suffering ...Dear Prof Lant was the only medic worth a candle but his peers didnt like it that he was able to diagnose what they were proved incapable of

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Good for you Diogenes👍. Let him put that in his pipe and smoke it! As my old mum used to say😊.

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Bring it on!

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Well done and all the best - let's hope that paper WILL be published.

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diogenes This has infuriated myself and others no end. I can't imagine how you and the other authors are feeling! However, @Linda96 and I have been discussing this review and for what it is worth we feel it does warrant a response to counteract the levothyroxine blindness. We feel it raises many counter questions.

Firstly, can we clarify, is it you wh, in this post, is saying that you are not an enthusiast for combined T4/T3 therapy? If so may we ask why?

a) NICE are not re-examining the Thyroid Guidelines, I spoke to NICE in 2017, who stated that the scoping was for new Guidelines as currently only Clinical Knowledge Summaries exist. This with be the first NICE Thyroid Guidelines to be published.

b) Dr Pearce refers to the sweeping and unsubstantiated statements within your paper. Yet, the protocols patients are being forced to live by, are based on sweeping statements such as 'the overwhelming majority of patients do well on T4' as published and quoted by the BTA and others. Where is the evidence to substantiate their claims that L-T4 monotherapy, and TSH testing, is all that is necessary? We are all individuals with individual HTP axis set points and with other conditions or co-morbidities which impact on individual thyroid clinical needs. The BTA Primary Hypothtyroidism Statement 2015, is usually quoted but is based on limited and L-T4 biased 'so called' evidence. With no consideration for the known polymorphisms.

FOI requests were made, by ITT, to determine the numbers of patients using L-T4 monotherapy, L-T3 monotherapy, combination therapy and NDT therapy. These figures were not available. ITT have requested, to NHS England, that granular segmentation is applied to the Endocrinology statistics, already collected, to identify the exact numbers and treatments of hypothyroid patients.

Currently diabetes figures are the only ones segmented.

c) Dr Pearce has the audacity to mention the imbalance he perceives within your paper, yet thyroid patients everywhere have, for decades now, been subjected to the L-T4 mono-therapy protocol. If this is not a perfect example of a one sided view then what is? The dogmatic adherence to the BTA 2015 Primary Hypothyroidism statement, promoting the L-T4 monotherapy treatment protocol, and the need for TSH only testing, to determine thyroid health. Ignoring the advancing knowledge of thyroid disease and the genetic impacts that are now clearly evident, is nothing more than neglect of duty. This has led to the subsequent abuse of patients who are all too often ignored, told or made to feel psychosomatic.

Furthermore the BTA 2015 statement on Primary Hypothyroidism, is based on the ATA and the ETA Guidelines. Was this with robust substantiation or on face value of these documents? Was there a balanced view underpinning these two documents?

d) The derogatory comments referring to the 'Quack's Charter' seem somewhat unprofessional, antagonistic and down right rude.

Prior to the introduction of the TSH testing protocol, patients would have been assessed on clinical observations and symptoms and introduction and adjustments of thyroid hormone replacement would have taken place until the symptoms had abated.

Where Dr Pearce says " ...justifying use or adjustment of thyroid hormone replacement in any symptomatic patient, irrespective of serum thyroid hormone or TSH concentrations." just highlights the very problems that continue to exist for patients. The blind reliance on biochemical TSH/T4 results, is leaving patients still symptomatic and ill. This raises the question as to the validity of the ongoing reliance on the TSH test as an indicator of euthyroid state.

Possibly of more importance is the fact that the TSH is a pituitary hormone not a thyroid hormone. How can this be indicative of total thyroid health?

e) "Given the important finding in 25,000 attendees at the Colorado Health Fair (Canaris Arch Intern Med 2000), in which it was found that 60% of biochemically euthyroid people had one or more symptoms of hypothyroidism, the approach suggested here cannot be endorsed."

Who has submitted this as a statement please?

Is this saying that up to 60% of people could be hypothyroid or is it saying that this is why symptoms cannot be relied upon?

This seems to be irrelevant information which clouds the issue, as the one symptom these people had may have been a symptom of another condition, as yet undiagnosed. It could be that those people had hypothyroidism but as yet this was not clear in the bloods, i.e Hashimoto's which is known to cause fluctuating blood levels, making it hard to diagnose. Or they may have had subclinical hypothyroidism, which is still hypothyroidism.

I find the use of the word 'important' to be somewhat leading the reader to accept a statement as unquestionable.

f) The use of the words 'True Hypothyroidism', is not defined.

With reference to the Pollock study, mentioned, Is it possible that the cohort, whom had normal TSH but did not feel better during treatment, were actually not optimally treated? Therefore, they would not feel better. Was consideration given to the fact that they may have a defect gene and be unable to convert the T4 to T3?

Patients would feel much happier relying on biochemical confirmation if that biochemical process was complete. The current protocol is to test TSH, and maybe T4 only. Patients are struggling to get full thyroid panel testing done. So why should patient be reliant on inadequate biochemical testing? Particularly with the current down grading of the importance of clinical observations.

g) "...only 2 of 9 RCTs of levothyroxine in patients with a TSH in the 5-10mU/l range showed any improvement in symptoms. Therefore the evidence to favour treatment is weak; this is not an attempt to scale back on diagnosis, but to give patients appropriate, evidence-based treatments."

Raising the TSH because only 2 out of 9 RCT's showed any improvement of symptoms on replacement treatment, seems to be looking at the problem from the wrong angle. Surely if 7 out of 9 cohorts did not show improvement on replacement therapy, it should suggest that there is failings in the dosage or the type of replacement ?

How is the evidence to favour treatment weak? Again it should be highlighting the failings in the diagnosis and treatment itself, not denying the need for treatment. That patients is presumably still symptomatic.

Evidence based treatments can only become a reality if the evidence is gathered. Ignoring the evidence means they can deny the need?

h) There is a comment regarding patient preference, in favour of combination L-T4/L-T3 therapy, which is dismissed because patients were asked in less than half of the studies.

Why were patients not asked in the other studies? Surely this would have provided a clearer view of effect. This comes back to the fact that statistics on patient preference is inaccurately reported, if at all.

When the decision is made that the patient is not responding well to the standard L-T4 medication, rather than investigate why, patients are dismissed as psychosomatic. Without consideration that the testing and treatment protocols are not suitable for that particular patient.

i) "... these frequently very vocal patients are susceptible to the placebo effect, which is abolished in the RCT setting?"

Again the wording here is both derogatory and stereotyping. Both morally wrong. If patients are very vocal it is likely because they have endured many years, and decades, of being forced to accept a regimented protocol that has not alleviated their thyroid disorder symptoms. They have been ignored and left ill and they have had their lives, in some cases, destroyed. Many have had to forfeit jobs, relationships, family and life opportunities because of ongoing, increasing and relentless symptoms.

Does the QoL questionnaire ask the right types of questions? Does it really establish the real cost of hypothyroidism to the patient or does it cover the basic impediments of ill health without the real understanding of the extent and the reality of the impact. Perhaps the QoL questionnaire is adequate in most situations but not in all.

So, following this epic rant, the point being made is that, whilst it is understandable that a riposte may not be seen to be good manners, if a response is not made to the review that Dr Pearce made, might it be taken, by some, that the criticism of the paper is justified? And, to our thinking, a response is needed somewhere from someone. Who would be the best person/persons to respond, and whom to? Would a response to the BMJ be appropriate? Perhaps from the other authors?

Your thinking on the current diagnostic protocols should not be dismissed on the grounds of one review, by someone who is obviously so well entrenched in the current staid thinking, of total dependence on biochemical testing and L-T4 monotherapy, to the detriment of new scientific understanding of genetics. Without the newer ideas being aired how will science and medicine ever progress?

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Thanks ladies - I knew my suspicions about the emeritus prof were justified !

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And seriously worrying re the NICE Guidelines lidoplace as we suspected!!

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Do not mistake me when I say I am not an enthusiast. What I mean by this is that I try to act as a disinterested (in the oldfashioned meaning of the word) scientist who is not and professionally cannot moved by emotional matters in trying to understand a situation but use logic and rationality and acceptance of immutable facts as they emerge. Let emotion get in and bias surely follows. This is just like a doctor-patient relation. It has to be understanding, open to discourse both ways, and sympathetic, but on another level it must be dispassionate, otherwise the doctor would have a nervous breakdown if they took everything to heart from each patient.

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diogenes Thank you, I appreciate your explanation. That makes a lot of sense.

Unfortunately patients are going to be very emotional. And that is probably the reason we are not taken as seriously as we should be. But how can we be otherwise when most of us have been so poorly treated for decades. I know I am not alone, in that for 10 years I was asking about my thyroid saying there was something wrong, to be told I was fine. Even when I was proved right after a decade, I was still ignored and made to feel psychosomatic for a further 20 years, and fobbed of with T4. Having been on T3 only for 8 years now, has yet again proved me right. And still I am ignored? The point being that patients are more often than not is the best judge of their own body and what is happening.

How will medical progress be made if the medics dogmatically stick to what they are taught and stop thinking for themselves when patients do not fit into the designated 'box'?

It is the closed-minds that are dangerous. Has history not taught us anything?

You are right it has to be open discourse between Dr and patient, but this will be irrelevant and meaningless if the treatment options are removed, which is what his happening. Neither will this be possible if the doctors are going to present to the patient with a single minded view of what they will consider or not. Many are already facing patients with predetermined decision and spiels as to what they will and won't consider. i.e. the lady I mentioned who was told T3 same as cocaine. I atttented an Endo appointment with a friend last year. The Endo denied knowledge of NDT (which the patient had started on having failed on T4 following a thyroidectomy) He also stated he did not know what rT3 was. I found this hard to believe, and felt that both these comments were just a predefined decision to not consider the need for either. T3 was not an option. We prompted the Endo to consider a Hypopituitary issue, from the patients history. He reluctantly agreed to test LH/FSH. The patient had the tests done. She has since been for a follow up, 'they' are unable to find the test results. The Endo she originally saw is no longer there.

These ever increasingly poor encounters between patient and Endo is destroying the relationships between patient and medic, and destroying all faith. It is wasting time and leaves the patient no further forward, ignored and neglected.

There is no understanding. There is less and less attempts, by the doctors, to hear and understand their patients. Instead doctors are preferring their relationship with that bit of paper with blood results on, and they are not prepared to consider anything that is not endorsed by NICE/NHS. Are these medics aware of the bias dictating their decisions? What is closing down their own minds? Fear or Arrogance?

This is why I feel we have to question and respond to all claims made for the sole adherence to limited testing and treatment, until someone, somewhere, provides a reasoned and valid answer.

The work you and your team are doing is invaluable and I would urge you to continue to push forward and to fight for the right to the opinions you support to be aired. Without the unemotional support you offer we are unlikely to be taken seriously. So thank you and all the team for all you are doing.

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UrsaP Your thought process and writing are to be greatly admired. Methinks you are currently well on your T3. I could not have written a succinct, thought provoking & intellectual essay such as yours.

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LOL marigold22 ! Thank you. Not sure about intellectual??? I currently could be better but have been a lot worse! Just my ranting at the whole system, having heard yet more awful stories of late. I count myself so lucky, next to many I got off lightly! And I'm still getting the T3 I need. The knowledge of the benefit it has given me, when so many are being refused and having it withdrawn, is what infuriates. There are enough of us who have/are benefiting but no one is listening to us - no one wants to acknowledge. That way they can ignore/deny the need of others.

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I think diogenes means that he is a researcher, so if the facts show that T4/T3 is better than T4 only, he'll report that; if it doesn't he won't. He doesn't have a personal agenda, which is probably what Pearce is accusing him of.

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Yes I do realise that. But a point well made.

The problem with the 'facts' is that there are so few, and many, such as the newer knowledge of, and impact of, the gene defect, are being ignored. With current protocols being enforced on the back of total reliance on somewhat biased, lacking and dated 'evidence', we need all the help we can to promote the trials and studies to provide newer 'facts'. Bearing in mind that the 'facts' are only fact's in relation to the current knowledge available. As science progresses, which it inevitably does, and will continue to do. So any fact is open to being disproven, and there will always be a need for further research.

All previous studies, being used to back up the current T4 mono protocols, are based on cohorts that were not tested for gene defects for a start. It is likely that they were chosen by use of TSH testing to define Euthyroid or Thyroid states. We now know that the TSH is questionable.

So in the meantime, whilst there is a lack of distinctive and defining trial and study material and evidence, and an increasing disillusion and growing confusion surrounding thyroid treatment, patients need to be listened to and heard. Treatment options need to be kept available until they can be irrefutably proven to be ineffective.

I think you are right about Pearce and the thing here is that he is more likely the one with a personal agenda! Fame and fortune!

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Awesome rant UrsaP 👏🏻

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I'm of the thought that now we have to make them justify everything they say - force them to produce the evidence to back their thinking because it seems that certain people can say what they like and it is taken as read, no-one questions the validity of it...

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Yeah its wrong to say T4 only for all is based on scientific evidence because majority feels well on T4 only. It's statistics based medicine which isn't purely scientific.

If scientific evidence proves majority feels well on T4 only it also proves ,in same sentence, that some do not do well on T4 which, if practicing science based medicine as they say ,should lead to obvious conclusion to use other type of treatments for those who do not do well on T4. It's unacceptable to ignore patients who do not recover on T4. They should either admit they are wrong or to be honest and admit they have no intention to consider other type of treatments as majority do well on T4 only and it is good enough, rest can be sacrificed.

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I'd say the first, relatively easy, step would be to demand proper application of the "informed consent" principle. In the best areas of medicine, great care is taken and documents produced. Most of us have received a few spoken words and a prescription.

Simply ask for written information.

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Im not sure Justiina, statistic based medicine would imply figures are recorded but are they? And what are they. I believe FOI has been sought on the figures, none kept. Only diabetes segmented. So saying the majority do well on T4 mono is nothing more than a vague 'sweeping' statement!

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True! I automatically assumed there is number they can show. T4 only trials have never interested me enough to search!

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Hi that’s correct. I did an FOI on NHS digital and prescribing and neither have the number of hypo patients or how well we do. I am now waiting on a response to a request to collect data on us.

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Ooohh ... I wouldn’t consider that a rant at all! It’s more a call to respond in a considered professional yet robust manner.

If I had to describe professor Pearce’s analysis of the paper briefly I would have in mind “close-minded bluster”

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I think maybe I'm known for my 'rants' MikeM46 But yes, you are right it is a call for us to stop accepting the 'close-minded bluster' that seems to be the only available response, which only hides their lack of understanding of the whole situation. These so called experts are hiding behind their qualification as if that is the be all and end all, and as if their word is unquestionable. Allowing this to continue unquestioned, is, in my opinion, feeding the situation, boosting their already massive egos, and causing more widespread damaged to good common sense medicine. To block all new thinking so adamantly is not good science.

The question is why? What is the underlying goal of pushing all confidence of the use of T3 for thyroid conditions out of medicine?

Yesterday I had a conversation with someone who's Endo (So-called specialist) actually tapped her on the head and told her it was all in her head and that T3 was just like Cocaine and had no medical use other than to make her feel like she was having illicit drugs!!! That if she continued to take it she would only want more? Was he insinuating that it was addictive?

Surely this is nothing short of abuse!! I have asked her to report him as he is not fit to see patients.

Where has professionalism gone!!

The time for good manners is gone. Etiquette has no place here now.

There are a number of these 'known' Endo's who are promoting themselves as the experts and dictating our health. With no-one questioning these people or making them produce the unquestionable evidence to prove their stance, they can say and do as they like. This has been going on for far too long! This is why we are in the position we are in now.

Furthermore, I believe we are being played. Encouraged to get involved with the NICE guidance, for what purpose? I suspect solely to tick a NICE box - 'Patient involvement'. They are not taking us seriously, despite David Haslam and Sir Andrew Dillon's stating that they want patient voice to be heard. The Thyroid Disease NICE committee is set up with a pre-defined outcome in mind.

On another, but possibly connected, note - keep an eye on blood test ranges. I'm hearing that T3 ranges are being reduced. Why? Is this happening everywhere or only certain areas? Again, where is the justification? Another ploy to push the need for T3 out of medicine?

Another rant!! Sorry

Back to the point and post in hand. I do hope that diogenes et al will reconsider a response to question how someone, with such a closed unscientific viewpoint as the Pearce chap displays, can influence the publication of the paper which is supporting the ongoing investigations into altering thinking of current protocols. Surely this is the basis of good science and good medicine, never to accept anything as final. Never dismiss the unknown! Science and medicine changes with increasing knowledge and discoveries. Surely the BMJ should not be showing such bias?

Sir Keogh (Then NMD) at the 30th Nov 2017 NHS board meeting, states, amongst the 'glaring errors', that in medicine "it is dangerous to ever say never" Possibly the only decent point he made!

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Oh Heavens Diogenes - we do despair but only if we lose you ! we can counter these other self servers. This guy is dangerous - he personally told me that taking T3 had an effect like any druggies high and that's why we think it is good. Needless to say after recovering from speechlessness I let him know in no uncertain terms that it's effects on me for over 2 years has been nothing but miraculous. Unfortunately we have to waste time on him, because as you say he is one of our main adversaries on the NICE committee.

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Funny I've just been talking to someone on FB about their Endo saying something similar, that T3 is akin to cocaine? Having been on T3 only for 8 years I can vouch that it is anything but! It works tons better for me than T4 did - T4 was making more and more ill, but it is not having the effect of cocaine or such - not that I've ever taken it...but think the family might have noticed by now! LOL

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If a patient says to a doctor "I feel better when I take T3", some absolute dickheads respond by saying "Well, cocaine makes people feel better too, but we don't prescribe that either."

(Sometimes they say heroin instead of cocaine.)

If this was ever said to me I would want to ask why they became doctors, since they only approve of treatment that keeps patients feeling ill.

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I would be asking for all the evidence that T3 has the same effect as heroine or cocaine - from now on I'll be asking for justification of all the condescending bull spouted. It is all too easy for certain people to put themselves in a position of power where they seem to be above the need to explain themselves, instead they seem to think they have a right to play God, or rather the devil, with our health. Worse they treat us like idiots and think like lemmings we will follow them over a hill.

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Oh, yes they do! Well, the heroin anyway. Tramadol, for example, and loads of other addictive opiate painkillers (which have recently been shown to make pain worse). And, of course, morphine to make sure terminal cancer patients die more quickly. And drugs for ADHD are said to be a substitute for cocaine.

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And as I probably said elsewhere with no consideration for ability of person to use these 'opiates'. My DNA shows high risk factors with a whole list of them.

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And they don’t know a hormone from a narcotic

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omg I'm a druggie - what an idiot he is. T3 makes one difference to me. I can be awake....or I can be asleep and approaching coma. T4 is poison to me. Thank god it's not poison to everyone.

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So how could he know that T3 is like cocaine or some other drug unless he's personally taken both? I which case, he should be reported for illegal drug use. If he hasn't, he's just waffling and being unscientific.

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It’s just clap trap

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Hi is there an online link to this?

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Aswith all these debates what is significant is that us patients have no voice in our own care and the doctors are forget that their prime duty is to us and we are not happy and yes even vocal about it. If we are not happy with the established practice whatever the science says then they are not providing a good enough service.We are customers and feel we are being given a terrible service on mass, economically if endos were a private business they would collapse due to appauling reputation and percieved poor service. Sometimes I hate the NHS for proping up this kind of poor practice and horrid doctors.

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If in a healthy body the T4 converts into T3 - then surely this amazing T4 monotherapy should do the same. So is that why T3 testing is rarely carried out ? - how can they say it works well without the evidence of a T3 result ? It seems to me that the absence of routine T3 testing says it all and smacks of a cover up in their plans to deceive.

My thoughts are based on my reading of many posts here when people are constantly denied a FT3 test on the NHS - nothing scientific 😴

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I have seen claims that T3 is too variable to make a useful clinical test.

That in most of us, TSH is considerably MORE variable, is known to be that variable, and yet absolutely nothing is done by the establishment to counter that variability, shows how hollow that claim is. I believe that in a healthy or well-medicated patient, T3 levels are quite stable enough to allow inferences to be drawn. (And if we all had our tests first thing in the morning, for TSH, FT4 and FT3, then that variability within a day would be minimised.)

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I can't wait for the day we can test ourselves at any time we feel like doing so... just put your finger on the smartphone screen and hey presto, FT4 & FT3 levels appear :) Surely it can't be far off now?

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Roll on the day those incompetents become completely redundant! I find self medicating on NDT requires no doctors input whatsoever - the more they can kept us ill the more power they have to do us harm and control us.

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They should use me. I have mine tested annually and it hasn't varied by more than 1/10 decimal point. I'm clearly very skilled at faking my T3 level.

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That makes sense helvella. Likewise, overmedication of T4 can be equally as dangerous for heart etc, as overmedication with T3. Fairly certain I saw that last year, on a statement made by the BTA or BTF, but that document seems to have disappeared off the net? Wonder why? I must find/check my old laptop in the hope that I kept a copy. Of course nothing is ever mentioned about these dangers of T4 toxicity!

Again, another example of a 'sweeping statement' no doubt made by some 'promoted' Endo - who's word is unquestionable.

Funny how they can say some bloods need doing first thing in the morning -fasting etc. So not rocket science to determine the best time to test for thyroid function, and as you say minimise variations. Surely they should be doing that anyway?

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The basic problem and assumption we have to overturn is as follows. Current belief: TSH controls thyroid production. The thyroid produces T4 (and a little T3 but that's by the way and unimportant). The body takes the T4 and converts it to T3. This overwhelmingly supplies the T3 the body needs. So if you lose your thyroid entirely, by this argument, all you are doing is supplying T4 for the body to convert to T3 as usual - forget the loss of T3 produced by the thyroid - it's not important. By this simplistic argument, if you ignore the thyroid T3 then all you are doing is to mimic the natural situation with oral T4. Everyone should be capable of doing this. Now the real situation: TSH controls thyroid hormone production, as well as body T4-T3 conversion. It also controls the internal T3 production inside the thyroid, which is NOT negligible but fine controls the production of T3 overall in the body. This degree of contribution to the overall T3 production by the body will vary - some thyroids donate more T3, others less. Therefore if you lose your thyroid altogether, this important fine control is lost, no T3 coming from the dead thyroid. Therefore when you give T4 only, some people - the majority it seems - can indeed mostly make up for the lacking thyroid T3 contribution by body conversion. Others, whose thyroid T3 contriibution is larger, can't. Therefore the body's T4-T3 conversion cannot produce enough T3 for health, therefore T4/T3 combo or NDT is needed instead. Simples!

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So clearly stated - thank you

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In my experience - I am with Graves Disease and post 8 years radioactive thyroid ablation - my doctor is female , her medical interests, according to the surgery website, are thyroid and women's health - so you would think her to be a good bet wouldn't you ? Well after reading up on here I asked for a T3 blood test , no, I insisted and stayed sitting down - didn't move - I then got told I can have it if I pay for it - something I had been asking for three years but constantly fobbed off with the excuse that the " lab " didn't do it anymore, making me feel it therefore wasn't necessary or relevant to my ever decreasing circle of wellness.

If the decision has already been made that T3 is not to be prescribed -

it is only logical not to bother shouldering the burden of costs in testing for it.

The result, once a tool with which to adjust medication on, is now seen as obsolete - 'cause you aren't going to get prescribe anyway - and with a suppressed TSH - well you have no hope of getting anywhere except closer to housebound, as in my case !

Isn't it called a slam dunk - the odds are not in our favour, it is a disgrace.

Many thanks to all on here for the help, support and platform that seems to have disappeared within certain NHS specialities.

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Really hope with the help here you can improve matters - thank you for sharing :-)

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Hey there, forgot the " Punch Line ". I also insisted on a dose increase and my doctor agreed. When she then agreed to test T3 and T4 at my cost, she said she would not increase my Levothyroxine until she had the results of the blood test. Cockeyed or what ? Needless to say my T3 came in at 4 some 25% through the range and T4 came in at 20.5 % some 85% through its range. She thought my T3 was at an acceptable level. I was adamant I'd stay on the increase previously agreed viz 125 - though my instructions were reduced to 100/125 every other day. So finate, was I meant to be impressed with this revision ?

So on 125 every day I hit 5.5 T3 and 22.0 T4 - pretty much textbook - felt fantastic - so realistically, when the referral to endocrinology came through it looked like I was perfectly fine ! Needless to say I was refused T3 because to get these near perfect blood test result my TSH was now suppressed - the fact that I have Graves and drank the " Toxic Tinney " was irrelevant.

So, now, my course of action will probably be to self medicate. I am so much better than this time last year, my confidence is returning, hence this post, and other recent utterings, so yes, I can see a less stressful way forward by minding my own business. I am angry and upset for myself and all the other people in this predicament. I have worked all my life and have paid for my doctors medical training, and to be treated with disdain is not acceptable.

Rent / rage over for today - thanks for listening.

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Good that you are here and in good company. 😊 Keep us posted ..

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Yes, forgot to mention - I've gone a bit backwards now - and can't face another round of nonsense with these medical professionals and am thinking a little T3 and a little drop in T4 might balance me out, on a 1/4 ratio seems logical.

Sorry for the forgetfulness, obviously not all there yet, brain fog clouding the grey matter - personally I blame it all on the Bossa Nova !

It's just as incredulous as some excuses I've had to listen to.

Ciao - can't think of the Greek - lived there for 6 months 50 odd years ago ?????

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Adeeo or yiassas/ou !! Where did you live in Greece ?

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Of course. I was just outside Athens at Vouliagmeni teaching English.

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Hello please tell me there is going to be a reply to S Pearce on this?

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There now might well be. My colleague is angry enough to have compiled one to send to BMJ as they invite comments on reviewers' behaviour and output. I'll read it and if it suits, will send to BMJ, though I fear al I'll get is an anodyne apology - end of matter, please, they say.

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Never venture, never win!

Good luck

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Fiona Godlee took on Rory Collins over the undeclared Statin research - so there is hope. In the end he had to own up. Still in his job though - I believe.

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Did I read somewhere that BMJ encourages input from patients ? Thing is how do we get to see this rubbish review ?

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So glad to hear this diogenes. I do think you have worked too hard to have some funnel minded twit like Pearce undermine your hard work with his self satisfying pomp! And as I said earlier, not responding almost condones his remarks. He can't be let get away with it. Your explanations are worthy of consideration in the BMJ. And I do think it is the BMJ whom are equally at fault here to allow one such a review to block publication. Surely the BMJ should be unbiased and open to publishing articles to prompt open debate?

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For the record, two other reviewers, Amanda Brewster, Chair of HAPPI group whoever they are, and Dr Naykky Singh Ospina, Assistant Professor, Division of Endocrinology, University of Florida were equally ignorant about the whole submission and didn't "get" any atom of our arguments. As my colleagues Prof Hoermann & Johannes Dietrich were fairly incandescent about the whole episode they've put together this letter to BMJ on my and Toft's behalf as the UK end of the submission:

Re: BMJ.2018.044402 Manuscript Decision Analysis

entitled "Time for a Reassessment of the Treatment of Hypothyroidism"

by John E M Midgley, Anthony D Toft, Rolf Larisch, Johannes W Dietrich, and Rudolf Hoermann.

Dear Madam/Sir

In your decision note you suggested that if we have any complaints about the peer review process or the conduct of the peer reviewers, we should contact the editor who handled our paper. I appreciate that the editors of the journal take responsibility for what they send to authors.

I must admit I was shocked by the language used by one reviewer. I would expect to hear such language as "quack chatter" only in the streets or in a pub, and even there it would cause outrage. If this isn’t the new academic standard or the standard your journals is personifying itself with, I presume an apology would be appropriate.

May I also briefly remind you whom those words are directed against, among others:

John Midgley is a respected researcher and world-famous inventor of thyroid test methods, and Anthony Toft was a distinguished former president of the British Society of Endocrinology, implying it would not be acceptable to use those words at all.

As for the scientific merit of the argument itself, we want to set the record straight. At no point in this manuscript or in any other publication of ours did we express the view or imply an opinion that could be misinterpreted as "justifying use or adjustment of thyroid hormone replacement in any symptomatic patient, irrespective of serum thyroid hormone or TSH concentrations."

What we are saying is that thyroid hormones are highly individual parameters, equilibria are altered by the underlying condition such as aetiology of the thyroid disease, thyroid volume, and the responses to LT4-treatment vary depending on conversion efficiency. We do suggest the complete opposite of the reviewer’s statement that all thyroid hormones (FT3, FT4, TSH) should be tested and interpreted in context and relation to each other, not only TSH. So, this comment is a blatant attempt at discrediting our well documented views.

I do not want to go into further details about this reviewer’s scientific criticism, which we can dismiss with one single key argument, which is so very well-known and documented that it even carries various names, such as Simpson’s paradox, Robinson’s paradox, ecological fallacy, disaggregation of within-person and between-person effects in longitudinal studies. Ignorance of statistics and basic physiology does not make arguments correct.

Up to now we regarded your journal as high ranking and scientifically respected, but all of the above makes us wonder if our assumption was correct.

Yours sincerely

Rudolf Hoermann

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I hate bacronyms - especially ones that appear to pre-judge their effectiveness.

1.8 Patient and Public Involvement (PPI)

Patient and Public Involvement is a core element running through all the research undertaken by the University of Lincoln. The Healthy Ageing Patient and Public Involvement (HAPPI) group was established in July 2014 and has grown thanks to funding they received from the EMAHSN. The group has informed bids for funding, given a patient and public perspective on current research projects, reviewed documents to help make them more accessible to the general public and have been actively involved in recruitment of participants for studies. Several have had experience of caring for people with long term conditions (Amanda Brewster and Pauline Mountain) and working in the NHS (Amanda). Pauline Mountain has a MBE for her charity work including in the setting up of HOPE - Hearts Of Positive Energy, Heart Failure Support Network hopelinks.org.uk.

cahru.org.uk/2015/03/04/hap...

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EMAHSN?

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East Midlands Academic Health Science Network

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Ah thank you and who does this group consist of, do we know?

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Our core team

We have a strong team which is supported by staff from partner organisations who lead and ensure delivery of our programme activity.

Our team:

Managing Director - Mike Hannay

Director of Operations - Margaret Woolley

Commercial Director - Chris Hart

Associate Director of Communications & Engagement - Chris Taylor

Head of Programme Development and Delivery - Dara Coppel

Commercial Manager - Nicholas Brown

Project Support and Industry Liaison Officer - Aisha Ajij

Project Manager - Nick Hamilton

Project Manager - Fiona Kilpatrick

Project Manager - Tina Kundi

Project Manager - Guy Wood

Interim Communications Support - Sarah Hewitt

Digital Communications Officer - Chanice Jenkins

Operations Manager - Stephanie Chandler (on maternity leave - contact Nick Hamilton)

Assistant Operations Manager - Sam Kent

Executive Assistant - Emma Lee (on maternity leave)

Patient and Public Involvement Officer - Emma Coates

Evidence and Evaluation Specialist - Catriona Humphreys

Regional Lead: Patient Safety Collaborative - Cheryl Crocker

Patient and Public Leadership Lead - Shahnaz Aziz

Patient and Public Involvement Officer - Emma Coates

Equality and Inclusion Lead - Maxine Davis

East Midlands Lead, 5 Year Forward View - Suzanne Horobin

Director of Partner Relations and Operations (EM CLAHRC) / Head of Clinical Programmes (EMAHSN) – Karen Glover

emahsn.org.uk/about-us/our-...

Not sure how much that helps! :-)

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Me neither but thank you. Always worth keeping an eye on who is who...

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I looked up Dr Nakky Singh Ospina. A young "lecturer" in UK terms who has not done any published work in the field of thyroidolgy and the diagnosis/treatment modalities we were setting out. I can't think how such an inexperienced person was chosen as a reviewer. She has no knowledge of this at least in what she has shown in public.

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I too looked her up and came to the same conclusion.

It is also concerning that as very much the junior, she might well feel less able to disagree with other reviewers.

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Very true - They need to ensure a cross section of schools of thought - be as unbiased as possible.

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Is it worth asking the BMJ bods about this then? How are their reviewers chosen? What is the criteria to become a BMJ reviewer?

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Diogenes, in the lead piece you started with it is "contents of this paper might be misused as a ‘quack’s charter’", not 'quack's chatter'. A 'quack's charter' is also highly inappropriate. PR

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So glad to hear that a response was made. It was certainly warranted.

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I'm sure the only reason he's managed to elevate his position to where he is today is down to he fact that in his time he was probably a 'frequently very vocal' promoter of his own dubious talents... Is it any wonder why people like me come here to educate ourselves so that we can make our own grown-up decisions about our condition, how it should be treated and very frequently manage to get ourselves to a stage where we can actually function somewhere near normally?

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How do people like him get selected to NICE and how can they be removed?

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I haveasked my MPre this man.

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I have asked NICE what process exists for objecting to members of guideline committees. Awaiting their response.

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Excellent! I await to hear what they say

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I have just remmbered folks there is a new website called 'improve health care' on which we can review doctors we have seen or know. So if anyone has seen this man please put a review. I am going to see if you can review just on the basis of having someinformation about him but I think it would be disrespectful of the site if more than one of us did this. This website is really important and we need to use itto review our doctors and encourgae people who are getting a poor services to do so as well. It has government support and if used enough it will belooked at by employers before they take on doctors.

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Good to know mandyjane

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I have just remmbered folks there is a new website called 'improve health care' on which we can review doctors we have seen or know.

Can you give us a link to the site, please. I can't find it.

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Apologies I got the name wrong

iwantgreatcare.org/doctors/...

The man has good reviews. It is a good site though and exploring it the other day there were several very negative reviews about doctors we need to add it to our armoury.

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For anyone's interest still on this saga, I append the end statements in our rejected paper so that you can se the general ideas:

Serious correction of scientific evidence is not unprecedented in medicine. Notably, some cholesterol trials have undergone re-interpretation, reversing previous conclusions, following re-analysis of recovered crude data with improved statistical methods (37). New studies could be performed in the light of changes in the treatment habits, consequential shifts in symptom reporting and the complaint spectrum as well as recent developments in statistical analysis which favour greater stratification of disease aetiology and individual outcome before analysis. The emphasis should be on personalised treatment strategies, and this should be reflected by appropriate protocols and statistical instruments favouring multilevel analysis or latent class hierarchical models. Biochemical thyroid parameters, though performing an essential role in diagnosis, should not automatically prevail over patient presentation and surrogate markers for tissue T3 effects (38,39).

Even when rejecting patient preference as an objective criterion, standard LT4 therapy fails the superiority test, coming out equal with combination therapy on QoL measures (34). Following the timeless wise words of Paracelsus "Dosis solum facit venenum" and in keeping with the historic practice to adjust LT4 dose based on a metabolic marker, individual dosing regimens and personalised treatment targets have to be reconsidered (22). This is another area where current TSH based LT4 dosing guidelines fall short, as carefully conducted experiments in rodents, which cannot be performed in humans, have shown (38,39). LT4 monotherapy was unable to restore euthyroidism at the level of various tissue in the animals despite bringing TSH within its reference range (38,39).

Until the situation is clarified all approved current treatment options should remain on the table and the focus should remain on facilitating the free choice of approved treatment options rather than imposing new restrictions. The biochemically based reason for the rise in patient complaints has to be addressed, not a shift on to them of blame and burden of proof.

This invites a resume of the current state of affairs.

It appears that what we are witnessing constitutes an unprecedented historic change in the diagnostics and treatment of thyroid disease, driven by over-reliance on a single laboratory parameter TSH and supported by persuasive guidelines. This has resulted in a mass experiment in disease definition and a massive swing of the pendulum from a fear of drug-induced thyrotoxicosis to the new actuality of unresolved hypothyroidism. All of this has occurred in a relatively short period of time without any epidemiological monitoring of the situation. Evidence has become ephemeral and many recommendations lag behind the changing demographic patterns addressing issues that are no longer of high priority as the pendulum has already moved in the opposite direction. In a rapidly changing medical environment, guidelines have emerged as a novel though often over-promoted driver of unprecedented influence and change. Treatment choices no longer rest primarily on the personal interaction between patient and doctor but have become a mass commodity, based on the increasing use of guidelines not as advisory but obligatory for result interpretation and subsequent treatment. Contrary to all proclaimed efforts towards a more personalised medicine, this has become a regulated consumer mass market as with many other situations. This is of little benefit to patients who will continue to complain, and with some justification, that the medical profession is not listening, thereby abandoning one of its primary functions in the doctor-patient relationship.

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Brilliant resume!

Is there any other treatment protocol of any other widely suffered disease that is viewed from such a narrow minded and rigid perspective? I doubt it!

The way things are going robots won't just be assembling IKEA chairs.....

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