Bias and the British Thyroid Association Executive Committee statement on the Management of primary hypothyroidism

[holyshedballs]

The endorsements of the British Thyroid Foundation (BTF) and the Society for Endocrinology (SfE) for the should be set aside because of bias and/or the perception of bias.

The test for apparent bias was settled in Porter v Magill [2002] 2 AC 357 at 103 per Lord Hope:

“whether the fair minded and informed observer, having considered the facts, would conclude that there was a real possibility that the tribunal was biased”

The facts are that there is such a close association between the BTA and the BTF and with the Society for Endocrinology.

The individuals who have put their names to the 2015 version of the statement are:

Dr. Onyebuchi Okosieme, Medicine, Prince Charles Hospital, Merthyr Tydfil,

Assistant Secretary of BTA

Dr. Jackie Gilbert PhD, Endocrinology, King’s College Hospital, London,

Secretary/Treasurer of BTA

Member of SfE,

Dr. Prakash Abraham, Endocrinology, Aberdeen Royal Infirmary, Aberdeen,

Member of the executive committee of the British Thyroid Association between 2003-2009 serving 2 years as the assistant secretary and 3 years as the secretary of the Association.

Member ofProgramme Organising Committee of the UK SfE for 3 years until 2009.

Dr. Kristien Boelaert PhD, Division of Medical Sciences, University of Birmingham, Birmingham, Member of Clinical Committee of Society for Endocrinology

Professor Colin Dayan, Centre for Endocrine and Diabetes Sciences, Cardiff University, Cardiff, Committee of BTA

Dr. Mark Gurnell, Endocrinology, Institute of Metabolic Science, Addenbrooke’s Hospital, Cambridge,

Committee of Society for Endocrinology

Professor Graham Leese, Medical Research Institute, University of Dundee, Dundee

Committee of BTA

Professor Christopher McCabe, College of Medical and Dental Sciences, University of Birmingham, Birmingham,

Member of Council, Director and Trustee, Chair of the Science Committee, ex officio Committee member, ex officio member of Corporate Liaison Committee, member of Nominations Committee for the Society for Endocrinology

Received 2 research awards from BTF

Dr. Petros Perros, Endocrinology, Royal Victoria Infirmary, Newcastle,

Committee of BTA, Member of Clinical Committee of Society for Endocrinology, Trustee, Medical Advisor and Medical Editor for BTF News at British Thyroid Foundation

Quote: Some decades ago, we thought that we had solved the problem of thyroid hormone replacement. Yet, some patients remain dissatisfied, seek alternatives, and have recently launched a war against “conventional” endocrinologists. Unfortunately this is exacerbated by self-appointed experts from the dark alleys of alternative medicine, who exploit human suffering and desperation. However, on the bright side of things, this controversy has raised some valid research questions that are answerable by scientific investigation, and the new knowledge gained from it will help resolve some of these issues.

endocrinologyblog.org/2018/...

Dr. Vicki Smith, College of Medical and Dental Sciences, University of Birmingham,Birmingham, Committee of BTA

Professor Graham Williams, Molecular Endocrinology Group, Department of Medicine,Imperial College London, London,

Formerly Treasurer now President of Society of Endocrinology

Dr. Mark Vanderpump, Endocrinology, Royal Free London NHS Foundation Trust, London, UK

Former President now Committee of BTA

Editorial Board of BTF, Ex officio member of trustees of BTF

Former Finance Committee of the Society for Endocrinology

Further, the BTF regularly has a stand at SfE Meetings

The BTA has joint membership with the BTF See british-thyroid-association...

On knowing of the close association between the BTA the BTF and the SoE, a fair minded person would come to the conclusion that there was a real possibility that the endorsement by the BTF and SoE of the BTA Executive Committee on Management of primary hypothyroidism is biased.

Therefore their endorsements should be set aside.

What is fairness?

Errington v the Minister of Health [1935] 1 KB 249 CA said that where judicial functions, or quasi-judicial functions, have to be exercised by a Court or by a Board, or any body of persons, it is necessary and essential… that they must always give a fair opportunity to those who are parties in the controversy to correct or to contradict any relevant statement prejudicial to their view. In other words those principles of British justice proceed upon the basis that both sides have a right to be heard.

Lord Hope in Helow [2008] 1 WLR 2416 at [1-3]:

“The observer who is fair-minded is the sort of person who always reserves judgment on every point until she has seen and fully understood both sides of the argument. She is not unduly sensitive or suspicious…. Her approach must not be confused with that of the person who has brought the complaint…

Then there is the attribute that the observer is “informed”. It makes the point that, before she takes a balanced approach to any information she is given, she will take the trouble to inform herself on all matters that are relevant. She is the sort of person who takes the trouble to read the text of an article as well as the headlines. She is able to put whatever she has read or seen into its overall social, political or geographical context. She is fair-minded, so she will appreciate that the context forms an important part of the material which she must consider before passing judgment.”

Both the statement and the endorsements have not taken into account the alternative respectable body of medical opinion and the need to inform patients of the duty to give full information to patients.

[shaws]

I would like to know if these 'professionals' only take notice of the TSH result and adjust hormones to 'fit' results into a particular rangeand also ignoring testing FT4 and FT3.

[holyshedballs in reply to shaws]

It seems totally illogical to me to adjust hormones to make TSH fit into it's Reference Range when T3 is the active hormone. If any hormone is monitored for adjustment, it seems logical to me that it is T3 that is monitored. But as we all know, T3 can be without the reference range and not be toxic.

My main point is that the BTA and the BTF are basically the same organisation and the SfE is complicit in trying to maintain the status quo, so they are not a reliable sources for endorsement as PrescQIPP and NICE seem to think.

[diogenes Remembering]

Knowledge moves on at an inceasingly rapid pace! One of the bitter pills groups like this have to swallow is that a considerable number of the socalled "dark practitioners" have on the whole, been right all along. I don't mean totally right, or that the explanations they give have been totally sound, but that the basic outcome of what they propose has been found to be useful practically. It is truly ironical that socalled "unsound" people have been closer to the truth than the "sound". And it is this necessary admission that is sticking in the establishment's throats and will continue to do so. Our scientific excursion has, without any prior prejudice, led to a general physiological support of the empirical decisions and ideas of the socalled mavericks. Because of this, it will be the harder for it to be accepted officially, because of the size of the humble pie.

[shaws in reply to diogenes]

I know of a couple of these names and one name in particular is well-known amongst the forum for their ideas and quotes which we thoroughly disagree with.

I was phoned at home and told to stop T3 immediately (it had been added to T4) - I of course refused as I had had an enormous change in my body as it was the first time in so long that I felt my body was filled with oxygen. I was then told to reduce T4. It was then I thought, I am going it alone with the help of TUK and have since recovered my health. I also consulted with Dr Peatfield and was also fortunate to see Dr Skinner as well.

Dr Skinner had a one-man crusade against how we were diagnosed/treated and not provided with options if so required. He organised a Conference to discuss the Parlous State of patients.He also saved Lorraine Cleaver's life by prescribing NDT.

They didn't seem to have any regard for Dr S and not one of the Endocrinologists accepted his invite - the last withdrew his name the evening before the Conference. I believe it was because he was a Virologist and one by one they all refused, the last the night before the Conference. Dr S was so disappointed but that's what we are up against, people prescribing for the sick and not believing that we remain unwell or even far worse. Only family members know exactly how unwell the person is/has been. Doctors seem not to look further than a blood test and patient seems to remain invisible despite informing them of their crippling symptoms and hoping against hope a solution can be found.

[holyshedballs in reply to diogenes]

Petros Perros displays a shocking disregard for Good Medical Practice. What he calls "self-appointed experts from the dark alleys of alternative medicine" have been recognised as a responsible body of medical opinion by the General Medical Council - mainly as a result Dr Gordon Skinner's hard work at the GMC Panels. Petros Perros should have knowledge of it and explain it to patients giving the patient the choice of options. He doesn't do that in that quote from his Society for Endocrinology blog.

[helvella]

Some decades ago, we thought that we had solved the problem of thyroid hormone replacement.

You were wrong then. On what basis should we trust you to be right now - or in the future?

Yet, some patients remain dissatisfied, seek alternatives, and have recently launched a war against “conventional” endocrinologists.

Just what is a patient, who remains dissatisfied, supposed to do? Leave it in your hands when you have already admitted you were wrong and that research is required?

This feels like “conventional” endocrinologists launching a war on patients.

Unfortunately this is exacerbated by self-appointed experts from the dark alleys of alternative medicine, who exploit human suffering and desperation.

Response A:

Fortunately there are light highways of alternative medicine which do not exploit human suffering and desperation. I put forward that much of support here on Thyroid UK forum actually could be regarded as alternative (to the conventional endocrinologists). Much of what is suggested is based on the best known scientific and medical research. Obvious examples include looking at iron, magnesium, vitamin D, vitamin B12 and folate.

Response B:

Show me an area of medicine not being exploited by self-appointed experts.

However, on the bright side of things, this controversy has raised some valid research questions that are answerable by scientific investigation, and the new knowledge gained from it will help resolve some of these issues.

You do not convince me that you have even read much of the research that has already been done. Still less do I believe you know what research is required, how to do it, or have the ability to get it done.

Let us take one trivial example - when to take our levothyroxine. In 2007 it was suggested that bed-time dosing might have benefits, at least for some people, yet 11 years later the Patient Information Leaflets still say before breakfast is usual. Few doctors (consultants or GPs) suggest otherwise.

ncbi.nlm.nih.gov/pubmed/172...

Just how many more years will it take for this to actually affect patient treatment and advice?

[holyshedballs in reply to helvella]

The "war" against Endos is not a war. It is empowered patients standing up against bullies and the negligent who are a danger to patients. They don't like this and lash out.

Weetman was the worst I have come across. during the debate with Colin Dayan, he displayed what I thought was terrible arrogance. he did not appear to have the patient as his first concern at all. he thought that Endos shouldn't prescribe T3 because, amongst other reasons, he didn't think that the patient would take it correctly and the pills had too large a dose. He didn't consider that patients use pill cutters.

[shaws in reply to holyshedballs]

His comments are well-known and ignored by us, the poor, suffering patients.

I think some become so conceited that they believe what they state is 'the whole truth and nothing but the truth' but we 'the sufferers' know he and others of the same ilk, shouldn't be advising patients who have hypothyroidism and not recovering on levo and should resign.

[posthinking01 in reply to holyshedballs]

About 10 years ago I went to see a barrister about taking the 'field of endo' to court regarding the appalling treatment of thyroid patients - at that time I had gone from 8.5 stones to 16 stones rapidly had over 100 symptoms that made me lose my job because I couldn't work any longer due to health issues - my blood tests were showing that I was within range and no-one would give me thyroid hormone in those days even though I was virtually dying with myxedema. The barrister said he it wasn't possible to take on a case for a group of people but had to be me personally - but I was too ill at the time for the stress - and it wasn't about me anyway but the thousands of other patients who were suffering the same fate - but I still feel someone who has a good case and is willing to go down this road which shouldn't cost anything - and if it does I am sure we can crowd fund the costs - he said if we set a precedent case things would have to change. Anyone interested ?

[holyshedballs in reply to posthinking01]

I personally think that the time is ripe for such an action. The case law is with this side of the matter, the GMC guidance is with this side of the matter, the logic is on this side of the matter and the scientific evidence is on this side of the matter.

The Montgomery v Lanarkshire Health Board 2015 case has virtually done away with the profession regulating itself

The GMC has a Barrister's Opinion that treating patients with thyroxine when they are within the reference range is supported by a respectable body of medical opinion.

However, in my view it would have to be under the auspices of medical negligence or by way of Judicial Review.

In order for a negligence case to commence a patient has to take the action themselves. That patient has to prove that the doctor owed him a duty of care, that duty was breached and importantly, harm was caused by that breach.

In medical negligence cases, the defence was that their practice was supported by a body of medical opinion; i.e. the BTA statement. The Montgomery case has to a large extent demolished that defence with respect to obtaining consent and put the decision of whether a doctor acted negligently in the minds of the court not a professional body.

Judicial Review is about ensuring public bodies act lawfully and rationally. I think there is plenty of evidence to show that the NHS, CCG's and hospital trusts do not act rationally when it comes to thyroid treatment.

All we need is a patient who has

the strength of character,

the energy,

access to a sufficiently weighty body of evidence,

access to credible expert witnesses and

the money

to commence an action.

Taking court action by negligence or JR takes a lot of energy and commitment and is not to be taken lightheartedly. Think of what happened to Dr Skinner with his FTP Panel hearings. Nevertheless, Ms Montgomery did just that and won.

[posthinking01 in reply to holyshedballs]

I certainly have the case history to do it but not the health as I am too poorly now because of their negligence - Lupus/Adrenal Insufficienty/Hashis/plus plus plus - all caused by the lack of thyroid hormone at the right time - my whole body virtually collapsed in on itself and damaged the adrenals and other hormones. Still not getting any help from endo and have to pay for treatment virtually.

[JMo1 in reply to posthinking01]

I am still thinking of taking my daughter’s case to a no win no fee lawyer who have said they willl consider it. She was refused an appointment by an NHS Endo despite being symptomatic on T4 and then my GP refused to prescribe T3 which was prescribed by a private Endo. I complained and eventually the Medical Director of NHS Lanarkshire upheld my complaint and strongly recommended my GP prescribe based on sufficient objective evidence. My GP now prescribes the T3 on the agreement that I continue to pay privately to have it monitored. The Ombudsman recently upheld my complaint that she should have been seen by the NHS Endo or at least given additional advice by him via the GP. I have just received a letter of apology however it still leaves us paying for private monitoring of the T3 which is now being prescribed by the NHS. Seems absurd. I am now deciding whether to ask the NHS board for a 2nd opinion or go straight to the legal route? Either way my daughter has just achieved 3 Higher As and an Advanced Higher B in her exams and is due to start Glasgow Uni in September. I am so proud of her and so grateful to Thyroid UK and this online community. Without you all I would never have known to challenge her poor treatment. Her life was disintegrating and now she is thriving! Thank you from the bottom of my heart!!

[holyshedballs in reply to JMo1]

In my view, if the Medical Director recommends that the doctor prescribes T3 and the Ombudsman upheld you complaint that your daughter should have been seen by the NHS Endo it logically follows that the NHS doctor or Endo should carry out the monitoring.

I would continue on the complaint route if I was in the same position, which I am. (Private Endo recommends T4 and NDT to NHS Endo/GP for me).

Could you share your story as a post on this site to help any other members who are considering the complaint route? It shows how a tenacious person CAN achieve proper treatment, but after a struggle though.

Having to go to the Medical Director and the Ombudsman, would you consider referring the errant doctors to the GMC?

[JMo1 in reply to holyshedballs]

The problem I think will be that the NHS endo will still assess that she doesn’t require the T3 because her TSH and T4 was within normal range (he said he wouldn’t prescribe T3 to her in those circumstances, in his response to my complaint). The Ombudsman’s report stated his comments were reasonable, although they still found that he should have seen her. It was a bit wishy washy. Saying that, I can’t challenge the treatment or monitoring decision until he actually sees her. Ideally I would request an Endo who would be open to T3 if she is offered a consultation. Thanks for your thoughts, I think responding to the NHS Board may well be the way forward.

I would indeed also contact the GMC if it would be useful. What would their role and potential outcome be? I am keen to do anything to raise awareness of the dreadful quality of care people with thyroid disorders receive. It would be fabulous to write a post outlining a positive outcome for both prescribing T3 and monitoring it! I live in hope😄

[holyshedballs in reply to JMo1]

I don't know enough about your case to give to give you any further advice that you can rely on, and you appear to have achieved a lot already,

BUT

I would start off by noting that your daughter was still symptomatic on T4 and from what you say improved on T3. To me, that is evidence enough, to maintain the T3 prescription. I would produce the BTA response to NHS England (I know you are in Lanarkshire, the B stands for British) regarding maintaining T3 therapy for those who need it.

british-thyroid-association...

and the direction from the Medical Director for the T3 therapy

But you face the hurdle of the "Tyranny of the Reference Range" so you need to refer again to the clinical improvement, the direction and the BTA response.

I would then produce the GMC Code of Practice Consent: patients and doctors making decisions together. gmc-uk.org/ethical-guidance...

The point about this Code of Practice is that it outlines the ideal consultation at paragraph 5. My view is that if the Endo doesn't follow this procedure, that can be grounds for complaint and a case for negligence - provided the evidence is strong enough. From the information you have given, it seems as if the Endo has made his mind up already, so i would take steps to records the consultation.

This could be by making notes of the consultation as soon as you can (contemporaneously) or by taking someone with you who makes notes, or (as a very last resort as this can be very off putting for doctor and patient) by recording the consultation. if you do this please ensure that all in the room know that the consultation is being recorded.

Points bring out during the consultation,

-your daughters history, esp. the improvement on T3, the direction from the Medical Director

-your/your daughters knowledge

-the fact that the risks of AF and OP are small

- VitD3/K2 replacement therapy and heart monitoring (looking for abnormal T waves) can help to reduce those risks even further

- monitoring can also include clinical signs and symptoms

-your daughter has weighed up the benefits of T3 therapy against the risks and burdens of T3 therapy

-she has considered all the non-clinical issues (e.g. need to maintain T3 for education)

- any other matter you consider relevant

- your daughter wishes to remain on T3 therapy

- it is illogical for the NHS to prescribe T3 but then not to monitor it. The Bolitho case says that doctors must act logically.

If the Endo says that he doesn't agree, he doesn't have to provide that treatment but the evidence is against him. I would complain about his conclusion not being logical.

You have already complained to the NHS and the Ombudsman, so my view is that if I was in your position, I would complain again and if necessary refer the Endo to the GMC for

- serious or repeated mistakes in patient care

- failure to respond reasonably to patient needs (including referring for further investigations where necessary)

You many need some form of legal help for the Complaints. The GMC take their own cases to the MPTS if a legal assessor finds that there is sufficient evidence to of impairment to practice warrant a referral, so provide plenty of evidence i.e. failure to follow GMP Consent and the harm done or likely to be done to your daughter. You may be called as a witness.

I cant say any more but good luck and keep us posted with your progress.

[JMo1 in reply to holyshedballs]

Thank you so much! That is priceless information. It really outlines a robust plan of action. I will definitely keep you posted! Thank again

[holyshedballs in reply to holyshedballs]

i was thinking about your ombudsman case. These are normally published with the complainant's details being redacted. Can you share your Ombudsman case or point us to it on the web? It would be interesting to see what the Ombudsman made of your case and how it could be applied to other members of the forum.

[JMo1 in reply to holyshedballs]

Yes, I would be happy to share the case reference or report. I am on holiday at the moment so don’t have any of the paperwork. I’m not sure what the best way to share it would be? I will contact Thyroid UK once back and ask advice. I could post it but am thinking it might not be easy to locate ( I can’t even find my own replies to posts) 😃

[holyshedballs in reply to JMo1]

If you could that would be great. It would be better if we all could share your success with the Ombudsman, but if necessary you could message me.

[JMo1 in reply to holyshedballs]

Yes, I agree. I’ve learnt so much from this forum and am still learming (your advice was greatly appreciated!). I will let you know what Thyroid UK say.

[Charlie1606 in reply to posthinking01]

Yes lets do it

[diogenes Remembering in reply to helvella]

I've come to the conclusion that there is a vast intellectual gulf between the "pragmatic" practitioners' (run-of-the-mill medics which includes virtually all of them) understanding of the physiological basis behind their decision making, and the understanding of the physiologists who research the basic details of body thyroid function. The former simply do not understand the implications of the work of the latter and seem to be incapable of making the intellectual leap out of their comfort zone to consider other and more valid and productive ways of looking at the problem. There are givens used by the medics to justify their stance, which are not negotiable. These include randomised clinical trials as the gold standard of evidence. This is ironic, in that it is these studies in particular which can be seen to be as a class, fatally flawed. Until the thyroid medical profession (and indeed the profession as a whole) admis this, we shan't progress far.

[helvella in reply to diogenes]

Could not possibly agree more.

When I read my first few research papers, I could not marry up what what I was reading with all the how-we-treat information.

[marigold22]

I have come across one of the "Birmingham Crowd", named in your post. I am currently being seen by that 'top endo's' "team"; I was told by the minion endo that that particular 'top endo' would not prescribe T3; however I did manage to convince the 'minion' to continue prescribing T3 for me.

Mine is a complicated story, but I've had two separate periods of going to the Birmingham Endo department.

In 2006, I actually moved to within walking distance of that big Birmingham teaching/research hospital (affiliated to the university) to find an answer to my chronic illness. The first professor of endocrinology I saw there insisted I came off the T3 which had been prescribed by Dr P. and that I reverted back onto T4. This was all despite my protests and explanation that I knew my body was unable to convert T4 into T3 due to polymorphism; that I had been extremely ill for 14 years whilst taking only T4. I have since paid for a DIO2 private gene test and as I totally expected, it returned as heterozygous (dodgy thyroid gene from one parent). So, basically Birmingham endocrinology nearly killed me.

So, in a nutshell, one of those names is definitely anti T3.

[holyshedballs in reply to marigold22]

We as patients have to realise that WE are in charge of our bodies and stand up to these Endos. Two of my doctors have been really surprised that I challenge what they say. The law and the GMC help us to do that, we have to tell Endos what the law and the GMC says they have to do when they see us. the more of who do it by reference to GMP and the law, the more the Endos will (slowly) change, in my view.

[shaws in reply to marigold22]

Dr Skinner had his offices/staff in Birmigham and people travelled to him from all over the country. I was one, my daughter and sister also and he also had a clinic in Glasgow where Lorraine Cleaver saw him - he prescribed NDT and she is another 'woman on the warpath'.

To be put on medication - which is actually replacement hormones on our part - and to find we are actuually worse comes as a huge shock to the patient. Not to doctors or endocrinologists who treat bits of paper and results whilst ignoring the poor patient who is desperate for a solution. It certainly isn't coming from those 'supposed to be experts' who keep patients unwell and dismiss them - not forgetting that we have contributed towards their education and qualifications. Another name also 'jumped' out at me.

[Zephyrbear]

As I said in a previous response to you, it seems that there are now moves afoot to get unsuspecting patients to reveal their alternative sources of T3. I was asked on Thursday by, what he described himself as, the 'dedicated T3 specialist' in his endocrinologist department, to write him a letter marked private & confidential (so nobody else would open it) containing a list of my alternative sources of T3... It turns out that j–bee was also asked somewhere else for exactly the same information by her endo on the same day! Just exactly what they would do with this information is not clear, but you can bet your bottom dollar that it won't be in the interest of any patient!

[holyshedballs in reply to Zephyrbear]

I agree that we should not divulge the sources of T3.

Doctors should be trustworthy.

I would write him a letter asking him why he wants know.

[nightingale-56 in reply to Zephyrbear]

I was at Broomfield Hospital,Mid-Essex Health Trust.

[pffft2017]

The core problem is that it all boils down to sexism within the medical profession. If thyroidism affected men more than women these doctors would not be so dismissive. I read a very informative article in the Mail on how women are treated as hysterical or neurotic when presenting symptoms to their mostly male GPs. The equality angle should be explored.

[Hidden in reply to pffft2017]

That surprises me. Where I live the majority of doctors are women, and the majority of medical students, I believe, are women so I guess the dominance of women medics will continue.

My own thought is that most thyroid symptoms are at least a little vague and it makes it tricky to pin down, sometimes. I know I myself put the symptoms down to other things. I'm tired, well of course I'm tired - I have small children; I'm putting on weight, either ditto small children comment or going into menopause; I'm cold, well it's winter... and so on. I didn't even twig when I was charting my fertility and had to make a whole new chart with a lower temperature range because my temperatures fell off the bottom of the regular chart!

[pffft2017 in reply to Hidden]

Unfortunately women can be misogynistic too. The amount of predominately female patients on this site that have been repeatedly fobbed off, refused blood tests, refused T3, told it's "all in their mind" although it does happen to male patients too, myself included. Thinking back my mother had severe symptoms of hypothyroidism which wasn't picked up by her male GP. Over the years she developed mental health issues, senile dementia was the diagnosis ( at 56 ) then paranoid schizophrenia, the go-to diagnosis for most shrinks, diabetes and eventually died of a stroke looking 30 years older than her 58 years.

Re; symptoms, you have a point. Since being diagnosed I tend to heap, perhaps, unrelated symptoms onto the hypothyroidism, however there are some peculiar symptoms that are related to the thyroidism, such as tinnitus and acid reflux which I dd not connect until joining this forum.