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Dr G Skinner requests views on World Forum on Thyroid treatment issues

I am posting this on behalf of Dr Skinner.

Comments welcome>

Gordon R B Skinner MD (Hons) DSc, FRCPath FRCOG
22 Alcester Road
B13 8BE
Tel/Fax 0121 449 8895

Dear Colleague,

You may be aware of the work of the World Thyroid Register (details available on the website www.worldthyroidregister.com). Its membership has increased steadily comprising registered members and affiliated groups where the Chair person of these groups has indicated their support towards our four-action strategy which has been discussed with you either in person or via correspondence.

The first step in the programme will be actioned in March of this year when a representative letter (draft to follow) will be sent to Governmental Regulatory and Educational organisations in Australia, China, Europe, UK and USA. This will address the following major issues in a World Forum.

I seek your help as a matter of urgency on the following:

A view on which organisations you feel appropriate for the respresentative letter.
The number of members in your Group whom you feel it may be possible to approach as anonymous support. This is important as the level of support will lend credence and weight to the deputation; I do not seek to overestimate this level of support but will become particularly important if and when we need to proceed to Actions 2, 3 or 4.

I would very much appreciate your input on the representative letter which could be by sent by email (action@worldthyroidregister.com). I would like our campaign to be totally transparent and in many ways the more public then perhaps the more effective. Our communications are all non-confidential and available for interested parties on a global level.

I do realise that we are all 'overworked and underpaid' but an early response would be very much appreciated as the campaign involves a considerable co-ordinated effort. I believe that our four-action strategy is the only reasonable prospect of improving the health of patients with hypothyroidism.

I urge your support.

Aye yours,

Gordon R B Skinner MD, DSc, FRCOG, FRCPath

Enclosure: Draft of Representative Letter

This is a Draft of the representative letter requesting a World Forum to address the issues of concern.

Dear Sir/Madam,
The World Thyroid Register (WTR) has presently fifty thousand registered members which includes affiliated groups in Australia, China, Europe and the United States. The objective of WTR is to redress the continuing serious shortfall in the diagnosis and management of patients with hypothyroidism; WTR has no political or other agendum.

Issues requiring resolution
i. Patients who are unequivocally hypothyroid on clinical evaluation are considered to be not hypothyroid if free thyroxine (FT4) and or thyroid stimulating hormone (TSH) levels lie within 95% reference intervals.
ii. A patient who has been diagnosed as hypothyroid may never return to optimal health because the dose level is maintained at an inadequate level or even reduced on account of thyroid chemistry without regard to clinical status.
iii. There are patients in whom there is reasonable evidence that they would benefit from a derivative preparation of thyroxine namely Liothyronine which is the active post-cursor of thyroxine or from thyroid extract preparations usually of porcine origin. Patients are often denied this therapeutic option on quasi-academic argument; it is clear from the literature and informed clinical experience that these are reasonable therapeutic options.

This preliminary note will not attempt to provide extensive evidence from the literature which is most certainly available and your Chairman (GRBS) is presently preparing a book to present cogent argument on these areas of dispute. I thought a brief summary of the present position might be useful at this juncture.

The most critical issue is that thyroid chemistry has never been validated in terms of the frequency of hypothyroidism or its usefulness in managing patients already diagnosed with this condition. The general contention that the 95% interval of thyroid hormone levels will somehow correlate with the frequency of the disease - which is then extrapolatable to an individual patient - has no evidential basis and would seem to have been loosely developed from an erstwhile laboratory test for hypothyroidism namely protein-bound iodine levels which itself was never thus validated.

The futile quest for an objective system of diagnosis is based on the misconception that symptoms - which de facto arise from the subjective perception of a patient are not objective evidence bespeaks an ongoing misunderstanding of evidence based medicine. I regret that the excellent tenet of Professor Sir William Osler that the patient will tell you the diagnosis has degenerated into a truism only if a non-validated laboratory test confirms the matter.

Thyroid chemistry was never presented as a pivotal criterion of diagnosis. Professor Grasbeck who developed TSH reference intervals in 1969 definitively counselled that diagnosis should be based on clinical features with thyroid chemistry as a possibly helpful adjunct. As the years went by and the misunderstanding of evidence based medicine gathered apace, hypothyroidism which was defined by clinical features was insidiously transmuted into a biochemical disease with catastrophic outcome on a global basis. The only justification for using laboratory chemistry to define a disease is when the disease has been defined ab initio by its chemistry for example hypercholesterolemia and thus there is a family of disease conditions which are properly defined by biochemical criteria but not hypothyroidism.

The literature abounds with evidence providing sound academic argument against the single minded adoption of thyroid chemistry and it is worrying that in the face of this overwhelming body of evidence, a number of Endocrinologists and indeed Family Practitioners - perhaps influenced by the latter - do quite sincerely believe that you can continue to exclude this diagnosis by thyroid chemistry. Indeed many patients have reported that they have been advised by Family Practitioners who agree they are hypothyroid, that it would be more than their jobs worth to prescribe thyroxine or other thyroid replacement; it is sad 'that ever this should be.2'

Critique of study by Pollock et al., (2001)
It would be improper to not flag up one study which did purport to examine the fate of hypothyroid patients treated with thyroxine who had thyroid chemistry within 95% reference intervals. Considerable reliance is placed on this study by protagonists of pivotal thyroid chemistry. In fact, the study is self contradictory in that the authors identified patients according to six typical clinical features of hypothyroidism but these patients had normal thyroid chemistry which in itself casts doubt on the security of thyroid chemistry as a pivotal criterion of hypothyroidism.

In this study, outcome was assessed by psychological profiling and the authors did not report an improvement in the patients treated with thyroxine. However, the study contained too few patients over a short assessment period with dose levels not exceeding 100 micrograms thyroxine per day which is unlikely to be an optimal dose level. The most curious feature of this study was the absence of outcome information on the symptoms which were adopted as entry criteria to the study.

It is all too easy to criticise a colleagues research but it is necessary to critically consider this study as it is commonly quoted as evidence that thyroid replacement in patients based on their clinical features will not be of benefit. On a personal basis, this diverges from my own experience during many years of practice at the Louise Lorne Clinic in Birmingham UK which is dedicated to the diagnosis and management of hypothyroidism. I respectfully offer that in this practice, many patients deemed to be not hypothyroid on the basis of thyroid chemistry have returned to optimal health by sensible and responsible thyroid replacement.

Proposed Action 1; World Thyroid Forum
The World Thyroid Register thus seeks your support to consider and redress these issues. We propose that an international forum be arranged under the auspices of - probably but not essentially - the World Thyroid Register and we would suggest the following key persons in the Forum.

Dr Gordon R B Skinner would be prepared to serve as Chairperson but welcomes suggestions of other appropriate persons.

Representatives from the following organisations
a) The General Medical Council, UK
b) The Department of Health who have already provided useful input on these issues.
c) The Royal Colleges of Physicians and General Practitioners, Society of Endocrinology and the Association of Clinical Biochemistry. This is important towards achieving a balanced view as these parties are sincere protagonists and have opined on the pivotality of thyroid chemistry in the diagnosis of hypothyroidism; an issue of particular concern is the contention which was reaffirmed by the Royal Colleges that hypothyroidism should not be diagnosed unless the TSH value is >10.0 mU/L.
d) A Professor of Endocrinology and a Consultant Endocrinologist working in the field of thyroid disease.
e) The Royal Society of Medicine who will propose an experienced physician who has no specialised experience of hypothyroidism.
f) Thyroid Support Organisations in particular Thyroid Patient Advocacy and Thyroid UK who have worked with commendable diligence during the last decade to stimulate debate on these critical issues. We will invite The British Thyroid Foundation who take a different view on the diagnosis and management of hypothyroidism but have given dedicated support over many years to patients suffering with hypothyroidism.
g) A patient from the four constituent countries of the United Kingdom who feel that they have been inadequately served in their treatment of this disease. These patients would provide an important perspective for the Forum.
h) It is suggested that equivalent Representatives from our affiliated groups in Australia, China, Europe and the USA be invited to participate in this global Forum.

We wish to achieve a sensible balance between inclusive and relevant representation. Our present thinking would be to limit the number to around 20 participants.

We thank you for taking the time to read this note and ask that you give it your reasonable consideration. We will of course be pleased to provide any further information on the work of the WTR and its objectives.

Aye yours,

Gordon RB Skinner MD, DSc, FRCPath, FRCO
1 M Pollock et al., BMJ. 2001 October 20; 323(7318): 891895
2 S.T Coleridge, The Rime of the Ancyent Marinere. 1978; Part II


Senior Member
Much interested in this ISAS - (a long overdue - delayed diagnosis of hypothyroidism) preceeding my own decline into ME I've and my brother (neurologist) always felt the beginning of it all. High dose thyroxine initially needed - but it did not stop all that followed.