An Opportunity Missed to Listen to the Concerns of Hypothyroid Patients

Most interested parties will no doubt have already heard, that those of us who wrote to the Royal College of Physicians [RCP] and others responsible for the joint statement on: The Diagnosis and Management of Primary Hypothyroidism' were promised a review on the letters, papers and similar communications which we sent to the RCP et al.

A large number of people took the trouble to write to the RCP et al and provided numerous references to support the many concerns they had with regard to the wording of the joint statement. The review has now taken place and the outcome of the review has resulted in no changes to the statement. This is both disappointing and disturbing.

Disappointing, because those of us who wrote to the RCP and the other organisations involved, believed that, our concerns regarding the treatment [or more accurately the non-treatment or under-treatment] of hypothyroidism, would at long last be acknowledged and our concerns investigated by the medical profession.

Disturbing, because although the emphasis within the statement does relate to concerns regarding inappropriate treatment or over treatment for hypothyroidism it does not also emphasise sufficiently, the catastrophic consequences for those patients who have not been diagnosed, misdiagnosed or under treated for hypothyroidism despite the fact that the RCP and others were informed of many instances of this happening by patients themselves.

Therefore concerns remain, due to a perception of [1] bias within the statement coupled with both [2] a lack of balance and [3] a lack of transparency. In addition, since the review of communication and materials has resulted in no changes to the joint statement whatsoever, then [4] the validity and [5] the credibility of this review remains questionable.

1] Perceived bias - This is because the original deliberations failed to include patient groups other than those linked with the RCP and the BTA. Thus it is perceived that only one set of ‘dogmatic’ views in this controversial area of medicine has been incorporated into the content of the joint statement as reflected in the wording of the statement.

2] Perceived lack of Balance – As at [1] above, but also because the original joint statement seemingly, did not include reference to the full spectrum of information and/or research available in relation to the treatment of hypothyroidism. A vast amount of information, has been provided to the RCP et al, by those who had concerns with regards to the content of the joint statement in support of these concerns. But, it would appear that all this information, including research and references sent to the RCP et al and subsequently reviewed, has been disregarded. This is suggested by a refusal to change the statement by the reviewers.

In addition, the paucity of references [six] used to substantiate the joint statement and review is startling given that large numbers of the population could be at risk of hypothyroidism. Such a low number of references quoted by the RCP et al, is in stark contrast to the hundreds of references supplied to the RCP et al by those concerned about the joint statement, which provide a different slant on this issue. So doesn’t this demonstrate a lack of balance in the joint statement and a lack of diversity of input into the production of the joint statement?

Furthermore, requests for participation in the review, [particularly in respect of hypothyroid patients, hypothyroid patient support groups, doctors and researchers not included previously] were not even acknowledged let alone acted upon. So, who actually carried out this review? Why weren’t hypothyroid patients who could come to harm as a result of the joint statement invited to participate? Why weren’t the hypothyroid patient support groups and others who speak out for such patients, invited to participate?

3] Perceived lack of Transparency - Despite requests to the RCP et al, for the authors of the joint statement to be named, this information has not been forthcoming and those involved with the joint statement and the individuals who produced the statement, remain anonymous. This is odd given that, for example, the names and designation of every member of the development group for the BTA/ACB/BTF, 2006 UK Guidelines, mentioned in the joint statement are freely available to all via the Internet. Why this cloak of anonymity for the authors of the joint statement? Are the same people both authors and reviewers of the joint statement?  

Furthermore, the review apparently took place behind closed doors and certainly it seems that the requests to involve other interested parties [excluded from any deliberations by the RCP and the other organisations involved first time round] in order that all viewpoints could be discussed was not taken into account. Why not? This is another reason why there are major concerns regarding transparency.

4] Validity – All the above seems to demonstrate a total lack of regard for the views of those hypothyroid patients, who could now come to harm as a result of the RCP et al joint statement which has apparently now been designated as a “position statement or guidance (but not a guideline).”

So we request that the RCP et al, define the exact purpose of this document, which has been called different things at different times? Furthermore, as already stated the RCP et al were sent a few hundred references in relation to this subject from those concerned about the content of the joint statement, so the reviewers would and could not be ignorant of the existence of this mass of information. All Physicians, including the ‘anonymous ones’ who wrote the joint statement have a duty of care to all patients, [this includes keeping up to date with new research and information], otherwise lives could be put at risk.

5] Credibility - The way that the review was conducted, appears contrary to the standards that the Royal College of Physicians should be expected to uphold, The President, Professor Gilmore has in the past expressed the sentiment that Physicians cannot take for granted the trust patients afford to physicians nor assume that physicians know best the care that patients want. That being the case why are hypothyroid patients not being listened to? – we urgently need to know the answer to this question.