What is the world thyroid register?

I attended the thyroid patient advocacy conference in Birmingham and heard Dr Skinner speak. He mentioned and I have also found on the internet The World Thyroid Register. I do not know exactly what it is. Looking at the website I think it is a sort of petition of people who want to bring attention to our problems in getting care. If this is right could one of the more experienced members give us an explanation and ask all members and their families to sign. I am hoping I have got this right and it's just that as a newby I am in the dark. Sometimes things are so big that we forget new people don't have this knowledge:)

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  • never thought about this in this way ....... if this thread is correct I for one [ and I am sure I am only one of many on this site ] would be only to happy and willing to sign up ----- but we need the info to take this forward ----- I hope that someone can give us the info to do so .....alan

  • The World Thyroid Register is here:

    worldthyroidregister.com/

    I think the site explains itself better than I can. It has been mentioned/linked-to several times here so I expect quite a number of people have signed up. However it absolutely is something that needs to be mentioned from time to time so that it is brought to the attention of those who are new or simply have not previously noticed it.

    Rod

  • I have noticed that the numbers of people who have signed has not changed since Dr. Skinner's death, probably because the website was run by Dr.S and has not been taken up by anyone else as yet. Who could we contact to find out just how many people have signed so far? I'm quite sure that it is a great deal more than the 5,346 listed on his website. I do hope the Register does not die with him as that would be yet another tragedy. We all owe it to him to keep it going.

  • The current front page of the site says this:

    We will continue The World Thyroid Register and Dr Skinner's work to address the Four-Action Strategy. Please keep encouraging friends, relatives etc to register on this site to help galvanise actions to address the appalling shortfalls in the care of patients struggling to obtain appropriate help. This wesbite will be updated on a regular basis to keep you advised of progress and required actions.

    Signed by Afshan who worked along with Dr Skinner. So I think there is every intention of keeping it going.

    If you feel the need to contact them after a suitable time, this email address is on the site:

    action@worldthyroidregister.com

    Rod

  • Thank you Rod. It would be interesting to know the numbers but it's early days yet after his death and they probably haven't got it all together. I will leave it a while and then contact via the email address.

  • Dr Skinner was a Virologist who was brought into the world of thyroid gland problems unexpectedly. After the thyroid gland blood tests were brought in and diagnosis by TSH alone people were complaining of different symptoms which puzzled the medical profession and Dr Skinner was asked to see these patients in case there was a viral cause for the conditions. Excerpt of letter to newspaper:-

    I write as a medical practitioner who has focused on the problems of hypothyroidism for some fifteen years. I was interested to read your small paragraph on a patient who had been essentially undiagnosed for five to six years. I write to indicate that this is the least of it and in my experience this is one of the most serious shortfalls in modern medical practice.

    I have come across literally thousands of patients who remain undiagnosed or do not receive an adequate level of thyroid replacement based on thyroid chemistry which has never been validated and is predicated on a ‘range’ of values (known as a 95% reference interval) notwithstanding the patient’s earnest solicitations that they do not feel well as would appear to be the case in the patient in your little piece

    This is the link:-

    worldthyroidregister.com/Le...

    The GMC then proceeded to take action against Dr Skinner several times, obviously as the Endocrinology did not like Dr S's disapproval of the modern treatment but he would not give in. Maybe even have caused his demise. Another excerpt:-

    November 25th 2011

    I am delighted to inform you that at the recent GMC hearing the panel decided to lift my conditions of registration and I am free to practice without restriction. As a gesture of good faith I will to continue to see new patients who have been referred from a medical practitioner registered within Europe.

    I very much hope that the termination of my conditions will encourage a more flexible strategy among Endocrinologists and Family Practitioners on the diagnosis of hypothyroidism. As you know I have been trying for some 15 years to establish a formal clinical trial to investigate the pivotality of thyroid chemistry in the diagnosis and manangement of this condition; and secondly a formal trial to compare the relevant efficacy of the synthetic hormone preparations and the dessicated extract preparation.

    ****

    Extracts:-

    As the dust settles - or fails to settle as it so seems - I thought it worth advising that a new issue has arisen with respect to complaints from Family Practitioners on my work. I would add that none of the Practitioners have made contact with me prior to firing off a complaint to the General Medical Council.

    The average number of complaints from Family Practitioners over a decade has been 1.5 per year. Thus if complaints are random events, then the probability of receiving four complaints at two weekly intervals is P <0.0001 or in other words less than one in 10,000 chance if complaints were randomly distributed which is the point. This suggests that some other factor has motivated this plague of complaints

    It never rains but it pours. I returned from Europe today to learn that I have been summoned to an Interim Orders Procedure at the General Medical Council at 9.30am on Wednesday 22nd February 2012 at the GMC Offices at St james's Buildings, 79 Oxford Street, Manchester, M1 6 FQ.

    This IOP has arisen following five complaints to the GMC from Family Practitioners in the recent past. This would not be the place to debate these complaints but suffice to say that I do not believe that I have placed any patient in harm from my ministrations.

    worldthyroidregister.com/Fi...

    ******

    I don't know how the World Thyroid Register will continue without Dr Skinner but other organisations had joinedtoo. (Would it appear to be a witchhunt against Dr S).

    At one of his hearings there were 2,500 letters from people made well by Dr Skinner and which the GMC had bound in nice red ledgers.

  • The World Thyroid Register is simply that: a list of names of people who have registered, indicating that they support the objectives of the World Thyroid Register, which can be found on their website:

    worldthyroidregister.com/Fo...

    n.b. I have no affiliation with the organisation: I am just a private individual who has experienced thyroid issues, so I cannot answer for any views or opinions expressed on the website. Dr Skinner (who set up the site) died on 26th November 2013 and there are no contact details on the website, although a note on the home page says it will be maintained.

  • Yes, Afshan definitely hopes to keep the register going and it is updated every so ofte.

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