This is section will provide an update on relevant news and ongoing membership information.
We have now 5, 389 registered members on the World Thyroid Register. I have approached the Chairpersons of several Thyroid associations to seek potential affiliation of their organisations to the World Thyroid Register; I emphasise that this does not involve anything other than agreement in principle to the strategy but there is no intended transfer of names to the World Thyroid Register. I will keep members up to date on developments.
I am pleased to say that two notable thyroid associations have agreed to potential affliation with the World Thyroid Register; I am grateful to these two associations for their early support for the WTR. We are slowly gaining respectability and credibility and I hope will make a difference in the not too distance future. I am approaching Thyroid Associations in the UK, Europe and the USA and will keep you informed vis a vis their position as potential affliates. I have recently made further contact with 3 major thyroid associations to establish if they will enjoin as potential affliates of the World Thyroid Register. (added January 2011)
I am afraid that I have again been reprimanded and this time by Dr. John Lowe, USA. He has kindly pointed out that there have indeed been comparitive trials between synthetic thyroid hormones and thyroid extracts and has provided a number of references which I will be studying in detail. (added December 2010)
There is therefore kind of bad news in that Armour thyroid has not presently licensure in the USA but good news in that there have been comparitive studies which - if of sufficient quality - will provide invaluable evidence towards obtaining licensure of this most useful preparation.
As some of you will know there was an excellent meeting of the Thyroid Patient Advocacy Group (TPA) which was kindly organised by the Chairperson Sheila Turner and everyone who attended agreed it was a great success. (added October 2010)
I noted in the Telegraph and the Daily Mail a small paragraph describing a patient who had been undiagnosed with hypothyroidism for 6 years. They clearly do not realise that this is the least of it and I have used this opportunity to write to these newspaper highlighting the need to increase media awareness regarding this serious shortfall in patient care in the United Kingdom. You will find this under the Letters section. (added January 2011)
We are steadily increasing the number of registered and affiliated members. We have over 2000 registered members and approximately 30000 affiliated members in the USA with 5000 affiliated members in Europe. In addition, we have opened discussions with colleagues in Shanghai and I will keep you abreast of this potentially important development. (added March 2011).
This is an interim update to advise that in the near future Armour Thyroid will not be imported into The United Kingdom which is a serious matter and I am presently investigating this in conjunction with thyroid advocacy. Erfa which is a licensed product from Canada seems to be equally efficacious in the patients attending the Louise Lorne Clinic in Birmingham in the relatively limited experience of my prescribing Erfa during the last year. (added October 2011).
The World Thyroid Register has 2940 registered members. I propose that we galvanise the first action in February 2012. I will now contact the affliate groups in the US, Europe and Asia to obtain precise numbers who will join our solicitation in February and will advise you of progress of the International dimension of our campaign.
The first Action is scheduled for March 2012, this has been added under the tab Four-Action Strategy. (added January 2012).
Thank you for the feedback and input on the representative document; it is quite clear that notwithstanding my attendance at a Scottish Grammar School there are serious grammatical shortfalls in the document which has been modified accordingly. I am presently working through every input and will incorporate these or come back to you if in the event of a difference of opinion. (added January 2012).
February 7th 2012
Please note that my last draft of the document (See under Four Action Strategy) suggested that ST Coleridge was 250 years old when he wrote the Rime of the Ancyent Marinere; this has now been corrected from 1978 to 1798.
March 20th 2012
The First Action will take place on 27th April 2012 where the WTR has convened a World Thyroid Forum and the relevant invitations (see above) have been sent out.
We will of course keep you updated on the outcome on this site.
February 11th 2013
Sandra Whyte, Marian Dyer and Lorraine Cleaver met with Parliamentary delegates from the Scottish Parliament to discuss the difficulties in the diagnosis and management of hypothyroidism. They certainly did a first class job as you can see in the video link below;
These important health issues are consonant with the three objectives of the World Thyroid Register and we of course offer our unqualified support to this excellent initiative; it would not be out of place to thank Mrs Sheila Turner for her unflagging efforts over many years and in the face of quite unwarranted opposition towards redressing this serious shortfall in patient care.
March 19th 2013
I think some people are a little mixed up and I don't blame them - between the World Thyroid Register and the Vaccine Research Trust.
The Trust is a Charity which was founded in 1982 and I have been Chairman since then and is of course a registered Charity with a Board of Trustees. The one main focus during the last five years have been the problem of hypothyroidism and for example, it is presently financing a retrospective study of the Louise Lorne Clinic where we have been helped by a medical student to research and collate the data. This study should make a major contribution to alerting awareness to the present shortfall and care of patients with hypothyroidism from uncritical reliance on thyroid chemistry.
The Trust has recently established a website www.vaccineresearchtrust.com
and now set up a Just Giving acccount www.justgiving.com
. We are very grateful to have received donations many of which have come from thyroid patients and many of whom are members of TPA and Thyroid UK. My daughter Fiona is in fact running the Half Marathon in Nice on 21st April 2013 and again many patients and others have helped to sponsor this event (www.justgiving.com/fiona-skinner1
); fortunately Fiona has not suggested that I participate in my dotage.
The WTR is nothing more than a Register and its objectives are explained on the Home page of this website. There was some initial confusion that we were seeking donations but there is no financial transactions of any sort and I hope will allay any anxieties on this matter. As previously stated, we are presently working on setting up Action 2 - you will remember Action 1 our successful World Thryoid Forum where we obtained a consensus to pursue the problems presently besetting patients with hypothyroidism.
Department of Health UK
I have been in correspondence with the DoH and have transmitted this correspondence to Mr. Stewart who is co-ordinating the work of the Scottish Parliament; I understand there will be a working party and will be pleased to make any contribution.
June 7th 2013
Just to flag up that the next TPA conference is scheduled for around October/November 2013 and I am sure that Sheila will be communicating details in the near future.
We are still preparing the ground for the WTR Second Action and now have agreed representation from all around the world including Japan and Russia.
Finally, a sincere thanks to those of you who sponsored my daughter, Fiona's run in the South of France (Nice); she had 139 donations and raised an impressive total of £4255.12
I will keep you up to date with any developments with the Vaccine Research Trust particularly as this relates to the WTR.
Gordon RB Skinner