Thyroid UK
With approximately 12 million people affected by disability (about 20% of the UK's population) who are in turn supported by about 6 million carers, it is important that as much as possible Thyroid UK is a charitable company campaigning for, and providing information and support to those with thyroid or related disorders.
Thyroid UK works primarily within the United Kingdom although we have more and more people from outside the UK needing our help. We were formed in 1998 and, as the organisation has grown, our legal entity has changed to take this into account. In 2007 we became a company limited by guarantee and in 2008 we became a Registered Charity.
The provision of quality information for people with both diagnosed and undiagnosed thyroid disorders is the primary concern of Thyroid UK, and we work effectively in this field through dialogue with NHS departments, networking with other voluntary organisations, and providing services direct to patients.
In just under nine years, Thyroid UK has been contacted by over 14,000 people seeking advice and support, and the number of members/subscribers has increased significantly from its beginnings. This has resulted in a corresponding and substantial growth in the range of services provided despite the limitations imposed by relying on a mainly voluntary workforce. We have kept abreast of developments in technology and our website is now the main focus of service provision, taking nearly 4 million hits in 2008.
Our Chair/Chief Executive Officer, Lyn Mynott, is respected by doctors and patients alike, and she has built a solid foundation on which Thyroid UK is now able to go forward with exciting and substantial plans for the future. Lyn is supported by an experienced Board of Trustees and the organisation is fortunate to have six medical advisers, leaders in their field, upon whom rests the responsibility for medical issues.
Thyroid UK has now reached a time when we must adopt new ways of working in order to capitalise on our success to date. We are the only thyroid-related organisation in the United Kingdom to be accepted as a pilot for the Department of Heath Information Accreditation Scheme.
The Accreditation Scheme will combat substantial variation in the quality of health and social care information available and will provide a way for the public and professionals to know that the information they are using is reliable.
Aims of Thyroid UK
The Charity's Objects are the relief of sickness of persons suffering from thyroid disease and related areas, for the benefit of the public, particularly but not exclusively by:
(a) providing information and support to sufferers of thyroid disease
(b)promoting public awareness in regard to thyroid disorders
(c) acting as a resource centre and disseminating information
(d) encouraging scientific research for the education, alleviation, care, treatment and cure of thyroid disease
(e) raising funds needed to achieve the stated objectives.
A message from Lyn Mynott - the current Chair and Chief Executive
I have had many telephone calls and letters from people who are now feeling better, because they have taken our advice.
I am campaigning to help people who are having symptoms of thyroid disease, but whose blood tests come back "normal" or "borderline" and also to help those people who are on levothyroxine for their underactivity and who are still ill.
I appeared on Watchdog Healthcheck on 15th March 1999 regarding this and since then I've had thousands of e-mails and letters, all telling me the same story. It's about time the GP's helped us a bit more!
I am now trying to make doctors understand that even though the blood test results come back "normal", one person's normal could be at the bottom of the range, and another person's could be at the top of the range. How can the doctors know which person is which? How do they know that a particular person's blood test is at the correct point – it could have gone up or down within the range. Five points within the range could make a lot of difference to how one person feels.
Some people who are on levothyroxine could have a conversion problem and need to be on either T3 or natural thyroid hormone. They will not become well on levothyroxine alone as this is only one of the hormones the thyroid produces.
Please let me know how you get on - I am trying to make a database of those of us who were able to start on levothyroxine or natural thyroid hormone and got better so that I can show the statistics to those in high places!!
Also, once you find a sympathetic doctor who agreed to put you on a trial of levothyroxine or natural thyroid hormone, please give me his name and address - I want to make a database of doctors so that we can help others in your area.