This Petition from Sandra Whyte, Marian Dyer and Lorraine Cleaver (Scottish residents) is informed by our personal traumatic experiences of thyroid/adrenal debilitating disease. Many erroneous diagnoses were explored spanning decades which left us homeless, jobless, penniless and close to death.
The current T4-only treatment, prescribed by the General Medical Council (GMC), is inadequate for patients who do not convert T4 to the active T3. This must be rectified urgently
1. We ask for the inclusion of tests for Free T3 (FT3) and Reverse T3 (RT3) thyroid hormones, as these are the strongest indicators of cellular thyroid levels.
Free T4 must convert to FT3 for the body to have energy (active metabolism). RT3 causes energy depletion by blocking the active FT3 from getting into the cells.
2. We ask for medical professionals to acknowledge that adrenal insufficiency DOES exist and to incorporate The Adrenal Stress Index Test within NHS thyroid testing procedures.
The adrenals, which sit atop the kidney, are important for cortisol production and become exhausted trying to compensate the fatigued body for the lack of thyroid hormones. They release cortisol as a means to deal with stress in the body until they, too, become underactive ... if your adrenals are low, the thyroid hormone cannot ‘get into the cells’. Your cortisol has to be at a certain "level" to allow the thyroid hormone to do its job. If not, it will adversely affect the T4-T3 conversion. Severe ill health follows and, yet again, the endocrinologists refuse to recognise adrenal insufficiency.
3. We ask for medical professionals to take account of variances in individual bio-chemistry and tailor treatment accordingly. Treatment may consist of: T4 only; T4/T3; T3 only or natural desiccated thyroid – or whatever combination to suit the individual patient. They must also provide appropriate support for adrenal insufficiency.
4. We ask for NHS procedures to include testing of autoimmune status, minerals, enzyme, and vitamins. The ‘active B12’ (methylcobalamin) is more effective than the current injection of hydroxocobalamin. Most Scots are vitamin D deficient, and must have high level replacement.
Unexpectedly, free T3 concentration in CSF was similar (1.5 pmol/L vs.1.5 pmol/L) before and during treatment. In HT, TSH in serum correlated with TSH in CSF as did free T4 in serum and in CSF. During L-thyroxine, the correlation with TSH in serum and CSF remained. Likewise, the free T4 concentration in serum correlated with that in CSF. However, no correlation was found between T3 in serum and free T3 in CSF. It seems evident that free T4 in serum equilibrates with that in the CSF both in the HT and during L-thyroxine. Despite a two-fold increase in total serum T3, free T3 in CSF remained unchanged, which agrees with previous results in rats showing that T3 is less exchangeable between serum and CSF.
Better endocrinological service and treatment for thyroid patients
Dear Jeremy Hunt, Minister for Health
There are millions of Thyroid, Autoimmune, Graves and Hashimoto disorder sufferers here in the UK. Thousand and thousands of us are needlessly suffering severe health effects because of poor GP and endocrinological diagnosis, service and treatment. We are suffering, desperate, suicidal, dying because this needless situation continues. Please help the millions of thyroid sufferers in the UK to get better treatment, to become well, by organising an enquiry into this issue. It makes sense for us and for you.
Diane Bamford, thyroid disorder sufferer, UK.
We want to get to the bottom of why some people, such as the petitioners, believe that the service that they are getting in primary care is not always what they should expect. The petitioners have made it clear that the care falls short of the service that they would anticipate receiving. Although we have not found evidence of that, we want to find out from the petitioners and others what their evidence is.
We can then investigate that. Our clinical priorities team is trying to gather evidence of whether there
is an issue that we need to address by way of future guidance or other means. Lesley Metcalfe
will give the committee more detail on the work that we have already done.
Lesley Metcalfe (Scottish Government): We are undertaking three main streams of work at the
moment, one of which is to consult the British Thyroid Association. We have asked for its views
on the petition, and on the points that were made and so on. We have asked Health Improvement
Scotland, through its Scottish health technologies group, to provide an evidence note on all the
available published clinical evidence.
I understand from previous meetings that the petitioners do not feel that the research to date
has been particularly supportive of their position or that enough clinical trials have been undertaken to
prove their position. Again, by looking at all the published clinical evidence it may be that the
conclusion is that further research needs to be done, potentially in liaison with the chief scientist
office and so on.
We are also liaising with the diagnostic steering group at the Scottish Government to reach the
diagnostic managed clinical networks in order to deal with issues around testing, and around the
idea that the thyroid stimulating hormone test is not sufficient on its own and further testing is
required. We have tried to consider what has perhaps not been raised around the committee
table and will gather evidence from the MCNs. We are also very interested in what the petitioners
have to say; we want to take all that into account in the round when we report back to the
Alex Neil: I stress that we are taking the petition and what the petitioners are saying very seriously.
We want to get to the bottom of the problem, and to try to ensure that we go forward in a way that is
acceptable to everybody, and that people are getting the health service that they wish for.
As the article states, the guidelines work for the large majority of people, because the prescribed T4 treats deficiencies of the thyroid gland (hypothyroidism). But, T4 doesn't work for many people (Means,1954) whose symptoms are caused by deficient post-thyroid physiology. These people require the operative post-thyroid hormone, T3 (Goldberg, 1960; Baisier, 2001; Wrutniak-Cabello, 2001) or related supplements. For many, T3—an FDA-approved medicine—is a life-giving elixir. Their active, attractive lives are seemingly resurrected!
How can medical associations reject reams of scientific evidence? Pritchard states they simply ignore counterexamples. According to its great philosopher, Sir Karl Popper, science is best proved by THE LACK OF counterexamples. Medicine—alone among the sciences—IGNORES counterexamples. Or, they use the Orwellian-sounding evidence-based medicine to dismiss approximately 98% of thyroid-related research (Grozinsky-Glasberg, 2006) including all post-thyroid and most thyroid-related studies—literally hundreds!
Eric Pritchard, M.Sc. was educated in the exacting hard sciences of mathematics and engineering, was awarded 39 US patents, wrote articles for technical publications, and has authored two editorially acclaimed medical journal articles. He studied hypothyroidism-related medicine because his wife was initially a victim of the faulty guidelines. Treated successfully with a banned therapy, his wife's good health is yet another counterexample unscientifically dismissed by endocrinology.
The date has been set for the Round Table meeting at the Scottish Parliament - 1st October. We await further details of who will be attending along with us and will post as soon as we have more information. So, eight weeks to prepare!
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