All UK And Multi-National Thyroid Patients And Organizations, Now Hear This! UPDATE
The below update is from Lolly via Sheila. PLEASE REVIEW AND VIRALLY SYNDICATE TO YOUR FRIENDS. Send this link to 5 friends and ask them to send it to 5 more friends. The only way we truly get more people involved is by arming them with information and a call to action.
one thing that we MUST stress to our MP is that the terrible, unnecessary suffering being caused to over 250,000 people who have the symptoms of hypothyroidism. This is NOT a medical problem. It is a POLITICAL and/or LEGAL problem. It is not a medical problem, because there are patient counterexamples to the dictates that medicine has made. There are dictates that show the treatment of these patients by medicine is
For anybody who writes to their MP, you should tell them that neither Thyroid Patient Advocacy (TPA) ( www.tpa-uk.org.uk ) or any other thyroid support organisation in the UK, is able to progress in our campaigns to get a better diagnostic and treatment protocol for those suffering the symptoms of hypothyroidism. This is because of the intransigent opposition from the Royal College of Physicians (London) and the British Thyroid Association et al., to ANY plea that they should change their policy statements in their guidance on the diagnosis and management of primary hypothyroidism, in the face of over-whelming scientific evidence adduced to support this demand for change. Some of this scientific evidence has been available for over 40 years, yet the RCP, BTA et al choose to ignore it.
In short, the RCP (London), as a setter of medical standards to improve medical practice through self-regulation, appears to be “above the law” and a ‘closed shop’. Their standards and quality are seen as implicit rather than explicit, with government and society trusting them to protect the public, and granting the profession considerable autonomy in the process. Because the government has done nothing and seemingly refuses to investigate this matter further, the abuse of over a quarter of a million sufferers continues. This is appalling, and the Government should now press for a Public Enquiry. In TPA’s efforts, the following critical questions are being asked but remain unanswered – our Government should demand that these answers are given without delay:
- WHY do the GMC, the RCP, the BTA et al. deliberately choose to ignore the scientific evidence that has
- been available for over 40 years ?
- WHY are medical associations ignoring the 13% failure rate of T4-only therapy for the past 50 years?
- Why are patient’s complaints dismissed?
- WHY has there been no correction to the RCP statement when there are patients who are counterexamples to the validity of T4-only therapy?
- WHY is the confusion of two definitions for ‘hypothyroidism’ allowed to continue?
- WHY are guideline authorship and concise guidance to good practice protocols ignored?
- WHY are individual symptoms of hypothyroidism stated to be “non-specific” when Baisier found groups of these symptoms may be quite specific?
- WHAT further investigations for non-thyroidal causes are recommended as relevant to the symptoms of hypothyroidism when pituitary and thyroid GLAND function tests are biochemically normal – Levels of fT3, rT3 and adrenal levels?
- WHY are the studies by Das (2007) and Lewis (2008), which found that patients could be successfully treated with thyroid extract being ignored?
- WHY is medicine ignoring false negative test results?
- WHY do doctors refuse to explain and/or justify their decisions, thereby withholding information necessary for valid consent to treatment?
- WHY does the NHS refuse to take steps to protect human rights when sufferers are put at risk through a disregard of the demand that patients should be treated with fairness, respect, equality, dignity and autonomy?
- WHY are laboratory discrepancies in serum testing being ignored?
Written by Lolly, a Dear Thyroid Community Member:
“I feel strongly about everything that was said in Shelia’s letter to her MP. I will be writing my own using this one as a template and posting it off to my local MP. After my own experience with the medical profession in regards to thyroid tests and subsequent treatment/T4 only medication, this is just not working for me.
And, I hope that all our UK members will consider doing the same, if they feel that they too are not being heard or feel their treatment is inadequate.
Written by Sheila, a UK Thyroid Patient:
Dear (MP’s should be addressed using their full name, i.e. Dear John Smith)
Considerable Financial Savings Achievable Within the NHS
I am aware that the new Coalition Government has issued a warning on the UK ‘s ‘staggering’ debt in preparation for the budget on 22nd June 2010, and that that the government face a “formidable” challenge to repair its battered public finances. I understand the deficit in question is already in excess of £150 billion – currently forecast to hit £163bn this year and I do believe that Thyroid Patient Advocacy (TPA) can help, preferably by way of a Public Enquiry as I can see no other avenue left open to us after the many government offices we have approached have failed to offer any help.
I would stress, that the problem is a political and/or legal problem. It is not a medical problem, because there are patient counterexamples to the dictates that medicine has made. There are dictates that show the treatment of patients by medicine is abusive.
First, just a little information about myself, I am a member of an Internet Thyroid Support Forum run by Thyroid Patient Advocacy (TPA). We have over 1740 members and 4 medically qualified advisers. Many sufferers are forced to leave paid employment because of continuing ill health and live on State Benefits, an unnecessary “tax” on the Nation’s wealth. The TPA web site www.tpa-uk.org. uk to help those suffering with “thyroid” disease, but especially those suffering the symptoms of hypothyroidism (an under active thyroid gland) was opened to campaign for a better diagnostic and choice of treatment protocol for those with thyroid disease and especially those suffering the symptoms of hypothyroidism, in order to help readers regain normal health. The NHS has failed all of these sufferers miserably. If these sufferers were diagnosed and treated correctly, under a properly revised protocol for the diagnosis and treatment of the symptoms of hypothyroidism, considerable financial savings would accrue to the Health Service.
Over 250,000 UK citizens are being denied a proper diagnosis because of the excessive `normal’ reference range of thyroid function blood tests. They are suffering the symptoms of hypothyroidism because of the seriously flawed ‘Guidance on the Diagnosis and Management of Primary Hypothyroidism’ created by the Royal College of Physicians, London (RCP) and the British Thyroid Association (BTA) et al. The `guidance’ tell doctors they should not give a diagnosis of hypothyroidism if a patients’ serum Thyroid Stimulating Hormone (TSH) test result is within the reference range of 0.5 to 10.0uM/L.
This UK reference range, is so wide, as to be unmatched by every other country on the globe. Many countries throughout the world have realised their TSH reference ranges were missing patients and agreed their range should be reduced considerably. The American Association of Clinical Endocrinologist’ s (AACE) have recommended TSH range be narrowed to 0.3mU/L to 3.0mU/L. In Germany , Belgium and now Sweden , it has been lowered to 0.3 to 2.5mU/L., with a recommendation by Belgium endocrinologists that the upper limit be dropped further to 1.5. Since America dropped the upper level of their range from 5.0mU/L to 3.0 in 2003, it was reported in 2005 that over 13 million additional sufferers had been given a diagnosis of hypothyroidism and treated with thyroid hormone replacement.
For those who are diagnosed, the RCP, BTA `guidance’ recommend doctors treat this condition with levothyroxine (T4) ONLY and that triiodothyronine (T3), (the ACTIVE thyroid hormone) whether synthetic or natural, should not be used. Thyroxine (T4) is a prohormone (mainly inactive) that must convert to T3. Synthetic thyroxine (Levothyroxine) does appear to work for many sufferers, but for a large minority, and for many and varied reasons, they are unable to convert it to T3. It is T3 that every cell in the body and brain needs to make them function – NOT thyroxine.
Frighteningly, the BTA and RCP are now boycotting all T3 containing thyroid hormone products. T3 is necessary for many sufferers. Medical science showed this over 40 years ago, yet the BTA, RCP refuse to acknowledge this fact. There are many patient counterexamples to the T4-only replacement, and there are many scientific counterexamples. Patient counterexamples are those who fare poorly under the medical prescriptions (T4 –only) and fare well under the medical proscriptions (T3). Again, these counterexamples demonstrate that there is no medical problem – only a political or legal problem. Consequently, the endocrinologists are wrong. Without T3, we die.
The proscription of T3 containing products is illogical, unethical and nonsensical and it is not medically reliable, as it has counterexamples in living, testifying patients and in peer-reviewed medical science journals.
I MUST stress the pernicious involvement of the RCP, BTA et al. as to the serious harm they cause through their many misleading and often incorrect statements, e.g. “the British Thyroid Association recommend the use of sensitive and specific blood tests as the only method for the precise diagnosis of thyroid dysfunction and for the monitoring of treatment with approved medications” and also “Overwhelming evidence supports the use of Thyroxine (T4) alone in the treatment of hypothyroidism. We do not recommend the prescribing of additional Tri-iodothyronine (T3) in any presently available formulation, including Armour thyroid, as it is inconsistent with normal physiology, has not been scientifically proven to be of any benefit to patients, and may be harmful.” Yet, to date, the BTA have not produced any “overwhelming evidence” – their statements are merely opinion. Their `opinion’ is harming patients.
Both of these statements are scientifically incorrect, yet the BTA, RCP refuse to accept the medical evidence available and they refuse to amend their `guidance’. Not one of these statements has been backed up by reference to relevant scientific studies. TPA, in refuting their claims, has adduced hundreds of references to which the attention of the RCP, BTA et al. has been drawn. Yet, they have never acknowledgement receipt.
The President of the Royal College has asserted that the RCP will not be entering into any further correspondence regarding this matter. For the quarter of a million sufferers who are being left without a proper diagnosis and correct treatment, this is an appalling statement
Doctors are afraid to go against such `guidance’ as they rightly fear being arraigned before the GMC (as some doctors have already been) so will not prescribe any T3, either synthetic or natural, even though this is indicated for specific patients. Instead, as a consequence, they are prescribing many and varied prescriptions for the various on-going symptoms, including selective serotonin reuptake inhibitors (SSRI’s) and antidepressants.
Whilst taking into account the costs of these medications, consideration must also be given to the massive cost to the NHS and also, the cost of other medicines prescribed when levothyroxine alone does not fully resolve the patients’ symptoms. Those patients who still exhibit symptoms when on levothyroxine only, are being told “you are suffering from a functional somatoform disorder” (meaning, it’s all in your head) or “you have non-specific symptoms”, or “you are getting old” – and no further investigation is undertaken.
Most patients being denied a proper diagnosis are prescribed antidepressants. I know this, because most of the 1725 members have confirmed this to be the case. Irving Kirsch’s study, which took place at the Department of Psychology, University of Hull (25 February 2008) is the first to examine both published and unpublished evidence of the effectiveness of SSRIs, which account for 16 million NHS prescriptions a year. The largest study of its kind concluded that antidepressant drugs do not work. More than £291 million was spent on antidepressants in 2006, including nearly £120 million on SSRIs. Depression, anxiety, memory loss and Alzheimer’s disease all have an association with lower thyroid hormone levels and research has shown that improvement can be achieved with thyroid hormone replacement therapy.
Further, those suffering the symptoms of hypothyroidism chronically use more prescription drugs, especially for diabetes, cardiovascular disease and gastrointestinal conditions. Again, these add a great financial strain on the NHS and an overwhelming burden to the quality of life of the quarter of a million sufferers in the UK alone.
Imprecise language causes and prolongs suffering:
Another very serious problem that exist are the two completely physiologically different definitions of ‘hypothyroidism’ given by the BTA and the RCP which is a cause for great concern and confusion amongst doctors and patients alike
- The RCP ( London ) defines `hypothyroidism as “the clinical consequences of insufficient secretion by the thyroid gland“ – meaning ‘hypothyroidism’ is ONLY associated with the THYROID GLAND. This definition is the correct and narrow definition.
- The BTA however, define hypothyroidism as “the clinical consequences of insufficient levels of thyroid hormones in the body“. This `broad’ definition is associated with peripheral metabolism and peripheral cellular hormone reception, which produces insufficient thyroid hormones in the body.
If the first definition is correctly called “hypothyroidism” , this should be treated with levothyroxine sodium. Therefore, the second definition should not be called `hypothyroidism’ . It should be given a diagnosis of `Clinical Euthyroidism’, `Type 2 Hypothyroidism’ or `Euthyroid Hypometabolism’ – and peripheral thyroid hormone deficiencies would be treated with the active thyroid hormone replacement T3 and NOT T4.
It does appear, that to avoid suggesting that T3 is needed, the diagnostics recommended for the symptoms of hypothyroidism focus only on the thyroid gland. When these symptoms continue, because they come from elsewhere, i.e. peripheral thyroid hormone deficiencies at cellular level, they are not treated by medicine. Instead, if a patient continues to complain of the symptoms of hypothyroidism, s/he is given the bogus excuse of “you are suffering from a functional somatoform disorder” – “your symptoms are non-specific” or “its old age”. The result of these continuing symptoms is a reduction in the patient’s ability to function, or to resist the dangerous consequences of low thyroid, which include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, anaemia, elevated CPK, elevated creatinine, elevated transaminases, hypercapnia, hyperlipidaemia, hypoglycaemia, hyponatraemia, hypoxia, leukopaenia respiratory acidosis and others….
Last year, Anne Milton MP asked a Question in the House on our behalf in order to obtain clarification of the correct definition of hypothyroidism. Ann Keen MP was asked to give an answer, but her response was not satisfactory, so clarification of this matter remains unresolved.
We have made repeated approaches to the DoH over the past 6 years, but they have systematically ignored us. All they have done is to send one of their many appropriate pro-forma letters by way of response.
The diagnostic and treatment protocol for those suffering the symptoms of hypothyroidism must be thoroughly investigated without delay. Such confusion in the definition is one of the main causes for over a quarter of a million patients being improperly diagnosed and improperly treated. If this issue were fixed, then the NHS would save millions of pounds and the quarter of a million suffering the symptoms of hypothyroidism would no longer be ignored.
We are unable to progress in our campaign for a better diagnostic and treatment protocol in this matter, because of the intransigent opposition from the Royal College of Physicians (London) and the British Thyroid Association, to any suggestion that they should change their policy stance in their guidance on the diagnosis and management of primary hypothyroidism in the face of a great deal of scientific evidence adduced to support this demand for change.
In short, the RCP, as a setter of medical standards to improve medical practice through self-regulation, appears to be “above the law” and a ‘closed shop’. Their standards and quality are seen as implicit rather than explicit, with government and society trusting them to protect the public, and granting the profession considerable autonomy in the process.
Please will you help all sufferers of the symptoms of hypothyroidism by asking Andrew Lansley MP, who has the power to put an end to this appalling situation, to at last, put an end to such unnecessary suffering. However, I can only see this being given the justice it deserves through a Public Enquiry.
I await hearing from you in due course, but if, meanwhile, you would like further information about this matter, please contact Sheila Turner (founder/owner of TPA)
If you go to WriteToThem.com and type in your Post Code, you will be directed to your MP and you can write to him/her direct.
Link to the questionnaire