Letter to MP

[Guest guest]

Below is a copy of the letter I have just sent to my MP (n ). In case you would like to copy this and send to your MP, you can cut and paste this as it is into a message to him/her, writing in his/her name and adding your own name/address and telephone number. It is ONLY by keeping on at our MP's and giving them the true facts that one day, they will wake up and realise that what we have been telling them for years has fallen on the governments deaf ears and they will want a Public Enquiry as much as we need one. The more MP's who receive such messages the more they are likely to discuss this problem amongst themselves and then bring this to the attention of the Secretary of State.

If you are unsure who your MP is, or you have no idea where to write to, please go here http://www.writetothem.com/and type in your Post Code. The name of your MP will be shown and you can write your own letter on the page that comes up, or copy and paste the letter below, and it will be forwarded direct.

Luv - Sheila

__________________________________________

Dear (Your MP's name)

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 and that Government faces a "formidable" challenge to repair its battered public finances. I understand the deficit, already in excess of £150bn, is forecast to hit £163bn this coming year and that you need suggestions where massive savings could be made.

I can give you one suggestion, and I apologise in advance for the length of this letter, but please read it all. I am a member of the Internet Thyroid Support Forum 'Thyroid Patient Advocacy' (TPA) www.tpa-uk.org.uk, and membership, to date, stands at over 2280. TPA is a Registered Charity No. 1138608 and its aims are to campaign for a better diagnostic and choice of treatment protocol for those suffering the symptoms of hypothyroidism.

On-going ill-health has forced many sufferers to leave paid employment and live on State Benefits – an unnecessary "tax" on the Nation's wealth. Accurate diagnosis and appropriate treatment under a properly revised protocol would help them regain normal health and bring considerable financial savings for the Department of Health.

I believe TPA can help if the Government orders a Public Enquiry into the events, actions and statements published by the Royal College of Physicians (RCP) (London) and the British Thyroid Association (BTA) et al. Their actions have denied at least, 250,000 UK citizens an appropriate choice of thyroid hormone replacement that would return them to optimal health.

The problem appears to be political and/or legal, rather than medical, because there are many, many patient counterexamples to the dictates that medicine has made, and is making. TPA has created a Register of Counterexamples to levothyroxine-only (T4) therapy of those patients who remained with symptoms of hypothyroidism on T4-only therapy, but who's symptoms were mitigated or went away using the active thyroid hormone Triiodothyronine (T3) therapy. To date, the number of counterexamples in this Register stands at 1280. (A counterexample is a situation which fits the concept or premise of an idea but produces a different result. To be responsible, a scientist who finds a counterexample to his idea, must limit or abandon his idea as unworkable or not reliable.

Some of these clearly show the present treatment recommended by the RCP, BTA et al, of many patients with symptoms of hypothyroidism, contravenes their Human Rights. Please do not allow this to continue and as my MP, do everything within your power to bring this terrible situation to an end.

Tens of thousands of UK citizens are being denied a proper diagnosis because of the excessive `normal' reference range of thyroid function blood tests. The seriously flawed 'Guidance on the Diagnosis and Management of Primary Hypothyroidism' tells 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 unmatched by any other country in the world.

Many countries, realising their wide TSH reference ranges were missing patients, reduced their range considerably. In 2003, the American Association of Clinical Endocrinologist's (AACE) recommended their TSH range be narrowed from 0.5 to 5.0 mU/L to 0.3mU/L to 3.0mU/L. At the same time, Germany, Belgium and Sweden's range has also been narrowed down to 0.3 to 2.5mU/L. Belgian endocrinologists recommend the upper limit be dropped still further to 1.5. In 2005 in the US, a further 13m + sufferers were diagnosed and treated with thyroid hormone replacement.

Every cell in the body and brain needs T3 to function – NOT T4. Yet, RCP, BTA et al. statements recommend doctors treat hypothyroidism with the mainly inactive T4 ONLY, and that T3, (the ACTIVE thyroid hormone) whether synthetic or natural, should not be used. T4 is a pro-hormone that must convert to T3, or it is unusable, and the body becomes toxic with too much T4 in the blood. T4 `appears' to work for many sufferers, but a large minority, for many and varied reasons, are unable to convert it to T3 and are being left to suffer for years.

Frighteningly, the BTA, RCP et al. actively boycott all T3-containing thyroid hormone products, even though many need T3. Without T3, we die.

Medical science showed this over 40 years ago, yet the BTA, RCP et al. refuse to acknowledge this. There are many patient and scientific counterexamples to T4-only treatment. These patients fare poorly under the medical prescriptions of T4-only, but do well using a T3 hormone containing product.

The proscription of T3 containing products is not only illogical, unethical and nonsensical; it is not medically reliable. Many counterexamples are found in living, testifying patients and in peer-reviewed medical science journals. Again, the numerous counterexamples demonstrate the problem is political or legal, rather than medical.

I MUST stress the pernicious involvement of the RCP, BTA et al. as to the serious harm they cause through 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."

There is no scientific proof that T4-only benefits patients. No studies or clinical trials have ever been done. To date, the RCP and BTA have not produced any of the "overwhelming evidence" – their statements are merely opinion. This `opinion' is harming patients.

Please will you do all you can to persuade the Secretary of State to order a Public Enquiry into the statements published by the RCP, BTA et al. Their statements are denying at least, 250,000 UK citizens an appropriate choice of thyroid hormone replacement therapy that would return them to optimal health.

The RCP, BTA et al. refuse to acknowledge Dr. Marshal Goldberg's paper which explains why there are failed diagnostics, i.e., false negative diagnostics which the RCP et al refuse to consider. Goldberg's thesis is backed up by Refetoff [Refetoff S, Weiss RE, Usala SJ, The Syndromes of Resistance to Thyroid Hormone, Endocr Rev, 1993, 14(3):348-399] and Braverman [braverman LE, Ingbar SH, Keinwem S, Conversion of Thyroxine (T4) to Tri-iodothyronine (T3) in Athyreotic Human Subjects, The J Clin Invest, 1970, 49] and their respective co-authors. Goldberg points to other papers that claim to have observed failures in the T4-only therapy (1947 & 1954) as well as the paper by Baiser et al. [baisier, WV, Hertoghe, J, Beekhaut, W, Thyroid Insufficiency? Is Thyroxine the Only Valuable Drug? Journal of Nutritional and Environmental Medicine, Vol 11, No. 3, Sept 2001, pp 159-166].

We have sent these papers to the RCP, BTA et al., on numerous occasions and asked them to take this scientific research into account, but they do not. Proper differential diagnostic protocol requires examination of all physical issues, as does the evidence-based medicine.

The RCP, BTA ignore low body temperature when trying to reach a diagnosis. Yet the top two causes for low body temperature are Hypothermia and Hypothyroidism (under-active thyroid). The RCP, BTA refuse to accept the medical evidence available or to amend their `guidance/statements accordingly. TPA, in refuting their claims, has adduced hundreds of references to which the attention of the RCP, BTA et al. has been drawn. They have never acknowledged receipt.

The President of the Royal College has asserted that the RCP will not enter into any further correspondence regarding this matter. For the 250,000+ sufferers in the UK left without a proper diagnosis and correct treatment, this is an appalling statement, and for sufferers, is extremely frightening - and this is why TPA is calling for a Public Enquiry to stop the terrible harm that is being caused.

Doctors are now openly telling their patients that they are afraid to go against such `guidance/statements' as they rightly fear being arraigned before the GMC (some doctors have already been) so will not give a diagnosis of hypothyroidism if their patients serum thyroid tests are within the so called `normal' reference interval (even though their patient is presenting with numerous symptoms and signs), or refuse to prescribe any form of T3, even though this is indicated for specific patients. Instead, they prescribe many and varied prescriptions including selective serotonin reuptake inhibitors (SSRIs) and antidepressants.

Most patients who are being denied a proper diagnosis are prescribed antidepressants; the majority of our 2280 + members have confirmed this. The study by Irving Kirsch, Department of Psychology, University of Hull (25/02/2008) is the first to examine both published and unpublished evidence of the effectiveness of SSRIs which account for 16 million NHS prescriptions a year. This study, the largest of its kind, concluded that antidepressants 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. Research has shown that improvement can be achieved with thyroid hormone replacement therapy.

Further, those suffering symptoms of hypothyroidism habitually use more prescription drugs, especially for diabetes, cardiovascular disease and gastrointestinal conditions putting great financial strain on the NHS and an overwhelming burden on the 250,000 sufferers in the UK.

Imprecise language causes and prolongs suffering

The BTA, RCP et al. give two completely physiologically different definitions of 'hypothyroidism'. This causes concern and confusion amongst doctors and patients alike.

s 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.

s 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 can, hopefully, be treated with levothyroxine sodium-only and quite successfully. But then the second definition should not be called `hypothyroidism'. The diagnosis should be `Clinical Euthyroidism', `Type 2 Hypothyroidism' or `Euthyroid Hypometabolism'. Peripheral thyroid hormone deficiencies would then be treated with the active thyroid hormone replacement T3 – and NOT T4.

It appears that, to avoid suggesting 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 resistance to thyroid hormone at cellular level, they are not treated by medicine. Instead, if a patient continues to complain of the symptoms of hypothyroidism when being treated with T4-only therapy, and has `normal' thyroid function test results, s/he is told "you are suffering from a functional somatoform disorder" or "your symptoms are non-specific" or "its old age".

These continuing symptoms reduce the patient's ability to function or to resist the dangerous consequences of low thyroid, e.g. serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, and 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, anaemia, elevated CPK, elevated creatinine, elevated transaminases, hypercapnia, bladder problems leading to infections, hyperlipidaemia, hypoglycaemia, hyponatraemia, hypoxia, leukopaenia, respiratory acidosis and others....

An attempt has been made by an MP previously who asked a `Question in the House' on behalf of TPA in an attempt to obtain clarification of the correct definition of hypothyroidism. Ann Keen MP was asked to give an answer at that time, but her response was unsatisfactory, so clarification of this matter remains unresolved. Please will you take up this matter on behalf of myself and all those being left to suffer with symptoms of hypothyroidism and who are not being given the correct thyroid hormone to give them back their optimal health and once and for all bring this matter to a satisfactory conclusion? A correct definition of `hypothyroidism' is vital.

Repeated approaches to the DoH in the past have been systematically ignored other than to send one of their many `standard' letters that have not addressed the matter. Obfuscation around the definition of hypothyroidism is one of the main reasons quarter of a million + patients are improperly diagnosed and inadequately treated. Fixing this could save the NHS millions of pounds and the 250,000 + being left to suffer could enjoy much improved health.

The TPA campaign for a better diagnostic and treatment protocol cannot progress because of the intransigent opposition from the RCP, BTA et al. They refute any suggestion that they should change their policy stance in their guidance on the diagnosis and management of hypothyroidism despite the great deal of scientific evidence adduced to support this demand for change, which they continually refuse to acknowledge. The DoH is allowing this to continue.

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, so granting the profession considerable autonomy in the process. And there lies the problem…

PAST AND PRESENT GOVERNMENTS HAVE ALLOWED THIS SITUATION TO CONTINUE AND THE TIME IS LONG PAST FOR A COMPLETE AND PUBLIC ENQUIRY OF THIS ISSUE TO BE CARRIED OUT.

Please will you help me and all sufferers of the symptoms of hypothyroidism by asking the Secretary of State for Health, who has the power to put an end to this appalling situation once and for all, and to stop this unnecessary suffering, to look into this matter?

A Public Enquiry is IMPERATIVE to give hypothyroid sufferers the support and the justice they deserve.

I look forward to hearing from you. Meanwhile, if you would like further information about this matter, please contact me.

Kind regards

Name - Address and Telephone Number.