We Are At The Beginning Of Change…
Wednesday December 7th 2016

Archives

All UK And Multi-National Thyroid Patients And Organizations, Now Hear This! UPDATE

Post Published: 04 July 2010
Author:
Category: Guest Bloggers, thyroid news, UK Thyroid Patient News
This post currently has 30 responses. Leave a comment

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.

(From Sheila)

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
abusive.

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:

  1. WHY do the GMC, the RCP, the BTA et al. deliberately choose to ignore the scientific evidence that has
  2. been available for over 40 years ?
  3. WHY are medical associations ignoring the 13% failure rate of T4-only therapy for the past 50 years?
  4. Why are patient’s complaints dismissed?
  5. WHY has there been no correction to the RCP statement when there are patients who are counterexamples to the validity of T4-only therapy?
  6. WHY is the confusion of two definitions for ‘hypothyroidism’ allowed to continue?
  7. WHY are guideline authorship and concise guidance to good practice protocols ignored?
  8. WHY are individual symptoms of hypothyroidism stated to be “non-specific” when Baisier found groups of these symptoms may be quite specific?
  9. 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?
  10. WHY are the studies by Das (2007) and Lewis (2008), which found that patients could be successfully treated with thyroid extract being ignored?
  11. WHY is medicine ignoring false negative test results?
  12. WHY do doctors refuse to explain and/or justify their decisions, thereby withholding information necessary for valid consent to treatment?
  13. 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?
  14. 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)

Kind regards,

Sheila

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

Be Sociable, Share!

Tags: , , , , ,

Follow Dear Thyroid on Twitter/@DearThyroid | See our Facebook Page | Become a Fan on Facebook | Join our Facebook Group

You Can Create a Dear Thyroid Profile and share with friends!

Reader Feedback

30 Responses to “All UK And Multi-National Thyroid Patients And Organizations, Now Hear This! UPDATE

  1. Bravo Lolly and Sheila! You explained so well the problems that face thyroid patients in the UK. Indeed, something has to be done and awareness has to be raised.

  2. Lori says:

    Lolly and Sheila – this letter is spot on and explains so well what is so desperately needed. If only they could see how much money would be saved by doing the right thing. It should be that simple!

    Very well done!

  3. Bee says:

    You go girls!!! I hope you find much support from thyroid sufferers on your side of the pond. Your info was so informative that i will be using some of it to beseach my doc for a trial of T3 along with my synthroid when I see her for follow up this wk. I’m working o finding a T4T3 conversion chart to give her as well because i doubt she’s on top of this addition. Good luck in your stuggles. i’m def on your side

  4. Miriam says:

    Congrats Lolly and Sheila for explaining all this. We UK Thyroid “sufferers” which indeed we are thanks to the so called NHS have been under treated for many years (myself for 20+ yrs!) and I hope this new coalition government will look into this and hopefully agree to change is needed once and for all to help us poor UK sufferers.

  5. Miriam says:

    Those of you in the UK who are trying to copy and paste this letter to your MP via the link above, will not be able to send it as it does not allow coping and pasting of already constructed letters, so sadly I was unable to send this to my local MP. So the only way it seems is to re word it and type it out word for word.

  6. Dawn says:

    As the Chair of Thyroid-Disease.Org.Uk (website the same) I have been in contact with the DOH and the Health Secretary (who I met when he was the shadow one and seems very nice and helpful) and can report that many of the things we are being told by drs as regards to are treatment do not come form the DOH.

    I will be publishing this correspondance on our website within the next couple of days so that you can use it when you visit your docs

  7. Miriam, how about copying and pasting it into a Word document and then on to the MP’s website. I wonder if that would work?

  8. Lolly says:

    Miriam,

    I will send you via email you should have no problem copying it then.

    Lolly

  9. Dear Thyroid says:

    Hi Everyone! There is an icon to print this letter on our site. If you look just under the SHARE THIS toolbar, listed on this post, click the first icon and the letter will print.

    LOVE, LOVE, LOVE THE OUTPOURING OF SUPPORT AND ENTHUSIASM FOR CHANGE.

    Share this with everyone!

    WE WILL INVOKE CHANGE. WE ALREADY ARE.

    XO

  10. Lolly says:

    Katie,

    I just want to thank you so much on behalf of Shelia and myself for letting us do this it means so much that we can all get together and unite for one common goal and that is to invoke change and a better undertanding of treatment protocols and awareness no matter where you live, the World is at our fingertips.

    Lollyx

  11. Lolly says:

    Sarah,

    Something most definitely has to be done, time to stand up and be counted there are enough of us still being mismanaged.

    Lollyxoxxo

  12. Lolly says:

    Lori,

    It’s not just about the UK it;s about all thyroid sufferers alike we need that change badly in the uK because of the poor substanded treatment wer are getting but i know it just doenlt happen here but all over the world that is what unites us all.

    I tried to fight alone that didnl;t work now I have to do something for my own wellbeing and others that aftre not being treated correctly.

    TY for your support.

    Lollyxoxox

  13. Lolly says:

    Bee,

    So pleased to hear not only is the information helping us here in the UK but also others who have had substandard treatment thus far you use what you need girl to get the care you rightly deserve.

    Love ya bee.

    Lollyxoxox

  14. Lolly says:

    Dawn,

    Thank you for giving out that information I look forward to reading there replies. Do you connect with Sheila on TPA.UK we can all work together on this one.
    She is trying to get everyone together from all over the world, united we stand divided we fall.

    Lolly

  15. Lolly says:

    Dear Thyroid,

    Thank you for explaining how to copy the letter to MP that is a great help.

    Lollyx

  16. Lolly says:

    Thank you Katie for updating this with links this is all Shelia’s work I can’t take any credit at all.all I want to do is spread the word and get the link ups so we can all work as a whole still keeping our individuality.

    Lolly

  17. Lolly says:

    Also you can send this letter via email which I am just doing now so would need to copy and paste it you don’t have the icon for copy so if anyone does get stuck please let me know.

    Lolly

  18. Lolly says:

    Katie what a great Idea to tell 5 friends pass this around i have just sent my email off to my MP Iian Stewart and await a reply. As soon as I hear anything i weill let you and shelia know everyone who sends an email/ Letter please update if you do get a response.

    Keep this going.

    Katie and Dear Thyroid thank you so much for doing this for us all it really means so much to many of us.

    Lolly

  19. Dear Thyroid says:

    We have to band together. We really do. We have to send the link to this post to all of our friends, and ask them to send to 5 more friends. We need to Tweet/Facebook it, etc. The more we involve everyone else, the more we can really make change 🙂

    We’re a thyamily, Lolly.

    xo

  20. Lolly says:

    I so agree 100% twweet face book send to friends anythubg we can do to spreasd the word get as many letter to MPs so they hac=ve to stasnd up and listen and speak on our behalf.

    I have already gotten a reply from mine just to say this..LOL

    Thank you for your email.

    I shall reply as soon as possible. However, as we are receiving a very high volume of correspondence at the moment, it may take a little while to respond.

    If you have an emergency issue, however, please contact my office on

    Please make sure that you have included your postal address and contact telephone number in your email. This will help to deal with your enquiry as speedily as possible.

    Kind Regards,

    Iain Stewart MP
    Member of Parliament

  21. Lolly says:

    Katie We are thyamily I got all my thyrella/fellas with me.

    Great thytune for a great place.

    Looly

  22. Lolly says:

    Now I’m caling myself Looly take the L replace it with an N you got what.

    Loony.

    Lolly

  23. Lori says:

    Tweeted and FB’d!

  24. Linda says:

    Bravo LOLLY, you go girl! I’m so proud of you~!@ xxxLinda(Linny)

  25. Sheila says:

    Hi Everybody, you can copy the letter I wrote to my MP by using the following link http://www.tpa-uk.org.uk/letter_to_mp.doc. However, don’t forget to change it where appropriate so it looks like it came from you, rather than me.

    I would also urge you all to sign Dr Gordon Skinner’s World Wide Thyroid Register. Dr Skinner is one of the Medical Advisers to Thyroid Patient Advocacy and feels passionate about thyroid patients throughout the world getting together to make things happen, once and for all. We must not allow what is happening to those suffering so unnecessarily to continue. We MUST do
    something now. SO PLEASE, TAKE JUST A MOMENT TO SIGN DR SKINNER’S REGISTER HERE http://www.worldthyroidregister.com and please ask your family and friends to sign it also.

    And while you are signing this, if you are a sufferer of the symptoms of hypothyroidism who fared badly on levothyroxine (T4) only therapy, yet you got your health back when using a T3 containing product, either synthetic or natural thyroid extract, then please respond to the four short questions (YES or NO)to enable me to create a World Wide Register of Counterexamples to T4 only therapy http://www.tpa-uk.org.uk/register_of_counterexamples.php. This Register will then be sent to all the medical boards, medical schools throughout the world, to show that they are wrong, wrong, and wrong again when the ‘medical masters’ in endocrinology insist that everybody can regain normal health on thyroxine only. All responses will be collated ONLINE. The synopsis and questionnaire has been translated into Swedish, German, French, Dutch, Italian and Danish. You can read more about these in the TPA Spring/Summer Newsletter http://www.tpa-uk.org.uk/register_of_counterexamples.php

    Enough is enough, it’s time for all of us to take off the kid goves and put on our boxing gloves. As each day passes, I am more and more appalled by the RCP and BTA refusal to acknowledge the medical science available to them that shows how wrong their diagnostic and treatment protocol with T4 only therapy is.

    If there are any owners of thyroidm or thyroid related web sites and Internet Thyroid, or thyroid related Support Forums – please will you help in this enormous campaign by pasting the above links onto your web site and/or on to all your members, urging them to sign the appropriate World Wide Registers and also, if they have not already done so, to sign the International Hypothyroid Patient’s Petition for better diagnosis and treatment choice.
    http://www.intlhormonesociety.org/index.php?option=com_contentandtask=viewandid=31andItemi
    d=53andtomHack_idp=10

    Luv – Sheila

  26. Lolly says:

    Thank you Lori, and Lisa.

  27. Lolly says:

    Sorry should be Linda Who Lisa.

  28. Lolly says:

    Sheila,

    I want to thank you for coming in, this is your brainchild and all your hard work and we want to Help as much as we can.
    We are all on the same page here.

    I sent my letter to my MP and am just awaiting a reply, will let you know as soon as I do.

    We are spreading the word around lets not just get the boxing gloves on leet kick ass.

    Thank you so much Sheila.

    Luv
    Lolly

  29. Linda says:

    thank you both for getting this out…..Linda

  30. Lolly says:

    Hold fire with answering the questions on
    http://www.tpa-uk.org.uk/register_of_counterexamples.php

    It is being redone and translated into different languages as too many people are finding it hard to answer all the questions.

    I will post the new link to it as soon as it has been done. I hope that you will all take the time to read it and if it applies to you answer the questions this is open to anyone no matter where you live. And will help so many

    TY Lolly

Leave a Reply

Comments are moderated in an effort to control spam. If you have a previously approved Comment, this one should go right through. Thanks for your patience!