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There’s a dynamo Thyroid Patient Advocate you should know about!

Sheila Turner TPA-UKI’ve been doing this a long time.

And early on in my activism, I became acquainted with someone else who was fighting for better hypothyroid diagnosis and treatment. And she was a bulldog! She chose NOT to “walk the fence”… instead speaking the bold truth about the scandal of the current popular thyroid diagnosis, as well as treatment with thyroxine for all too many. She has numerous times over the years written the governing bodies in the United Kingdom as to the problem, including with her communication “hundreds of references” to available research and studies to back up the issue.

Her name is Sheila Turner, and she’s the founder of Thyroid Patient Advocacy in the UK (TPA-UK).

And Sheila is a HERO!

Similar stories

Like myself and millions of you, Sheila suffered on thyroxine, which she also terms as “monotherapy”. She had “fatigue, weight gain, coldness and hair loss”–the latter even all over her body! And her pain was so bad that she couldn’t even pick herself up off the floor.

She finally managed to find a maverick doctor who put her on Natural Desiccated Thyroid, and she says “The sun came out!” She has now been happily pain-free and symptom-free for over 13 years. I identify, Sheila!

And her transformation led to the creation of her TPA-UK website and thyroid support forum just for UK patients and more, “dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.” The use of the word IGNORED couldn’t be better said, Sheila.

Others who work with TPA-UK

What I have loved about Sheila’s website and work are all those who are associated with it. They are:

– Barry Durrant-Peatfield, (UK) MB BS LRCP MRCS who serves as Patron and medical advisor
– Malcolm Maclean MD (UAE)​, a Scot practitioner who has rejected the idea that being “normal” in labwork means a patient couldn’t possibly have a thyroid problem. Dr. Maclean also wrote a brilliant STTM Guest Blog post about the effects of high doses of iodine
– Kent Holtorf, MD, the medical director of the Holtorf Medical Group and non-profit National Academy of Hypothyroidism.
– Gina Honeyman, DC, owner of the Center for Metabolic Health, LLC and co-author of a fabulously detailed book titled “Your Guide to Metabolic Health.” 
– Jacob Teitelbaum, MD,  a board certified internist and Medical Director of the national Fibromyalgia and Fatigue Centers and Chronicity.

Sheila’s latest concern and confrontation: Possible removal of Liothyronine (T3) from the NHS Prescription list

Just one more example of Sheila’s persistent and unflagging fight for better treatment, she has stood up in immediate defiance about the possible removal of T3 medication from the publicly-funded National Health Service (NHS) Prescription List–a potential removal as recommended by the NHS-funded program called PrescQIPP. (Only the second middle link on their website is working for me to view the Drop list.)

PrescQIPP is recommending the following:  

  1. They do NOT recommend the prescribing of liothyronine or T3-containing products for the treatment of primary hypothyroidism
  2. They do recommend prescribing of thyroid hormones in line with Royal College of Physicians guidance (which means thyroxine, T4-only, monotherapy).

The rationale of the above ridiculous comments? Are you ready??

– T3 has a short half-life

– Steady-state levels cannot be maintained

– No robust evidence i.e. has not been shown to be more beneficial that levothyroxine with respect to cognitive function, social functioning and well-being

– Inconsistent with normal physiology

– Insufficient clinical evidence of effectiveness and cost effectiveness to support the use of liothyronine (either alone or in combination) for the treatment of hypothyroidism. 

To the contrary, the evidence of consistently-reported therapeutic efficacy of T3-containing medications by a huge and growing body of thyroid patients worldwide is clearly important and worth consideration if the medical profession has even one intelligent and open-minded cell in their brains.

EVEN WORSE, their recommendations show how to move patients off their T3 and onto T4-only.

And in Sheila Turner’s latest newsletter, she states with her typical and dynamic activism:

The information about liothyronine by PrescQIPP is both mis-leading, and some of it is downright incorrect.  I am in the process of writing a response to PrescQIPP asking them to remove the hormone liothyronine from the ‘Drop’ list with immediate effect and I will give all the reasons they need to do this.  If such organisations as the BTA, NICE, NHS UKMi (Q56.6) and PrescQIPP learnt how the different thyroid hormones work, there would be no controversy and if L-T4 left patients with continuing symptoms, the active thyroid hormone T3 would be given automatically and without complaint.  I intend to ensure they know how thyroid hormones work.

Bottom line, Sheila Turner is a strong friend of thyroid patients who is persistent in her quest to drive in the TRUTH about what appears to be a backwards and dark ages medical system in the United Kingdom about how a thyroid works, about diagnosis, and about successful treatment protocols. And what Sheila might achieve in the UK will only help the rest of us!

You are a hero, Sheila!

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

– CHECK OUT THE LATEST VIDEO, which includes patients in the UK, and which underscores the FALLACY of T4-only, thyroxine treatment: https://www.youtube.com/watch?v=2n0NfAUyOKo

– Have you Liked the Stop the Thyroid Madness Facebook page? It’s full of daily inspiration and information based on solid patient experiences and wisdom!

– TPA-UK forum: http://www.tpauk.com/forum/

Read more on Sheila’s website:

http://www.tpauk.com/main/article/rcpbta-failures-harming-approx-300000-uk-citizens-suffering-symptoms-of-hypothyroidism-part-1/

http://www.tpauk.com/main/article/tpa-survey-finds-thousands-of-patient-counterexamples-to-l-t4-monotherapy/

http://www.tpauk.com/main/article/its-not-all-in-our-head-professor-weetman/

http://www.tpauk.com/main/article/the-best-clinical-guidelines-money-can-buy-a-look-at-guidelines-bias-and-thyroid-treatment/

http://www.tpauk.com/main/article/on-the-clinical-diagnosis-and-treatment-of-hypothyroidism/

65 replies

We are sad at the passing of Edna Kyrie of the Thyroid History website

From Sheila Turner of TPA-UK:

Some of you, probably the majority of you, will have heard about Edna Kyrie of ‘Thyroid History’ fame website: http://www.thyroidhistory.net

It is with great sadness that I write to you  to let you know that Edna died earlier this week, following serious digestive tract complications arising from her MS diagnosis. Her condition deteriorated a lot this past year, leading to a couple of long hospital stays. She died at home in her London flat with her main carer and friend, Kieron. Edna was in her mid to late forties.

In 1985,  Edna was diagnosed with Multiple Sclerosis — a diagnosis she still questioned, right up to the day she passed away. In 1998 Edna also found out she had an under-active thyroid, it was this diagnosis that encouraged her to found the wonderful scientific web site ‘Thyroid Research’. She said: “I read a book on the thyroid and was amazed by how much could be affected by it, I decided to follow up the references at the back of the book, and so the project began.”Today, thyroidhistory.net holds over 1,200 abridged articles on the diagnosis and treatment of thyroid related illness, photocopied from books and journals in The British Library and scanned onto her computer at home. She said: “At one point I was spending £70 a week on photocopying. I just feel so passionately about this.” What has shocked Edna most, and what she talked about most animatedly, is the medical research by long-dead doctors that has been lost over the passage of time. Edna said “In the 1880s when they wrote about the thyroid they thought they’d found the elixir of youth. There is all this incredible work that had just been forgotten about.”The website sprang from a determination that the knowledge of thyroid function in many common illnesses is made available. Edna thought at the start that if she could just help one person it would be worth it, and she soon learned that she had helped many, many more than that – and will continue to help so many more in the future.

Edna’s health had declined in recent months and she was not getting to the British Library as much as she used to, but she continued adding to the website from a backlog of copied articles. She said “I worship The British Library and I feel I have this queue of long-dead doctors and physicians looking over my shoulder encouraging me,” and “This is what I have built my new life around — before all this happened I was a singer and a psychotherapist, I just can’t believe how much things have changed.”

Edna will be greatly missed, but her work lives on. I was fortunate enough to have met Edna and we have corresponded since. I first met her at Dr Skinner’s original IOP Hearing in London. Everybody found her to be a warm, kind, funny person who was totally dedicated to thyroid research and to make this available to all who will read it. I know that without her research, Thyroid Patient Advocacy would not be where we are today.

Edna and her work has been an inspiration to me personally. Thank you dear Edna. Details of the funeral will be posted as soon as possible.

Our condolences have been passed to Kieron Deahl, a very close and dear friend of Edna’s.

Sheila
Thyroid Patient Advocate
www.tpa-uk.org.uk

5 replies

Touching message from a near-91 year old New Zealand resident who feels his government is keeping him sick…

Screen Shot 2015-08-10 at 10.38.26 AM(Though this post was originally written in 2012, it is still appropriate even today! Enjoy!)

I am impressed if ANYONE over 70 years old is active on their computers, especially because they didn’t grow up with one, nor did their own children. So when I get a message via Facebook from a near 91-year-old man in New Zealand who clearly knows his stuff, I am doubly impressed.

But this story is poignant, aggravating, and the very reason Stop the Thyroid Madness exists–to educate YOU in the face of medical and government leaders who are completely clueless! Do we have to wait for our current crop of government officials to be forced or voted out of office  before we see this thyroid diagnosis and treatment travesty stop???

Dear Janie, I am 90 years and 10 months old, and have a TSH of 3.5 . My doctor, using the range of 0.4 to 4, declared me OK and not hypothyroid. This margin is used by the New Zealand Governments Ministry of Health (M.O.H). My letters to the M.O.H. of New Zealand to read the article written by the AACE in America of  January 2003 (to bring down the margin to 0.3 to 3.04) were not taken into consideration.

I am a permanent resident in New Zealand. Because of my repeated requests, they even blocked my letters to them, and in the meantime, leaving me suffering. Have been suffering about 3 years with “Chronic Fatigue Syndrome”.  Found your articles on the Internet and bought your book Stop The Thyroid Madness.

My doctor gave me Synthroid and when it didn’t work, wanted to raise the dosage. Fortunately I was in possession of the book Overcoming Thyroid Disorders by David Brownstein M.D. and refused. Indeed, I share all the “Common Experiences We All Share” as written in your book . My doctor has even referred me to a Psychiatrist—unbelievable! Of course I told the Psychiatrist who works for the N.Z. Public Health Department straight away that I will have nothing to do with him. Just to do something, he wrote me a prescription for a drug used for people who are lunatic. Gave the prescription to the doctor to throw it in his rubbish bin!

Am now looking for a knowledgeable N.D. but have not succeeded yet . They are either not knowledgeable enough about thyroid disorders or too expensive for my pensioner income. Have obtained dessicated thyroid from a compounding pharmacist, but don’t dare to take it without guidance. In the meantime, I have to eat frequent small meals just to prevent awful anxiety attacks or to feel reasonably well ..and the doctor calls me euthyroid?

Well Janie, that is my story. Am so glad that you have written your book, thanks, and that I just today received it by mail order on the Internet. With my best regards – ****

P.S. Of course you can publicise my letter to you. Hope that it will help a bit in our struggle to get proper treatment and that people all over the world will know how indifferent governments can be.

THINK THIS PROBLEM IS ONLY WITH NEW ZEALAND? PATIENTS AROUND THE WORLD SHARE THE SAME STRUGGLES!

Sheila Turner, a Thyroid Patient Advocate in the UK and creator of TPA-UK, has worked tirelessly to change the DARK AGE medical treatment protocols that UK thyroid patients have to endure. Here is a letter she wrote July 2012 to the President of the Royal College of Physicians in one of many attempts to change the inane poor practices: http://www.tpa-uk.org.uk/Report_RCP_et_al.pdf

DR. JOHN C. LOWE’S WEBSITE “THYROID SCIENCE” BACK UP!

http://www.thyroidscience.com/

JanieSignature SEIZE THE WISDOM

New to this?

* Read why the TSH lab test can be a huge failure. 
* See why Synthroid or any other T4-only med can be a problem, sooner or later.
* To read what happens when your brain doesn’t get enough of the thyroid hormone T3, go here.

* To have the Stop the Thyroid Madness revised book in reach for reference, go here.

* To get more tips, inspiration and information, Like the STTM Facebook page.

30 replies

The UK’s GMC is at it again—challenging Dr. Skinner! Your help is needed.

What in the world is up with the medical system in the United Kingdom??

UK thyroid patients report it’s almost impossible to be on natural desiccated thyroid–a treatment which simply gives a thyroid patient back the T4, T3, T2, T1 and calcitonin that a healthy thyroid would be making.

And now, the General Medical Council has decided to once again challenge a doctor who DARED to treat symptoms with a lab result in range, even though the patient clearly has hypothyroid symptoms. Thyroid patients are INFORMED patients, and we know the difference between what a man-made fallible lab range shows, and how we feel, especially the lousy use of the TSH lab test.

I first wrote about the Circus of Shame concerning the challenge Dr. Skinner’s fitness to practice here, which was 2006.  Finally, five years later in 2011, you can read about Skinner being exonerated of all charges here! It was exciting.  Sheila of TPA-UK outlines concerns with this entire fiasco here.

But it appears the General Medical Council wants to keep playing this broken record. They now have 5 more charges against him–i.e. the same old stuff about treating within the reference range.  MANY patients have been treated with their lab test in range and report their lives changed!!

Says Sheila Turner of TPA-UK stated today, Feb. 18th, “Dr Skinner has 3 working days to get his defence together, he was away last week, and came back yesterday to find a big bundle in his post from the General Medical Council. The following is what I posted to all of my members yesterday. We have heard nothing more from the GMC or from Gordon’s legal team as we are now into the weekend, so will have to wait until Monday morning. As much as I know I have written below. See the last day of the GMC hearing and the Panel’s decision at that time. It just beggars belief. here http://www.tpa-uk.org.uk/skinner_hearing_transcripts2.php .”

YOU CAN HELP!!  Use the following to email short messages of support about being treated successfully with a lab result within the so-called normal range:  IOPTeam@gmc-uk.org with Dr. Skinner’s name and reference, C1-462487326 by this Tues 21st. The hearing (with hardly any notice) is on Wednesday 22nd Feb.

5 replies

The pitiful challenges even a Good Doctor faces….ignorance, stupidity, resistance. Read this!

(Reading this via email notification?  Remember to leave a comment RIGHT on the blog post by clicking on the title of this blog post in your email.)

As thyroid patients, we are continually seeking doctors who understand successful patient experience. It’s not always easy.  So when we do find a good doctor, we’re ecstatic. But little do we know the challenges a good doctor faces!  The following was sent to me by a progressive, open-minded MD, of whose name I have removed to protect him from his own medical board. Be appalled and amazed. I was.

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Janie, it is not infrequent that we are sent messages like this from Pharmacy Benefits Managers. Here is a typical letter with my reply.

Considerations for Your Review

1. Drug Safety Consideration: ARMOUR THYROID Use in Seniors  Our claims record suggests that your older patient is receiving ARMOUR THYROID. Thyroid hormones should be dosed cautiously in seniors due to a potential risk of cardiac effects. Desiccated thyroid products contain variable amounts of T3. T4 and other iodothyronine compounds. Because older patients have a high prevalence of occult
cardiac disease, the Beers criteria generally recommend transition to a safer alternative (e.g.. agents like levothyroxine with more standardized hormone content). Please consider the potential risks versus benefits of therapy for your patient.

Reference(s):
1. Thyroid Agents. In: McEvoy GK, ed. AHFS: Drug Information. Bethesda, MD: American Society of Health-System Pharmacists; 2008:Sec 68:36.04.
2. Pick DM et al. Updating the Beers Criteria for Potentially Inappropriate Medication Use in Older Adults. Archives of Internal Medicine. 2003; 163:2716-2724.
3. Semla TP et al. Geriatric Dosage Handbook. 13th ed. Hudson, OH: Lexi-Comp; 2007.

(And this brilliant doctor’s reply:)

Dear  xxxxxxx

Re: Armour Thyroid Products

I invite your attention to the P.I. (product information) in the PDR on levothyroxine (Synthroid). I quote:  PRECAUTIONS “Patients with underlying cardiovascular disease–Exercise caution when administering levothyroxine to patients with cardiovascular disorders and to the elderly in whom there is an increased risk of occult cardiac disease.”

DOSAGE AND ADMINISTRATION

“Caution should be exercised when administering SYNTHROID to patients with underlying cardiovascular disease, to the elderly, and to those with concomitant adrenal insufficiency (see PRECAUTIONS).”

I read your statement that says, “Desiccated thyroid products contain variable amounts of T3 and T4 and other idothyronine compounds.”  Forest Pharmaceuticals has stated their product is standardized as published in the PDR: “ One (1) grain or 60 mg of Armour contains by assay 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3).” I do not ever remember Armour Thyroid ever being recalled for stability or lack of standardization.

However, Synthroid and the other forms of levothyroxine have had significant problems.

SYNTHROID AND OTHER T4 PRODUCTS were subject to FDA NOTICE in the FEDERAL REGISTER: AUGUST 14, 1997 (VOL 62, NUMBER 157). These were the drugs that were not well standardized and were not stable. I quote from the report: “Some of the problems reported were the result of switching brands. However, other adverse events occurred when patients received a refill of a product on which they had been previously stable, indicating a lack of consistency in stability, potency, and bioavailability between different lots of tablets from the same manufacturer.”

Thank you for caring for the health of the patients receiving medications from your company. I request that you check your facts fully before issuing such flyers.

Respectfully,

xxxxxxxxx, M.D.

Cc: FOREST PHARMACEUTICALS

BRAVO TO THIS DOCTOR in the face of complete ignorance!!

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STTM HAS HIRED A PUBLICIST and YOUR HELP IS NEEDED!

Do you value what Stop the Thyroid Madness has given you??  Something has to be done to reach millions of individuals still lingering without a diagnosis due to the TSH, or suffering due to being on T4-only meds! You and I run into them DAILY and don’t even know it!  Or we have many family members in the TSH/T4 category. And the media does NOTHING about this scandal.  STTM has hired a publicist, and you can read about it here. But I can’t do this alone. If you value Stop the Thyroid Madness, please considering helping.

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TPA (Thyroid Patient Advocacy) STILL NEEDS YOU TO REGISTER 

Have you registered for the Counterexamples to T4-only?  So far, 1437 have, and Sheila Turner is determined to get that number to over 2000 at least. There were 900 participants on those flawed studies showing that T4/T3 combination worked no better than T4-only, and we have got to prove our point that this is wrong.  All you have to do is answer 3 very short questions.  http://www.tpa-uk.org.uk/register_of_counterexamples.php

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10 replies