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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/

The outcome of this can affect YOU, as a thyroid patient, no matter WHERE you live!

Screen Shot 2013-02-10 at 10.22.58 AMWhat affects your neighbor can affect you.

This is why you need to be aware of, and show support for, what is going on in Scotland. Namely, three Scottish residents….Sandra Whyte, Marian Dyer and Lorraine Cleaver…have submitted a petition to the Scottish parliament as of last week in defense of better thyroid diagnosis and treatment.

ThyroidChange has provided a video about this hearing, and it’s moving. You’ll hear mention of the following:

  1. the conversion failure of T4-only treatment, leaving these women suffering with low energy, high cholesterol or blood pressure, weight gain, anxiety, fibromyalgia joint pain, suicidal tendencies or more
  2. issues related to poor cortisol levels
  3. problems with testing only the TSH and T4 lab tests
  4. stress put on marriages because of these failures
  5. how the diagnosis of Chronic Fatigue Syndrome and Fibromyalgia seem to have risen only after the TSH came into being along with thyroxine treatment

A mind boggling and brilliant comment came from Lorraine about the National Health Service (NHS) listing of medicines, which she stated includes 82 for Diabetes, 47 for depression, 45 for acne, 16 for athletes foot, 3 for hiccups, 3 for dandruff….AND ONE FOR THYROID. “There’s something very wrong” says Lorraine, when T4 is the only medicine listed (in spite of the availability of natural desiccated thyroid, also called thyroid extract, or T3.)

When asked for evidence as to where the problem is with General Practitioners (GPs), it was mentioned there are no guidelines for the treatment and diagnosis of hypothyroidism, and everyone defers to the Royal College of Physicians guidelines, which is inadequate and does not provide for problems with T4-only or recommend T3 or thyroid extract (natural desiccated thyroid).

Sandra asks “Why are we keeping people ill?“. She mentions that patients are told it’s in their heads, have “lazyitis”, and antidepressants are prescribed everywhere. Lorraine sadly mentions being told by doctors that her problems are not thyroid related (when she knows they are, and so do millions of us).

Mention was made of a Swedish study showing that 70% of thyroxine-treated patients are not symptom-free, going against the idea that taking one little thyroxine pill is going to solve the problem.

Lorraine mentioned that even doctors, like a particular Endocrinologist she has seen, feel ham-strung themselves (by the pressures put on them from their fellow professionals to prescribe T4-only).

BRAVO TO THESE THREE LADIES FOR BRINGING THIS TO THEIR PARLIAMENT! And I can’t help but believe that if we see the right outcome in Scotland about this, it will play a role in spreading throughout the world. Have your own T4-only nightmare to share? You can send it to the Scottish parliament to back up what these ladies have already one, here: petitions@scottish.parliament.uk

And from Janie: we see many T4-only patients who do seem to convert well, yet still have issues related to a poor treatment. I was one. There are many others. Additionally, even those who convert well eventually find themselves with problems as they get older. T4-only treatment is not a pretty picture.

For further reading:

To see research which proves what we already know as thyroid patients, go here.

To see patient-recorded symptoms from being on T4-only, go here.