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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

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

“Are Endocrinologists just DETERMINED to be stupid?” ask some thyroid patients.

(Though this was originally written in 2011, it has been updated to the present day and time. Enjoy!)

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Will it ever end?

A very troubling article

On March 21st, 2011, from the Endocrine Today website, comes the article Hypothyroidism only partially responsible for decreased quality of life in Hashimoto’s thyroiditis. And this article has so many troubling comments and wording that it has made some thyroid patients question whether their Endocrinologist can really help then.

For example, the article notes that there seems to be a “higher symptom load and the lower quality-of-life scores in the group of patients with increased anti-TPO levels”, which can include “Chronic fatigue, dry hair, dysphagia, irritability and nervousness”.

Yet, the article states, these patients have

    • “normal thyroid function”
    • are “euthyroid”
    • have an “ideal biochemical response to thyroid hormone replacement therapy.”.

Are you kidding me, say many thyroid patients???  Euthyroid technically means “the state of having normal thyroid gland function.” Yet, chronic fatigue, dry hair, dysphagia (difficulty swallowing), irritability and nervousness are far from normal, besides being classic hypothyroid or Hashimotos symptoms, as well as having potential adrenal issues from having poorly treated hypothyroidism!

And of course, most informed thyroid patients know that ” euthyroid” and “normal” and “ideal” in the mind of poorly-trained doctors refer to an ink spot on a piece of paper called the TSH lab result and NOT cellular receipt and/or use of thyroid hormones. The TSH is a pituitary hormone, not a thyroid hormone. The TSH lab test has failed patients for decades, just as has T4-only like Synthroid, levothyroxine, Eltroxine, etc!

Also mentioned is a particular Austrian study involving 426 women aged 19 years or older who were undergoing surgery for benign thyroid disease. When patients come on thyroid groups and report Endocrinologists who want to remove their thyroids simply because they have the treatable Hashimotos disease, you have to wonder why 426 women were having surgery for “benign thyroid disease”…

But in spite of all the above, there is hope!

Hashimoto’s patients have become wise and informed. To read all the ways patients have learned to adequately treat Hashimotos, go here.

To find out if you now have an adrenal problem, go here. This is important to know because it can be problematic in raising NDT if you have low cortisol, or high cortisol. Thus, the need to treat it first.

To find a good doctor to work with, and/or teach while you are working with, go here.

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Do you look back and wonder about the fact that your thyroid was taken out?  Let us hear your story by commenting on this post. What has been your experience with an Endocrinologist? Tell us about it.

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** Have you Liked the STTM Facebook page? It provides daily information and inspiration just for thyroid patients!

** Check out recommended patients groups on the internet.

** Stop the Thyroid Madness is available in TWO different books! //www.stopthethyroidmadness.com/comparing-the-sttm-books/

26 replies

Electrolytes, Stress, A1C and diabetes, FDA, Las Vegas and more!

I’m amazed at lingering problems since being on T4: Though I’ve been on desiccated thyroid for 8 years, and do quite well since correcting low ferritin twice thanks to the lousy T4-only treatment, I discovered that my RBC magnesium is low, as I suspect my RBC potassium is, as well–all probably down due to chronic economic stress from this lousy economy.  But it underscores that we all have to be vigilant and not hesitate to periodically get minerals and electrolytes tested, especially RBC (Red Blood Cells), as well as anything else your doctor recommends, or you read about. Labs you can do yourself are here, then share with your doc. You can read about potassium issues here.

Under stress with the economy or the holidays? When stressed, I love and use the herb Ashwagandha. It’s been used for thousands of years in Ayurvedic healing, helping your immune system and stress response.  High dose B-vitamins are said to help counter anxiety and depression. Vitamin C is huge for your adrenals like the B’s, and has been known for years to counter the effects of stress. In fact, stress depletes it, so they state you are wise to raise it when under stress.  (Is Vit. C why I never got adrenal fatigue when I deserved to get it? I always took a lot.) Also recommended include the herbs Valerian Root, Marshmallow, Lemon Balm, Chamomile tea, Passionflower, and more. But first do research on any herbs and talk to your doc.

Hypothyroidism can falsely raise your A1C, implying you have diabetes even with normal blood glucose. Just got word from thyroid/adrenal patient Jackie about this study concerning the A1C test, here.  In turn, those on thyroid treatment saw their A1C fall.  We don’t know what the thyroid meds used were, but imagine even better results if on desiccated thyroid, which many patients report does a much better job than T4, especially in the presence of optimal ferritin/iron and adrenal function.

Don’t be complacent: register yourself: Sheila of TPA-UK is working to create a register of patients who have had continuing hypothyroid symptoms while on T4.  After she creates this register of patients, which right now only involves a couple of questions, she will create the a  Worldwide Register of Counterexamples to Levothyroxine (T4)-Only Therapy for. Register yourself here. This will also run alongside Dr. Gordon Skinner’s Worldwide Register, which you can also be a part of here.

Listen to a new video produced by the FDA about drug shortages here. I wonder what our own 2009 shortages with Armour and Naturethroid played a role in this video? Wonder if the FDA will ever admit that they were partly to blame for this shortage by shutting down the 2009 generics? Has anything been left out of this video?

No, Las Vegas Review-Journal. Hypo get undiagnosed because of the lousy TSH, not “subtle” symptoms. Yes, this journal did a recent article, quoting AACE as stating half of thyroid patients remain undiagnosed. The article then states it’s probably due to symptoms being very “subtle” or “very similar to other health problems such as anemia, fatigue, depression, slow metabolism and a wide array of other diseases.”  GROAN. It would be nice if these articles on hypo got it straight: hypo remains undiagnosed because of the lousy TSH lab test, which too many Endocrinologists worship, and because they fail to noticed the obvious symptoms of a hypothyroid state, which include anemia, fatigue, depression, slow metabolism and a wide array of other diseases. i.e. those ARE the symptoms of hypo, not “other health problems”.  When oh when will reporters DARE to state what patients have learned??  (Oh, and guess who included a link to this article in their email Thyroid Weekly? The Endocrinologist-loving, TSH-loving American Thyroid Association.)

Have a great holiday season!!

Janie

P.S. HO! HO! HO! The publishing company will send a book for you to a friend or loved one for a Christmas present. Go here.

15 replies