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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

Taking your temp, Selenium and RT3, TPA’s Autumn Newsletter, and HealthcheckUSA’s discount to STTM readers

NOTE: though this post was originally written in 2011, it can still contain relevant information for you today to consider, or do further research on. 

(Photo graphic by thyroid patient Sam Aliyev of Azerbaijan, Baku city.)

TAKING YOUR TEMPERATURE CORRECTLY?? Possibly not.

Thanks to Dr. Broda Barnes, informed thyroid patients know the importance of taking one’s temperature, especially just before we get out of bed in the morning. According to Barnes, we can suspect a thyroid problem if that temp is below 97.8. Conversely, healthy thyroid function (or adequate treatment) would  put our before-rising temp from 97.8 to 98.2. (Menstruating females would need to be aware of higher temps right after ovulation.).

Today, we favor the mercury thermometer over digitals for accuracy. But are we using the mercury thermometer correctly? Maybe not.

A discussion between thyroid patients recently underscored the need to leave it in the mouth longer than the 5 minutes we thought was adequate. Thyroid patient Jennifer states: At 5 minutes it read 97.6, at 10 minutes it read 97.8 and at 15 minutes it read 98 degrees. After that, it stayed 98 degrees.  We then discussed the fact that manipulating the muscle in the back of throat could have caused the final temp. But her experiment, as well as others, underscored that we need to be holding that mercury thermometer in our mouths no less than five minutes, and ten is probably better.

DOES SELENIUM REALLY CAUSE A RISE IN REVERSE T3 (RT3)?

The above statement about selenium causing excess RT3 has oft been repeated from group to group for a few years. But it may be very wrong.

For example, this study shows selenium did not cause a rise in RT3, and in fact, lowered  it. Here is one which shows LOW levels of selenium can result in increased RT3. This medical book states that though RT3 comes from T4, it also concludes that  low selenium increases RT3.

In other words,  though the enzymes that convert T4 to T3,  and convert T4 to RT3, are selenium dependent to do their job, that doesn’t mean that selenium is going to increase your RT3.  Bottom line, many thyroid patients love selenium, especially with its power to lower Hashimoto’s antibodies, and being anti-cancer. Suggested levels are no more than 400 mcg.

TPA’s AUTUMN NEWSLETTER IS OUT–many good articles!

TPA stands for Thyroid Patient Advocacy, and is a UK charity organization started by Sheila Turner. Check out the articles below in the latest newsletter.

Page 5: The Big Question – Is There an Anti-T3 Conspiracy.  Eric Prichard critically questions why those in Endocrinology need to cite numerous anti-T3 studies, in spite of many other studies which reveal the activeness and superiority of T3. Is the UK and other dark age countries ever going to get it?

Page 9:  Why I Believe T3 Should Be the Very Last Treatment that Thyroid Patients Consider.  Don’t let UK’s Paul Robinson’s title fool you. He believes in the efficacy of T3, but underscores why it can be complex to dose with just T3. Especially compelling are what follows Paul’s article, titled MEMBERS SUCCESS STORY.  Story 1 is about an individual who, when dosing T3 in the early morning hours, was able to get off all adrenal meds. Story 2 is about a gal’s successful transition from T4 to T3.

Page 15:  Thyroid Patients Have Come a Long Way, Baby….But We Still Have a Way to Go!  Though there are now numerous patient groups on the net and many lives have changed, Janie Bowthorpe (yes, me) explains how many doctors still have a long way to go in understanding how T4 and TSH fail patients, just as desiccated thyroid or T3 have turned miserable lives around.

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Sock it to ’em, Sheila of TPA-UK! She has asked some STRONG questions!

(Side note: I feel so stupid. If you have signed up to receive notification of STTM’s blog posts (see signup on left below links), I have inadvertently failed to check a particular box for the emails to go out. I won’t make that mistake again. See the two posts below, which you weren’t notified about when they came out. )

I recently chatted with Sheila Turner, a thyroid patient advocate in the UK who runs the website Thyroid Patient Advocacy–United Kingdom.

And she has become absolutely disgusted at what is happening in the UK–disgusted enough to stop being polite and to ask direct and pointed questions on the home page of her TPA-UK website.

What spurred her tough new stand?  Says Sheila, “The RCP (Royal College of Physicians), BTA (British Thyroid Association) et al are doing everything they can to boycott all T3 containing products and their latest ‘Statement’ on the diagnosis and management of primary hypothyroidism is banning general practitioners from prescribing T3 at all.“.

And, explains Sheila, it’s gotten to the point where most any General Practitioner is completely afraid to prescribe T3 or any T3-containing product like natural desiccated thyroid for fear of being reported. “The ONLY people allowed to recommend that T3 be prescribed are “accredited endocrinologists”, says Sheila. (And how many patients have experienced how close minded Endo’s can be towards desiccated thyroid.)

And here are her brilliant, in-your-face questions with links, which are pertinent for ALL of us, whether in the UK or not:

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

I appreciate the tough stand Sheila is taking. We HAVE to take a strong stand in light of the worldwide ignorance about 60 years of patient suffering on T4 meds like Synthroid, Eltroxin et al, about better treatment with natural desiccated thyroid and T3 products, and about the lousy TSH lab test!

In fact, in light of practically NO mass media attention to this huge worldwide thyroid treatment scandal, we have to shout it wherever we can and hope that some WISE reporter or media personality gets this and will shine a media light at the idiocy going on out there towards thyroid patients. Stop the Thyroid Madness!â„¢

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Two topics: Let’s talk iodine, plus a UK lab will analyze Armour, says Sheila of TPA-UK!

iodine_atomI confess that I hated my Chemistry class in high school, even if Mr. Bowen tried to make it interesting and favored the girls over the boys in class.  But lo and behold, one of those elements on the Periodic Table ended up having a significant role in all or our lives as thyroid patients: iodine.

Iodine can be found in every inch your body, but is especially prevalent in your thyroid, which makes it an interesting element for those of us with thyroid disease.  The active thyroid hormone T3 (triiodothyronine) is made up of three iodine molecules, and the storage hormone T4 (thyroxine) has four iodine molecules. In fact, without proper amounts of iodine, your thyroid wouldn’t even function well.

An optimal amount of iodine has also been shown to improve breast health, provide cancer protection, remove toxins like Bromide, fluoride, mercury etc…and in some cases, has helped thyroid patients either lower their dose, or even get off thyroid treatment. Thyroid patient Diana tells of getting off thyroid treatment due to iodine on the Stories of Others page.

***This Thursday evening on the Thyroid Patient Community Call on TalkShoe, we’ll have guest Stephanie Buist, owner of the Yahoo group Iodine and a 9-year thyroid cancer survivor who strongly feels iodine has been a huge factor.   We’ll explore how much iodine a person needs, the loading loading test, the best sources of iodine supplementation, whether you need iodine, as well as controversies with iodine use, including Hashimotos disease or bad reactions.  Times for the call are 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern. You can listen right on your computer, or call to talk directly to Stephanie and Janie. Join us!

*******************

ArmourtabletsUGH-1Sheila Turner of TPA-UK  (Thyroid Patient Advocacy-UK www.tpa-uk.org.uk) is starting the ball rolling on something very interesting:  they have contacted a lab in the UK who will do a qualitative analysis of the old Armour vs. the new reformulated Armour to get a breakdown of the ingredients, and potentially give us an idea WHAT is causing thyroid patients to have a return of their hypothyroid symptoms since Forest reformulated Armour in 2009.

However, says Sheila, this will cost in the region of £600 to £700 (approximately $1100).  Says Sheila, “If there are enough patients who are willing and able to help raise the funding required by giving whatever we can afford, we could finally get the answer as to which changes have been made in the new formula and whether this includes changes in the active (as some have suggested) and the inactive ingredients and put this baby to rest once and for all.”

You can contact Sheila at the above website and make a pledge.  As I write this, they have already have £100 pledged.

UPDATE: Stephanie above has agree to be the ‘Pledge and Money Collector’ for the lab work needed to analyze the old vs new Armour . She can be contacted at ladybugsandbees@sbcglobal.net

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An open letter to Mary Shomon

shakinghands2Hi Mary.

You know, I really don’t think this is a time for us to be separate, Mary, in our advocacies.   Seven years ago, I went a different direction that I felt was important, and still strongly do, as an activist.  That will continue because I believe in what I am doing. You don’t have to agree with my stance, but we can make the choice to work together in what is common between us–supporting the use of desiccated thyroid and helping others with the shortage.

As I see it, Mary, we each have a wonderful legacy. You will always be appreciated for your work as much as many appreciate my work. That will never be taken away.

So why not be united in this fight, Mary, working together to support patients during this shortage.  Thyroid patients need us.

Janie

13 replies