(This post garnered a lot of attention, up to FIFTY comments just a few hours after it went up. People are very interested in sharing their experiences in coping with the shortages! See below and add your own.)

This year will go down in history as shockingly miserable for enlightened thyroid patients on natural desiccated thyroid.

First came a reformulation in the most popular brand–Armour by Forest Labs. Patients worldwide in groups and forums reported a serious return of their hypothyroid symptoms on this product. A huge disappointment.

Second came the production shutdown of the two generic makers of desiccated thyroid: Time Caps Labs and Major Pharmaceuticals. It’s the first step in the FDA’s compliance plan to corral all grandfathered-in drugs (drugs already in existence when the the FDA was created in 1938) and make them each prove the efficacy and safety of their medication via very expensive clinical trials.  i.e. over 110 years of safe and effective use of desiccated thyroid is not enough for the FDA?? We are still waiting to see the outcome of that plan with RLC  and Forest Labs.–the two who were actually in existence before 1938.

Third came demand being greater than supply and shortages. Because of informative patient websites like Stop the Thyroid Madness,  Sheila’s TPA-UK, Lyn’s ThyroidUK, Stephanie’s Natural Thyroid Choices, some areas of about.com (and other good websites I don’t mean to miss here), plus many fine patient forums and groups,  patients found out why they had continuing symptoms on T4 thyroxine, and demand for natural desiccated thyroid grew exponentially.

STTM then created a list of options for all thyroid patients until the shortages resolved themselves, and also created CDT (Coalition for Desiccated Thyroid) where patients could discuss alternatives in a supportive and factual atmosphere.

And we’ve seen some interesting experiences and comments:

The new Armour: One grain tabs started to appear on some pharmacy shelves the past month.  Other pharmacies have still been waiting.  Many patients appear to have switched to other alternatives, though. One gal still on it feels she is finding success by adding T3 to the amount of new Armour she is on.  Time will tell if patients can ever find success with the newly formulated Armour, and most feel it’s a huge loss.

Naturethroid and Westhroid: Patients reporting on their switch to either of RLC Lab’s two identical products report doing well, having to raise it slightly or lower it slightly, or just not liking them at all. Others have had a hard time finding it on their pharmacy shelves, but have been seeing some appear in the last few weeks.

Erfa’s Thyroid from Canada: When it became clear that the FDA was allowing this excellent product to be shipped to patients, many switched and had their prescriptions faxed to a Canadian pharmacy. Prices at many of those pharmacy websites were doubled after prescriptions started to come in from the US. Most patient who stuck with it seem to love it, reporting you can do it sublingually, as well. A few haven’t been impressed, but were finding their former success by raising it.

Compounded desiccated thyroid: In spite of being a more expensive option, some patients found success with this. Others learned they preferred the filler to be Acidophiles.  If not the latter, Microcrystalline Cellulose was preferred over Methyl Cellulose–the latter which appeared to lessen the effectiveness of the compounded thyroid.

Synthetic T4 and Synthetic T3: some patients switched back to the synthetic combination, but many report that it hasn’t been as effective as desiccated thyroid was.

Other options: Patients moved to OTC products like Nutri-Meds, etc, which can be much weaker. Others sought desiccated thyroid from other countries and have found success.

So I’d like to hear from all of you.   Did you go back to synthetic T4?  What desiccated thyroid did you switch to? What worked and why? What didn’t work for you and why?  What product do you hope to switch to once you run out of your current meds?

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

*Want to be infor­med of these ‘fringe web­site’ blog posts?  Curious what’s on radi­cal Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales! Spread the word!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thy­roid treat­ment during the current shor­ta­ges due to demand being grea­ter than supply? Go here.

I 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!

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

Sheila 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

*Want to be infor­med of these ‘fringe web­site’ blog posts?   Curious what’s on radi­cal Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! I love sales!

* Pre­fer STTM in book form with more detail? You can read about it here.

*Need options for thyroid treatment during the current shortages. Go here.

Yet, she just knew that wasn’t correct.

So she took some of her own intestinal tissue to her Biomedical Problems class, and voila…she diagnosed her own problem:  granuloma, and specifically, Crohn’s disease, an inflammation of her intestines.

Sound familiar??

Yup, thyroid patients have had to do the exact same thing–self-diagnose– for almost ten years because of continuing symptoms of hypothyroidism which doctors have routinely dismissed, pooh-poohed or blamed on something else.  It’s all been a horrific, wide-reaching and damaging 50 year medical scandal by the medical establishment upon thyroid patients.

And why has this calamity occurred? Because doctors have always been hoodwinked by their medical school training, continuing education and Big-Pharma-financed-research in believing that T4-only thyroxine medications like Synthroid, Levoxyl, Levothyroxine, Eltroxin, et. al. were from God Almighty, and the TSH lab test was just as holy.

And thanks to thyroid patients around the world who had the gall to use the internet and join patient groups, we figured out it’s all because those medications and labwork have not worked, and what has worked. Additionally, it was patients who discovered they had adrenal fatigue and/or low ferritin and how to treat it, and patients who have succeeded in beginning a wave of change around the world in the treatment and diagnosis of hypothyroidism (except for the UK, who has gone backwards to the dark ages).

You can read Jessica’s story first reported in the Sammamish Reporter,  and only recently reported to a wider audience in the Bay Area News newspaper. She also spoke to a CNN affiliate.

Thanks to Kem on NTH for informing me of this news.

P.S. Do ya think that any newspapers or major news outlets like CNN are going to finally get what a huge story thyroid patients have given them?? We’re still waiting……

*Want to be informed of Janie’s blog posts? Curious what’s on her mind? Just use the Notification link to the bottom left of the links.

And it’s not just in the US with individuals like Oprah, fitness guru Jillian Michaels, Sex and the City’s Kim Cattrall, George and Barbara Bush, Kelly Osbourne and others.  A recent article in the Daily Mail-UK highlights the saga of  Clare Balding, the BBC TV sports presenter in the UK whose thyroid was gladly removed due to a malignant tumor.

Even the gal who wrote the well-written article about Clare, Pippa Jolly, reports having gone through the same removal 13 years previous due to an extreme case of Hashimotos and a nodule pressing against her trachea.

But within the informative and hopeful tone of the article are a few Rodney Dangerfield thuds of the continuing SCANDAL and idiocy of a particular thyroid treatment which even the most innocent of article writers can be fooled.

Thud #1: The very first sentence of the article says: Some good news for Clare Balding, the BBC TV sports presenter, is that her recent operation to remove her cancerous thyroid gland – a thyroidectomy – should be the end of the matter.

End of the matter? Only if she had been put on desiccated thyroid like Naturethroid, et al. Because it appears she’s on the delightfully enchanting synthetic “thyroxine“, the darling of most UK doctors and which serves to leave almost everyone with their own brand and intensity of continuing hypothyroid symptoms.  You can listen to my audio here about T4.

Thud #2: Diagnostic rates are on the increase, says Professor Monson, as thyroid tests are now done routinely at GP surgeries. ‘As a result there is a higher detection rate and the disease can be tackled earlier and if necessary followed up by surgery.

Right. Those increasing diagnostic rates, some which are based on the lousy TSH lab test, are overridingly catching someone’s hypothyroid state years after it started, which leaves a certain percentage with the misery of adrenal insufficiency and host of other problems from being undiagnosed so long.  And if one is treated after surgery based on the same holy TSH, you will only continue to have your brand of continuing symptoms. You can listen to my audio on the TSH here.

Thud #3: If the thyroid is removed or not functioning properly, thyroxine will need to be taken in drug form for life.

You and millions of others have been hoodwinked into thinking it’s thyroxine you will need the rest of your life, aka Eltroxine, Synthroid, or levothyroxine,  et al.  But those T4 meds force you to depend on conversion alone, a process not well done in many, and you miss out on what natural desiccated thyroid would be giving you as a much wiser treatment–exactly what your own thyroid gives: direct T4, T3, T2, T1 and calcitonin. Or even at the VERY least, giving yourself synthetic T4 with synthetic T3.

Thud #4: Now I have to have my hormone levels checked every three months and make sure I take my medication, but otherwise I feel fine.

I completely believe Pippa when she says she feels fine. But I want to warn her:  some CAN feel fine on a T4-only medication, but eventually and especially as she ages,  she’s going to have to watch out for those pesky little demons of being on an inferior, inadequate medication, which can include rising cholesterol, chronic low-grade depression, rising high blood pressure, or a host of other symptoms which are individual to each person on thyroxine.

Here’s hoping Clare and Pippa join the growing body of patients all over the world whose lives are being changed thanks to natural desiccated thyroid.

*Want to be informed of these blog posts? Curious what I’m ranting about now? Use the Notifications on the lower left of the links.

I had been wondering what the heck was going on with thyroid patients in the UK after the Royal College of Physicians (RCP) came out with their dim-witted, cuckoo’s- nest February 6th guideline stating that 1) thyroxine was the only medication needed for hypothyroidism, 2) “natural” medications were dangerous and 3) the only labs needed are the TSH and T4.

Equally a part of this B-grade horror movie is the three-stooges stand taken by the British Thyroid Association (BTA).

And UK-TPA thyroid patient advocate Sheila Turner began to go through her own hell when her Armour was taken away, which you can read about in the February 20th blog post here.

And suddenly, I get an email from Sheila, informing me that the RCP is as stupid as they were three months ago.

Sheila states: This is absolutely unbelievable that out of the hundreds of references we sent to the Royal College of Physicians to show their guideline to be flawed, they have taken no account of one single one of them. They are publishing their previous guidance without one since change. The world has gone mad.

Dear Sheila,

Further to my email of 6 April, the comments and materials received by the College have been reviewed. This position statement or guidance (not a guideline) was produced on behalf of the Royal College of Physicians, in particular its Patient and Carer Network and the Joint Specialty Committee for Endocrinology and Diabetes; the Association for Clinical Biochemistry; the Society for Endocrinology; the British Thyroid Association; the British Thyroid Foundation Patient Support Group and the British Society of Paediatric Endocrinology and Diabetes and is endorsed by The Royal College of General Practitioners.

The President has asked me to let you know that this review has not resulted in any changes to that statement.  It should be noted that it is about the treatment of primary hypothyroidism and does not preclude other treatments for exceptional cases by specialist endocrinologists who can make clear to patients any associated risks.

References supporting the statement are listed below.

Yours sincerely,

Catharine Perry
Administrator

•   Diagnosis and treatment of primary hypothyroidism. BMJ 2009;338:b725
•   Vaidya B, Pearce S. A Clinical Review of the management of hypothyroidism in adults. BMJ 2008;337:a801. This contains references for 35 articles and states that Armour thyroid is of no proved additional benefit to levothyroxine.
• The Lancet Volume 363, Issue 9411, Pages 793 – 803, 6 March 2004.  This covers the history, epidemiology, pathophysiology, and clinical diagnosis and management of hypothyroidism and is written by Caroline GP Roberts and Paul Ladenson of Johns Hopkins University School of Medicine, Baltimore, USA.  This review, which references 164 clinical articles, states that the treatment of choice for hypothyroidism is levothyroxine sodium (thyroxine) and does not refer to Armour thyroid.
•  Baloch Z, Carayon P, Conte-Devolx B, et al. Laboratory medicine practice guidelines. Laboratory support for the diagnosis and monitoring of thyroid disease.Thyroid 2003;13:3-126.
•  Association of Clinical Biochemists BTA, British Thyroid Foundation. UK Guidelines for the use of thyroid function tests. http://acb.org.uk/docs/tftguidelinefinal.pdf
•  Surks MI. Ortiz E, Daniels GH, et al. Subclinical thyroid disease: scientific review and guidelines for diagnosis and management. 2004;291:228-238.

And as your peruse the six references above which they use to defend their tunnel-visioned, moronic position, you realize that YOU, YOUR WORDS, AND YOUR POSITIVE-OUTCOME EXPERIENCE ON DESICCATED THYROID IS ABOUT AS IMPORTANT TO MOST PHYSICIANS & ORGANIZATIONS IN THE UK AS IS DIRT ON THE BOTTOM OF A RUSTED BUCKET IN THE MIDDLE OF A EMPTY FIELD IN NOWHERE. Yup.

Or as Harold Shipman stated about the RCP’s guidelines: What a brilliant wheeze.

*See below on the potential importance of potassium in your health and well-being. And on the May 7th post about the party being over with Forest Pharmaceuticals, comments continue to come in about experiences with the “new” Armour. Have you read the STTM book? Patients are stating they like it even better than this HUGE website. lol.

*Want to be informed of my blog posts? Curious what’s on my mind? Use the Notification on the lower left of the links.

It’s promoted as safe, and it works by limiting the absorption of fats from what you eat, which in turn reduces your intake of calories.  (What has always turned me off about Alli or Orlistat is that is creates oily and loose stools. Bleck. )

Medscape just today reported about an FDA warning: the Use of orlistat may decrease L-thyroxine (T4) absorption and lead to hypothyroidism. Clinicians are advised to administer levothyroxine and orlistat at least 4 hours apart…

Oh jolly. So now we have the FDA giving a warning about Alli causing problems with “thyroxine” use,  yet it’s the VERY “thyroxine” use that causes a certain large percentage of those using Alli to need to use it in the first place. You can see that reality in the questions about the hypo problem on the Alli forum.  i.e They are all on thyroxine!

Hitting my head against the wall.

P.S. Reported in Endocrine Today and from just a month ago, and article titled Hypothyroid patients required increased levothyroxine during pregnancy.  Zombie Endocrinologists. Zombies. That’s like having an article titled Sick patients need more blood-letting. i.e LEVOTHYROXINE SUCKS AND SHOULD BE IN THE PAST just as much as blood-letting.  WAKE UP ENDOCRINOLOGISTS!! WAKE UP!!

*Check out patient response to the newly formulated Armour below, and add your own comments.

Why? Well look at it this way. This is a man of stature. He is an MD, an Adjunct Professor of Medicine, the director of Public Citizen’s health research group which promotes drug safety and public health, and editor of the newsletter Worst Pills, Best Pills, and since August of  ‘08, a member of the Drug Safety Committee.  He also has a resume a mile long.

Yet in spite of his seemingly caring activism for our health and well-being, and his immense experience and education, he is clearly and completely off-base about Armour and other desiccated thyroid prescription drugs.

For example, as as editor of the Worst Pills, Best Pills newsletter,  Wolfe declared Armour desiccated thyroid as a “Do Not Use” product because it is not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available”. (Gee, funny how our experiences are completely otherwise….)

Then in the May 2003 issue (of which you have to have a paid prescription to read), he wrote an article titled  “Do Not Use! Natural or Desiccated Thyroid (ARMOUR THYROID) For Thyroid Hormone Replacement Therapy.” In that article, the clueless Wolfe stated that he supported The American Thyroid Association’s statement “There is no evidence that desiccated thyroid, a biological preparation, has any advantage over synthetic thyroxine.” (I guess millions of us and our improved heartrate, stamina, cholesterol, depression and more…aren’t evidence?)

He then proposes that Armour is mostly prescribed for weight loss, is a niche market for the unscrupulous, and concludes with “if you are offered natural thyroid hormone replacement treatment for any reason, this is a red flag and you should get a second opinion.” In a letter to consumers, Wolfe and Public Citizen state that that T3 is only needed from conversion and is predictably found from conversion, that the T2 and T1 also found in desiccated thyroid has essentially no activity, that desiccated thyroid is an unpredictable mixture, that is has no predictable biological activity…plus so many more complete and total inaccuracies based on “intellectual head chatter” not on observation and experience.

Thud.

Mary Shomon, in 2003, did a bang-up job trying to communicate with Wolfe, Worst Pills, Best Pills, and Public Citizen about the inaccuracies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chapters 1 and 2 in the STTM book which are enlightening those reading it all!

So we are left wondering, six years later, what his four-year appointment to this committee will mean. But let’s make a few things quite clear to contrast some of the fears going on and expressed on thyroid groups:

1) Armour is not being banned.
2) Wolfe is one of a current 9 members of this committee. Wolfe is not “the committee”.
3) Wolfe and seven others currently have voting rights. He is the only “Consumer Representative”.
4) There are still six more vacancies.
5) The committee is NOT the power. They simply make recommendations. And historically, the FDA can be slow to act on their recommendations, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medication like desiccated thyroid).

So what can you do? I challenge you to follow and act on the below, which puts our energies into communication, not feeding the ego and power of a misguided man with our overtly expressed fears as if they have actually come to pass :

1) Remember 1-5 above. Armour is fully available. Keep the facts straight, and fear-mongering down.

2) STTM has a powerful and growing page of testimonies of those who switched to desiccated thyroid.  Are you in there? If not, you need to be. This website currently has a huge audience. It’s noticed by doctors all over the world, as is the STTM book, which is YOUR book of YOUR experiences,  which is also being ordered by doctors. Use the Contact Me form at the bottom of that page.

3) Tell your experience with Synthroid or other thyroxine medications at the following websites:  www.rateadrug.com,  www.drugs.com,  www.askapatient.com They don’t include any of the desiccated thyroid meds yet, but you can tell of the negative experiences with all the T4-only drugs, including adrenal fatigue if you fell into that, and all your lingering thyroid symptoms.  The above links will take you to their Synthroid page–you can search for the other T4 meds.  Remember to mention Armour or other desiccated thyroid meds and how they have helped you!! Update: thyroid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only experience to MedWatch, the FDA’s  program for reporting problems.  You will see an Online Reporting Form to download. Don’t fail to mention which problems were removed or greatly improved when you switched to Armour, or the fact that you now have to deal with adrenal fatigue thanks to the inadequacy of T4-only treatment. You can also call 1-800-FDA-1088, but remember: your call is not to draw attention to Wolfe’s opinions! It’s to draw attention to how lousy a treatment T4 is as compared to how much better Armour has been.

5) Go to my article titled Synthroid Sucks: the Rallying Cry of Thyroid Patients vs. Clueless Doctors and comment on this article, including mentioning what Armour, Naturethroid or other desiccated thyroid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask questions and YOU can answer, mentioning YOUR experience and how much better desiccated thyroid has been. Clicking on that will take you to the Synthroid patient questions. Answer them. Be careful with links–they may not catch them at first, but will remove them if they do.  You can mention website names, tho, like Stop the Thyroid Madness.

7) Send people here to follow all these steps. Power is in numbers!

8 ) Use the following website to email or write your senators and representatives: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remember this!  Here’s a template letter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and places to write or call, add your comment to this post. Remember,  put your power in communication! LOTS of communication.

P.S. Did you know that the American Thyroid Association, in cooperation with the American Association of Endocrinologists, together support January as “Thyroid Awareness Month”…which is supported through an unrestricted grant from Abbott Laboratories, the makers of Synthroid?? Major UGH.

Namely, they express deep concern that that since hypothyroid symptoms can mimic other conditions, patients may be getting an incorrect diagnosis which could expose some patients to the harmful effects of excess thyroid hormones, while other serious conditions may go undiagnosed.

And they add: In other patients, adequate replacement with levothyroxine does not resolve symptoms, which are attributed to hypothyroidism rather than other conditions that may coexist, such as depression.

The article continues with:  Normalisation of thyroid stimulating hormone means a return to normal health in most patients with primary hypothyroidism.

In other words, what you have above are the Three Stooges of the stated beliefs of the British Thyroid Association.

Stooge stated-belief #1: “Incorrect diagnosis allow other conditions go undiagnosed” What is inferred is that there are a host of diagnoses of hypothyroidism that are incorrect. Why? Because a wise physician dared to listen to clear symptoms of hypothyroidism or use the free T3, in spite of a so-called “normal” TSH–a lab test which measures a pituitary hormone, not the cells ability to receive enough thyroid hormones.

Stooge stated-belief #2: “If adequate doses of levothyroxine do not resolve symptoms, those symptoms are due to something else.” That is akin to saying if eating 100 calories a day results in malnutrition and starvation, your malnutrition and starvation is due to something else. And one particular symptom they are referring to is depression–a classic symptom of undiagnosed and undertreated hypothyroidism in MILLIONS of individuals around the world.  And isn’t it just odd how that depression resolves itself when the patient is put on Armour and allowed to dose by the elimination of symptoms.

Stooge stated-belief #3: “A normal TSH lab result equals normal health in those treated for hypothyroidism”. Gee, funny how millions of thyroid patients around the world have had a so-called “normal” TSH lab result along with a diverse blend of continuing and CLEAR hypothyroid symptoms.  Additionally, we have a large and growing body of patients who, when they switched to Armour desiccated thyroid or other fine desiccated thyroid prescription meds,  had those symptoms resolved when they were dosed according to the free T3, improved blood pressure, strong heart beat, lowered cholesterol, and complete elimination of symptoms. Patients have learned what works!

When you understand the British Thyroid Association’s hell-bent and rigid stands against Armour desiccated thyroid, their promotion of one of the worst labs ever created to diagnose and dose by, their love affair with the most inadequate thyroid medication ever thrust onto the market by money-grubbing pharmaceuticals (levothyroxine), and their complete failure to listen to patients and recognize continuing symptoms of hypothyroidism while on synthetic T4, you come to realize how meaningful any article on hypothyroidism will be by the British Thyroid Association.

P.S.  Do ya wonder if the British Broadcasting Corporation (BBC) has the smarts to report the other side of the story??

*Want to be informed of these blog posts? Curious what’s on Janie’s mind? Just use the Notification feature on the bottom  of the links to your left.

p.s. Also see Sheila’s experience on the Feb. 20th post. Awful

Want to be informed of these blog posts? Curious what’s on Janie’s mind? Just go to the notification on the left and bottom of the links.

And right on the heels of my post below, I want to inform everyone of a REAL LIFE HORROR STORY that is happening to Sheila Turner of the UK right now. Sheila is a thyroid patient advocate who created the UK Thyroid Patient Advocacy website here.

Sheila will tell anyone who asks that she was very ill while taking levothyroxine (125 mcgs) only therapy, being wracked with back pain so severe she was unable to get out of her armchair, bed or car after sitting/laying down for a while.  She also suffered from debilitating ‘brain fog’ and short term memory, along with the usual lingering hypothyroid symptoms while on thyroxine.

Sheila states: I couldn’t tolerate levothyroxine alone because it was found I was not converting this mainly inactive hormone to the active hormone T3.  As my muscles and tissues were not getting the T3 required, my muscles in my back were going into spasm, causing the severe pain.

She then saw a private hormone specialist who started her on natural thyroid extract (Armour Thyroid, USP) and she regained her full health! It was so profound that she started the TPA-UK in 2004 to campaign for a better diagnostic and treatment protocol within the National Health System (NHS). (UK has socialized medicine.)

Fast foward to 2009.  As I wrote about below in my Feb. 14th blog post,  the UK Royal College of Physicians along with several supporting organizations recently brought out their pathetic and narrrow-minded new guidelines on the diagnosing and treatment of primary hypothyroidism.  And lo and behold, Sheila, along with about 15 other patients on Armour via the same medical consultant,  have had their Armour removed.

Says Sheila:  He and every NHS endocrinologist has been sent a letter from the President of the Royal College of Physicians, telling them they should use thyroxine ONLY as a treatment for primary hypothyroidism and that they should not recommend or prescribe Armour Thyroid and that only accredited endocrinologists should ever recommend T3 as this was rarely indicated.

Sheila has been forced to return to the synthetic treatment of levothyroxine (100 mcgs) and to it has been added 20 mcg liothyronine (T3) split twice a day. But there’s no guarantee she will be able to stay on the T3. Additionally, don’t be fooled into thinking that a combo of synthetic T4 and synthetic T3 is as good as Armour. Patients all around the world who have tried it, then switched to Armour, report far better results with the latter.

Says Sheila in a completely shocked state:  I cannot believe this is happening – I tried to question him as to the reason all the NHS endocrinologists didn’t demand the BTA produce MEDICAL EVIDENCE to show that hypothyroid sufferers ONLY ever needed T4 – he said he knew they should have produced evidence, but it seems because it has come from the RCP, his and everybody else’s’ hands were tied – they have to be seen to be doing what they are told. I got the distinct impression that if anybody rocked the boat, they would be next doctor arraigned before the GMC.

Making this real life horror story even more shocking, her medical consultant explained that the only way to find the truth as to whether Armour was a better medication or not was through clinical trials using Armour versus levothyroxine.  (i.e. patient experience all over the world revealing it works isn’t enough evidence. Give me a break). But when she pressed him into starting this, he said they would need the backing of their thyroid association – yes, the British Thyroid Association (BTA), the very group that has said that a TSH of 10 is borderline hypo. (See my Nov. 7th post)

Sheila continues: I told him they would never agree to this, and he agreed also. I told him that we did NOT NEED the British Thyroid Association to get ethical approval – and surely he could get a group of like-minded practitioners around him and do this themselves – but it would cost a great deal of money – and, again, if you are a member of BTA (and I believe most endocrinologists are) then they daren’t do a thing without their approval.

At the moment, Sheila will tell you with sadness and shock that it all seems rather surreal at the moment. She is scared for every sufferer of this disease to be forced into taking only one thyroid hormone – a synthetic storage hormone. She is  scared for herself, too.

Sheila expounds: I just sincerely hope that I can cope with the change-over to synthetics and that Armour has made my body strong enough to do this. I will make absolutely sure that my adrenals can cope with this. I feel SO VERY sorry for all of those sufferers who are being left in the care of a head in the sand endoprat , who will refuse to even give them the correct thyroid hormone their body needs.  Once again – THE NHS IS KILLING US!

This is profoundly sickening and shocking.

If you are so moved,  send this blog post (www.stopthethyroidmadness.com/blog) to anyone and everyone.  Send it to your newspaper, your radio,  talk shows, your friends, relatives, anywhere.   This should NOT go unheard of by others. We need to tell the world about this travesty.  Speak your mind about this by adding a comment.

Update: you can read Sheila’s and UK-TPA’s response here: http://www.stopthethyroidmadness.com/uk-tpas-response-to-the-rcp/

More from Sheila that gives UK patients hope: http://www.stopthethyroidmadness.com/relationship-between-the-RCP-and-MHRA/

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