And there are other countries I have felt were similar to my own as far as being modern, forward-thinking, and intelligent. The United Kingdom is one.

But there is one area in the UK that is as close to the Dark Ages as it gets: the treatment of all forms and degrees of hypothyroidism.

Because of the British Thyroid Association (BTA) and the Royal College of Physicians (RCP) ‘guidance’ on the Diagnosis and Management of Primary Hypothyroidism, most UK doctors refuse to prescribe any form of  T3, whether adding synthetic T3 to one’s T4, or using natural desiccated thyroid, either because they have fallen in line like ducks in a row, or they fear for their job.

Why? Because “overwhelming evidence supports the use of Thyroxine (T4) alone in the treatment of hypothyroidism, and we do not recommend the prescribing of additional Triiodothyronine (T3) in any presently available formulation, including natural thyroid extract, as it is inconsistent with normal physiology, has not been scientifically proven to be of any benefit to patients, and may be harmful”.

Anybody puking yet??

And, says thyroid patient advocate Sheila Turner of TPA-UK, “never has the RCP, BTA  produced any of the ‘overwhelming evidence’ they claim as supporting the use of T4-only, even though they have been asked to do so on numerous occasions. Overwhelming evidence supports the use of synthetic T4/T3 and natural thyroid extract.”

And don’t think it won’t happen where YOU live. Stupidity can abound.

What to do about it?? Answer a short questionnaire, created by Sheila and TPA-UK, which is for those with symptoms of hypothyroidism when treated with T4-only, who then tried a T3 thyroid hormone product with success. “The results of this questionnaire will enable us to create the first ‘World-wide Register of Counterexamples to Levothyroxine (T4) — only therapy’”, underscores Sheila. “The objective is to draw attention to the dire need for an urgent re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism.”

Don’t wait until stupidity and narrow-mindedness comes to where you live, as it also has in the country of Columbia, where Cynomel (T3) was retired more than 10 years now.  Give this a voice NOW to head it off at the pass.

P.S. While you are at it, sign up with Dr. Skinner’s World Thyroid Register.

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The STTM patient-to-patient website needs your help! I had to move the website to a far larger server in order to handle the immense amount of visits this site gets. And a larger server means higher yearly costs to host it. I can’t do it alone, as my money tree was killed by pine beetles and my husband won’t tell me what his Swiss Bank Account number is. So your donations can help keep Stop the Thyroid Madness up and running for yourself and other patients just like you! If you appreciate STTM, please go here to make a donation to the hosting fees. I do not get it! The hosting company does.

The large size STTM t-shirts are now gone. If you can wear an X-large or XX-large and want to spread the word to others, go here. And the bumper stickers REALLY catch attention!! I am stopped in parking lots because of mine. YOU could change someone’s life!

The Contact Me page on STTM hasn’t been working for weeks. And I didn’t know it.  But it’s fixed now.  Remember: it’s not to ask questions about your personal treatment. Those need to go here.

The STTM book helps in your doctor’s office. Have brain fog? Many patients are telling me they take the book right in the office, bookmarked. I can’t promise how your doctor will respond, but it’s been positive for most when a book is referred to right in front of the doc. I hope it helps you, too.  P.S. Only books ordered directly from the publishing company get a bookmark of updated info. That’s also true if you have a book sent to a relative or friend.

(Note: this is a long post, but will be worth every penny if you read it all!)

When STTM first put out its shingle in December of 2005 (with most of what you see today going up in ’06 and ’07 with continual additions),  my goal with this site was simple: to educate thyroid patients.

And as I saw it, by educating patients on what we had been learning, patients could in turn, take that information into their doctors offices and push for change. And it’s been working, slowly. We now have more doctors than ever before who know about desiccated thyroid and are willing to prescribe it, even if they are the minority. STTM has a page on how to try finding one of those good docs.

But as I wrote about this fact in my previous post, certain patients can still find themselves frustrated, angry and sick because of doctors. It’s not a pretty picture for some.

I am lucky, as I’ve always managed to have a fair doctor to work with, without complicated issues. But a lot of patients aren’t as lucky.  They either can’t find a doctor to treat them correctly after trying repeatedly, or they simply can’t afford to keep driving to find a good doc (with no promises that they will get the good doc they desperately need anyway). As a result, many thyroid patients report being forced to self-treat.

Even though STTM was never created as a self-treatment site, I am aware that some patients use it that way.  And I can never condemn them. Granted, a few who make their own choice to self-treat can run into problems, most especially from undiscovered or undiagnosed low ferritin or low cortisol. But it’s a choice they seem to make out of desperation.

The following  post is by  Guest Blog poster and UK’s thyroid patient advocate Sheila Turner of TPA-UK.  These are her courageous thoughts concerning self-treatment, and her angst against anyone who tells patients not to do so.  Overall, UK patients have a very tough situation in the UK with doctors, but so do the vast majority of patients around the world, as well as US patients. See what you think…

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It’s not uncommon to be told as a suffering and debilitated thyroid patient to never self-diagnose, never self-treat, never self-monitor.

And in an ideal world, we could take those admonitions on. But we are not living in an ideal world.

You might as well tell everybody with ill health to put up with whatever they are suffering and leave their health in the safe hands of our ‘wonderful’ doctors whom we can trust implicitly.  Sadly, many doctors have little (or no) education in the workings of the thyroid system.

Or, you might just try touring the country until you find one who will help. Well, if you have the energy and the money to do that, it could take a heck of a long time before finding such a good doctor — indeed, IF you ever find such a doctor.

I run a very successful Internet Thyroid Support group, plus web site for thyroid disease, and I have seen at first hand (and experienced it myself) the nightmare of having to put up with the terrible suffering caused by Doctors.

In the UK, for example, it is organizations such as the Royal College of Physicians and the British Thyroid Association who have terrified NHS doctors so much that they now no longer prescribe any T3 hormone containing products, neither natural nor synthetic, for fear of being reported to the GMC  regulatory body with the threat of losing their career and livelihood.

One comment I hear from those who condemn self-treatment is the problem of over-medicating. In reality, it is the reckless prohibition of all T3-containing drugs that causes cardiac arrhythmia and risk of  sudden death -  which would amount to at least manslaughter, and might even constitute murder if the outcome is strictly foreseeable - which it is. It is NOT patients who should be criticized. They have been driven to buying prescription medicines for thyroid and adrenal insufficiency. Criticizing self-treatment is an outrageous claim and one that the medical regulators would no doubt be delighted to hear. Seems that not only are doctors becoming sorely afraid of the Regulators, those who condemn self-treatment are also falling into the same trap.

The “basic premise” that underlies my own purpose and advocacy is to help those being left to suffer because the medical regulators and government are refusing to give a proper diagnosis — and for those who do get a diagnosis, giving them levothyroxine sodium-only as a thyroid hormone replacement.

Whenever a new member comes to TPA, we encourage them to read, read and read again and to look at the information in our FILES section which is there for all to see. We tell them about the associated conditions that go along with being hypothyroid such as low adrenal reserve, systemic candidiasis, mercury poisoning and ask them to request blood tests from their doctor to see if their levels are low in the reference range for ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. We have information on the reasons they need to check these and if any of these are a problem, make sure they are aware of just how essential it is that they eliminate these conditions, one by one, before starting thyroid hormone replacement – such conditions are NOT automatically checked by NHS doctors – and they put their patients at great risk by automatically prescribing levothyroxine.

We all know of the serious ramifications for those patients who are not being given a correct diagnosis or treatment. However, it is the endocrinologists and medical regulators who are guilty of causing much of the unnecessary suffering, not those patients who are driven to self diagnose, self treat and self monitor, as those who criticize self-treatment would have us believe.

Mainstream doctors do not appear to be even aware of the many common and often undiagnosed symptoms and dangerous consequences of low thyroid. These include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, anaemia, elevated CPK, elevated creatinine, elevated transaminases, hypercapnia, hyperlipidemia, hypoglycemia, hyponatremia, hypoxia, leukopenia, respiratory acidosis and others.…

If sufferers of the symptoms are NOT getting a proper diagnosis and the thyroid hormone replacement that would give them back their life and health through mainstream doctors, how on earth would you recommend they do this, apart from scouring the country to find a doctor elsewhere who would help them, or recommending they get enough money together to see a private thyroid specialist. Do you REALLY have such complete faith in the medical profession to know that we should ALL leave our thyroid health in their hands, sit back and do nothing – and probably just wait to die? How can you recommend that they do NOT buy prescription medications and should not self-medicate, self treat or self monitor when there is NO other option left open to them.

If those who criticize self-treatment have personally heard from “DOZENS” of people who have followed the “increase my own dose of natural thyroid” self medication approach, then yes, something is seriously wrong with the ‘teachings’ or advocacy of such groups. Education should be encouraged by all, and if members do not understand the reasons why they need to take great care, such explanations should be given in such a way that they understand.

I rarely hear of members ending up in Emergency Rooms battling potentially fatal heart arrhythmia’s, atrial fibrillation, and/or ending up in worse health than before, including long-term and permanent heart damage through self-treatment. I have heard of many NHS patients being admitted to A and E, who had been treated (or not) by mainstream doctors who refused them the correct therapy their symptoms needed.

In good conscience, I do recommend that thyroid patients self-diagnose, self-medicate and self-treat if they are being left to suffer, because organizations such as the RCP, BTA TSH reference range is so huge that they will never go outside of it. This reference range is 0.5 to 10.0 in the UK – probably the widest in the world. Then, we have to put up with the fact that the only thyroid function test that will be done is the TSH – and doctors will not test Free T4 in a lot of cases, never mind free T3 level. Also, NHS Pathology labs refuse to test free T3 even if the doctor has specifically requested it. So, many of us will NEVER get a proper diagnosis – being left to suffer their unnecessary symptoms for years and become wheelchair/bed bound in many cases, having to leave paid employment.

Such patients are told they have a ‘functional somatoform disorder’ when their TFT’s are normal, when they continue to complain of symptoms – or – those who are lucky enough to get a diagnosis, who are treated with levothyroxine only yet still complain of debilitating symptoms are told also “you have a functional somatoform disorder” or “your symptoms are non-specific” .

What mainstream doctors do not recognize is that thyroid function tests ONLY test the amount of thyroid hormone being secreted by the thyroid gland.  TFT’s (more correctly should be called Thyroid GLAND function tests”, do not test to show whether there is peripheral resistance to the thyroid hormones at the cellular level. This is not due to a lack of thyroid hormones secreted by the gland. Blood tests do NOT detect Type 2 hypothyroidism. Type 2 is usually inherited. However, environmental toxins may also cause or exacerbate the problem. The pervasiveness of Type 2 has yet to be recognized by mainstream medicine, but already is in epidemic proportions. I think many sufferers of the symptoms of hypothyroidism know very much more than their medical practitioners. I do know which road I would like to follow – that is to find an excellent doctor I could trust implicitly, but sadly, the ONLY road many of us have to follow to get back normal health is the one where we have to self medicate.

Please do NOT blame patients who are driven to self diagnose and medicate as being the reason why the US government, or any other government for that matter, are now eliminating the availability of natural thyroid and synthetic T3. You are being sucked into believing what they want you to believe.

Levothyroxine is a synthetic medication that can be patented, and has made billions of pounds for the Big Pharma and for the regulators of hypothyroid guidelines. Natural thyroid products cannot be patented. Should doctors prescribe either synthetic or natural T3, the majority of sufferers of the symptoms of hypothyroidism would regain their normal health – Big Pharma would suffer.

You should perhaps read the book “Dirty Medicine” by Martin J Walker if you have not already read it. Those who criticize self-treatment appear to be accusing all those suffering symptoms of hypothyroidism who have been driven to buying medications without prescription and self treating as making it worse for the rest of those suffering. It is NOT them who are abusing T3. If a T3 hormone containing product was properly prescribed, there would be NO NEED FOR PATIENTS TO BE SELF MEDICATING.

Self medicating, whatever drug we are taking, whether using a T3 hormone containing product or not, is always risky and patients must be fully educated in its use. However, self medicating with any drug runs risks, but I would rather self medicate with the chance of getting my health back than leaving my health in the hands of totally incompetent doctors – incompetent because the teachers in our medical schools are incompetent.

For those who are being left to die, without the treatment that will make them well, do-it-yourself medication is the only option left open to them. Would you really deny them this?  Leaving patients without the thyroid hormone they need is appalling and one of the reasons TPA is campaigning to bring about changes in the diagnosing and treatment of the symptoms of hypothyroidism.

It can be appreciated to say to work with the right doctor, but what do you recommend if patients cannot find the ‘right’ doctor?? Perhaps you should all come over here to the UK and help those sufferers in finding the right solution and offer to help them help to find a “good doctor”.

Sadly, there are never any solutions given or alternative to self diagnosing, self-treating or self-monitoring, other than to “find a good doctor”. This does not help Internet thyroid support forum members.

Sheila
http://www.tpa-uk.org.uk/

The Society for Endocrinology in the UK recently reported that taking higher doses of thyroxine (which will lower the TSH lab result) may be safer than has been purported for decades.

And how low a TSH lab result did they find to be safe? As low as 0.04–0.4, the research found, is still safe enough to not cause an increased risk of  “heart disease, abnormal heartbeat patterns and bone fractures”, aka HYPERthyroid symptoms.

And those of us worldwide who know about the superiority of natural desiccated thyroid can also use these research results in our fight to be on enough desiccated thyroid with TSH-obsessed doctors, who view research as the end-all to the truth rather than solid clinical presentation, sadly. Because when we are on enough desiccated thyroid to feel fabulous again with all symptoms removed (in the presence of good cortisol levels, adequate ferritin, B12 and digestive issues), our TSH lab result is always low, aka suppressed, and without one iota of hyper symptoms.

Patients have experientially known this truth about the lousy TSH lab test, without research, for years!

But here’s what’s missing from their research:

1. Those “safe, low levels of an “ink spot on a piece of paper” do not mean the 16,426 patients they followed will be without numerous issues related to being on a storage hormone.  i.e. the body is not meant to live for conversion alone! A healthy thyroid will convert T4 to the active T3, but it will also provide direct T3 in addition to the T2, T1 and calcitonin…none of which a T4-only med provides directly.
2. Additionally, the TSH lab test only reveals the action of a pituitary messenger hormone called the Thyroid Stimulating Hormone (TSH).  The lab test does NOT measure whether your tissue is receiving enough thyroid hormone, which is why so many patients on T4 end up with depression, rising cholesterol, high blood pressure, low B12, low ferritin and many symptoms, as well as adrenal fatigue thanks to the inadequate treatment of T4.
3. Raising T4 often encourages an excess production of Reverse T3 over time, which will block cell receptors and increase the very symptoms the researcher state is avoided, as well as far more hypothyroid symptoms.

But on the positive side: this is just one more research study that ends up being on our side in our quest in teaching our doctors about far better treatment protocols. I have also included mention of this study on the following page on STTM, where I keep a ongoing list of  research which supports what patients already know by their experience and clinical presentation:  http://www.stopthethyroidmadness.com/medical-research/

(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?

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!

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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

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.

Funny how things work. 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 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.

All the above goes totally against the life-changing experience of a growing body of patients.

Equally a part of this B-grade horror movie is the stand taken by the British Thyroid Association (BTA).  Read it. 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 stand is as bad as it was three months ago for her and other thyroid patients.

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, as well as the use of far better labs, is about as important within the UK’s latest medical pronouncement as is dirt on the bottom of a rusted bucket in the middle of an empty field in nowhere. Yup.

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

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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.

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.