IMPRESSIVE GOOD THYROID NEWS!  

After a grueling week by the United Kingdom’s General Medical Council (GMC) , it was decided that the UK’s most renowned thyroid practitioner, Dr. Gordon P. Skinner, should have all his restrictions lifted and his Fitness to Practice restored!

On November 11th, 2007, the GMC had decided that the beloved Dr Gordon Skinner was not fit to practice, simply because in 2005, he dared to listen to and dose by a patient’s clinically-presented thyroid symptoms rather than her TSH labwork–the latter which fell in the erroneous normal range.  Even more dastardly, felt the GMC, Skinner was going to treat the patient without a referral letter from her GP, and may have failed to contact the GP. Heaven Forbid!!

Says a recent statement from TPA-UK:

The GMC have agreed that Dr Skinner was not acting dangerously in initiating treatment with thyroid hormone replacement for those patients who had normal thyroid function tests but who suffered several symptoms and signs of hypothyroidism. They also agreed that for those patients who did not do well on levothyroxine-only therapy, the use of natural desiccated thyroid extract (i.e. Armour Thyroid) was a safe and effective thyroid hormone replacement that doctors could prescribe, even though it remains unlicensed. This is a precedent - and one that the British Thyroid Association are most definitely very unlikely to be happy with.

There’s something huge to learn from this!  It’s called PATIENT POWER, my thyroid friends, and what we must always practice in our fight to get far better treatment. Namely, what impressed the staff of the GMC was the sheer volume of the general public who attended the hearings in support of Dr. Skinner.  Additionally, there was a nicely bound volume of over 2000 patient citations in support of him.

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SURVIVING STRESSFUL EVENTS EVEN WITH ADRENAL FATIGUE

Having adrenal fatigue with its low cortisol can be a challenge, even while you are on Hydrocortisone for your treatment (HC). So thyroid and adrenal fatigue patient Robin had to learn the hard way how to do something very stressful and still survive, adrenally. After moving to a new house, she created these excellent tips for dealing with any stressful event and preventing an adrenal meltdown:

1. REST REST REST as much as you possibly can! Just sit and stop moving, give yourself permission to stop “doing” and just BE! Let others do the work.
2. Don’t be afraid to stress dose with your HC!  Remember that a healthy person’s adrenals can provide over 100mg per day when in very stressful circumstances! Of course this is not healthy long-term, but we do what we have to do to survive!
3. Remember that if you stress dose, you’ll need to start a tapering down by 2.5 mg, holding for several days, then taking off another 2.5, etc until you work back down to your “regular” daily dose–the one that gave you stable Daily Average Temps.
4. SALT! Drink lots of salt water (or juice–I prefer my salt in watered-down juice or other flavored drinks), salt your food heavily, and even eat lots of salty olives, if you like them! The adrenals thrive in salt, and this can also be important if your aldosterone levels are also sluggish.
5. Eat lots of protein and fat and try to keep the carbs as low as you can!
6. Give yourself permission to be a hermit for a while. People can wait for you to return their calls. Just enjoy some quiet and solitude for a while.

PAYING FORWARD WHAT STTM HAS GIVEN YOU!

Janie began a contract with a top-notch publicist to help get the word out to millions about the problems with T4-only, or for those remaining undiagnosed or undertreated due to the TSH lab test (similar to what Dr. Skinner above tried to avoid for one of his patients). She already has interviews scheduled and more gigs are coming.

But this contract won’t last long–it’s just too expensive for Janie alone. So your help is needed to reach more people, and soon.

Go here and read all about it.

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READING THIS VIA THE EMAIL NOTIFICATION?? If you want to comment on anything on a blog post, click on the title of this post, and you’ll be taken right to the actual post. Then scroll down for the Comment square.

(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)?  THINK AGAIN.

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 thelatest 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.

• HEALTHCHECKUSA WENT UP ON SALIVA TESTING….BUT HERE’S HOW YOU CAN GET THE ORIGINAL PRICE!!

On the Recommended Labwork page, you’ll see several lab facilities where patients can get their own labwork done. HealthcheckUSA is a favorite for many. Unfortunately, their “Adrenal Hormones Saliva Testing Kit from ZRT labs (Dirunal Cortisol and DHEA-S)” went up, from $170.00 to $ $265.00. But there is GOOD NEWS:  STTM’ers can keep the price of $170.00 by placing a PHONE ORDER for the saliva at 1-800-929-2044. The customer will need to mention STTM!!   MENTION STTM to get the discount.

• READING THIS BLOG POST VIA AN EMAIL NOTIFICATION??

If you want to respond to this post, click on the title at the top of the email, which will take you directly to the blog post on the STTM site. Then click on Comment.

ARE YOU ON CYTOMEL?

In reality, your local pharmacy needs to contact Pfizer Canada about getting re-stocked.  Says Mare, “The pharmacy’s inaccurate data caused me a great deal of angst this weekend as I was now totally out of the only thing (Cytomel) that’s even remotely made a bit of difference and now they were telling me I couldn’t get it anymore (do we patients always have to do everything ourselves??!!!)”

***Have you had any problems filling your T3? Comment on this blog post and tell us your experience.

WHY WOULD ANYONE BE ON T3-ONLY?? Did you know that if you have too high or too low cortisol levels, and/or low ferritin/low iron, there’s a good chance you may need to be on T3-only for awhile?  Yes, when you have ongoing chronic issues as a thyroid patient, your body will respond by converting the T4 you have to excess Reverse T3.  And excess RT3 will hog-and-clog the very cell receptors that would be receiving T3. Thus, you become hypo all over again.  You can read more about it here. But if you want even more good detail about T3, how this active thyroid hormone helps you,  the causes of RT3, and how to dose T3-only meds, get the Revised STTM book. It’s VERY worth it.

***What brands of T3 you have tried,  what works for you, and what hasn’t worked as well?? Comment on this blog post.

THE CONTINUING SAGA OF DR. SKINNER IN THE UK: If you aren’t aware of the incredibly shocking story of beloved Dr. Gordon Skinner in the UK—a man who dared to prescribe thyroid treatment in lieu of a “normal” TSH lab result (which is a lab test that informed thyroid patient worldwide know is completely bogus)—you can read my 2006 blog post about him here, followed by the 2007 post here.  Also, Sheila of TPA-UK gives detailed information here.

And everyone should know that his General Medical Council (GMC) hearing is coming up:  July 28th and 29th, plus August 1st, 2nd and 3rd.  This is to assess whether further action is needed after his 3 years of conditional practice are now up (as of late last year).  Says a strong supporter of Dr. Skinner (and there are MANY): “Please  let people know that their support is extremely valuable. Dr Skinner has asked for the hearing to be public and the GMC should accommodate everyone.”

***Are you in the UK? Keep us informed by commenting below.

HIP HOP MISSY ELLIOTT HAD RAI FOR HER GRAVES DISEASE: How many informed thyroid patients groan when they hear news like this concerning the use of RAI (radioactive iodine)! Thyroid patients worldwide bemoan the use of Radioactive Iodine treatment because of its potential for immense side effects. And all over the net, we read that’s just what was done to Missy Elliott in her battle with Graves disease aka hyperthyroidism.  See the People Magazine article here.

Says the Atomic Women website:

Rheumatoid arthritis is also an autoimmune disease. But, fortunately, limbs are not being amputated nor radiated.

Diabetes mellitus is also an autoimmune disease. And, fortunately, the pancreas is not being removed or radiated.

What is the point of irradiating and killing thyroid glands, which are fundamental for life?

We, as thyroid patients worldwide, wish the best for Missy. And we hope that if she is like many who eventually become hypothyroid, she will discover and learn from Stop the Thyroid Madness!

***What was your experience with RAI? Post side effects? Let us know by commenting on this blog post!

For example, the article notes that there seems to be a “higher symptom load and the lower quality-of-life scores in the group of patients with increased anti-TPO levels”, which can include “Chronic fatigue, dry hair, dysphagia, irritability and nervousness”. Yet, the article states, these patients have “normal thyroid function” , are “euthyroid” and have an “ideal biochemical response to thyroid hormone replacement therapy.”. Are you kidding me, say many thyroid patients???  Chronic fatigue, dry hair, dysphagia, irritability and nervousness are classic hypothyroid symptoms, as well as potential adrenal issues from having poorly treated hypothyroidism!

And of course, most thyroid patients who are informed know that “normal” and “ideal” refer to an ink spot on a piece of paper called the TSH lab result and NOT cellular receipt and/or use of thyroid hormones.  The TSH lab test has failed patients for decades, just as has T4-only!

Also mentioned is the Austrian study involving 426 women aged 19 years or older who were undergoing surgery for benign thyroid disease. When SO many patients come on thyroid groups and report Endo’s who want to remove their thyroids simply because they have the treatable Hashimotos disease, you have to wonder why 426 women were having surgery for “benign thyroid disease”… To read all the ways patients have learned to adequately treat Hashimotos, go here. To find a good doctor, go here.

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

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“Have you registered?  The Charity, Thyroid Patient Advocacy www.tpa-uk.org.uk, is creating a World Register of Counterexamples to levothyroxine-only (T4) therapy. This short survey is applicable only to those who continued to suffer symptoms on T4-only therapy, and who found those symptoms were mitigated or disappeared once they were started on a T3 hormone containing product , whether synthetic or natural thyroid extract. The objective is to push for a re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism. If you fit this category, please complete the 3 questions with either ‘YES’, ‘NO’ or N/A here http://www.tpa-uk.org.uk/register_of_counterexamples.php All responses will be collated online, and your email address (if you provide one) will be used ONLY to contact you at a later date should this be becomes necessary. (A counterexample is a situation which fits the concept or premise of an idea but produces a different result.  To be responsible, a scientist who finds a counterexample to his idea, must limit or abandon his idea as unworkable, or not reliable.)

I’m amazed at lingering problems since being on T4:

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

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

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

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

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

Have a great holiday season!!

Janie

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

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.

Today, it has been announced by the GMC (General Medical Council) of the UK that Dr. Sarah Myhill is now straitjacketed. She is forbidden to prescribe medications, is bound by other medical practice restrictions (see the details on the Support Dr. Myhill Facebook page), and most egregiously, has been ordered to remove parts of her website (thanks to Lethal Lee for pointing this out), some of which you will not see two weeks after I have posted this.

Why remove parts of her website? Because by daring to educate the public, especially if that education goes against “standard medical practice”, it seems to be deemed “harmful”. In other words, you as a patient are not allowed to discover, or are too “vulnerable to get it,  that there just might be a TOTALLY different story to the medical practice you are subjected to.

For example, here is part of a page on Dr. Myhill’s website which is completely correct, informative, and wise, and I want to see her words stay sharp and viewable, especially for thyroid patients. It fits our experience. The page is titled “Test results and what they mean”. If you want to be informed, read all the below.

http://www.drmyhill.co.uk/wiki/Category:Test_results_and_what_they_mean

Only too often people come to me with tests results which have not been properly interpreted. The reasons why this happens are as follows:

• Test results are flagged up and considered to be abnormal if they are outside the reference range, but one’s individual normal range is not the same as the population reference range. This is a particular problem in the interpretation of thyroid tests.
• Reference ranges for tests change. Reference ranges are based on random bloods from the population. The trouble is anyone following a Western lifestyle is not evolutionarily correct and many not normal! So labs change their reference ranges to adjust for this. So, for example, the normal range of a gamma GT used to be up to 36, it is now up to 70. This enzyme is induced by alcohol and prescription drugs and because so many people drink alcohol it is considered normal to run a high gamma GT! The lab I use has a normal reference range for thyroid hormone T4 of 12-22pmol/l but some labs give ranges of 5.6-17pmol/l!
• Tests are often incomplete. So someone with a thyroid stimulating hormone (TSH) within reference range will be told they have no thyroid problem, when in fact one also needs a free T4 and a free T3 together with a clinical history to assess if there is a thyroid problem.
• Drug companies influence normal ranges. The normal range for cholesterol has come down steadily since statins have been such big money earners for Big Pharma.
• Incorrect breakdown of test results. Many people are prescribed statins on the basis of a single cholesterol level. This is faulty for many reas ons – firstly one needs a breakdown of good (HDL) and bad (LDL) cholesterol to get the ratio. If the ratio is not favourable then this is likely to be a symptom of arterial disease. Cholesterol lowering drugs are often irrelevant. See Cholesterol – the common causes of raised levels
• Results close to the limits of normal may be abnormal for that person. For example, a high normal bilirubin may mean Gilbert’s syndrome – this means someone is a poor detoxifier. A high mean corpuscular volume (MCV) could point to hypothyroidism, B12 or folic acid deficiency.
• Normal tests do not mean no pathology. A normal ECG at rest does not mean there is no heart disease, yet many people are told this is the case.
• Tests may ask the wrong question. So many people come to me with severe fatigue syndromes having been told nothing is wrong because all the tests are normal! But ask the right question and do Mitochondrial Function Profile and you find gross abnormalities with respect to energy supply at the cellular level.
• Tests for poisonings are particularly misleading. For years doctors have promoted levels of cholinesterase as a good test for organophosphate poisoning. It is a rotten test and misses the majority of cases! Much better would be Fat biopsy for pesticides or Volatile Organic Compounds

GOOD FOR YOU, Dr. Sarah Myhill!

I and many other thyroid patients, struggling to fight the inane thyroid treatment protocols, have a strong feeling that though this progressive doctor may be restricted as a physician, we’re going to hear a lot more good information from the courageous and wise Sarah Myhill.

It’s a continuing travesty, and you see it in patient groups.

i.e. many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,

So what’s the problem?? It lays with our doctors and the entire medical profession.

1. Heavy-handed control over your medication: You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).
2. Ignorance about adrenal fatigue and treatment: You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.
3. Dismissing the Ferritin test: You want to know what your ferritin is, but the doctor’s nurse underscores that they’ve already checked your iron levels, so there’s no need for more testing.
4. Dismissing you: You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.
5. RT3 huh? You have strong suspicions that your Reverse T3 is too high thanks to adrenal fatigue, low ferritin, undiagnosed gluten issues, or other reasons, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.
6. Look at me! Look at me! You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet any or all of the above and below occurs with him/her or his “trained” associates.
7. Continued worship of the TSH lab test:  Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match.
8. Pharmaceutical addicts: You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understand that these are ALL side effects of poor treatment or undiscovered issues.
9. The country you live in: The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it.  Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail.
10. Reformulations and Big Pharma apathy: Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose , causing a massive return of symptoms in many, sooner or later. RLC also reformulated their Naturethroid, and though some patients still do well on it, others do miserably, and we are left wondering WHAT to take. (Thank God for Erfa’s Canadian “Thyroid”, but will we be able to continue with this fabulous desiccated thyroid product?)

And there are more reasons you might want to bring up in the Comments part of this post.

So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so. I refuse to condemn them for exactly the reasons above.  Petty. All I ask is that we all try to find a good doc, but it may be quite hard when you consider all the above.

All-in-all, we still have  a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt.

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!™

Charles explains that in 1999, his 67-year-old wife had RAI (radioactive iodine) and was then put on levothyroxine, a T4-only medication (aka Synthroid, Levoxyl, Eltroxin, Oroxine, levothyroxine, et al).  And not long after, she complained of having depression.

He had an idea why after reading the New England Journal of Medicine about T3, and proceeded to buy her Armour off the internet.  Without her knowing, he switched medications. Lo and behold, he states “she promptly returned to her usual sunny disposition”. Her physician knew nothing of the switch either, and found nothing to be concerned about in her.

Charles then explained how, at age 74 in 2007, she was near death thanks to an ulcer bleed.  And to continue treating her hypothyroidism, the hospital gave her levothyroxine all over again.  Back came her depression and a feeling of wanting to go home and die.

So Charles brought her Armour to the hospital, and though her physical state was depressing enough, her sunny disposition returned.  And that happy spirit while still on Armour continues today after a full recovery.

And Charles pondered. If his wife had been in a NHS (National Health Service) hospital under the care of a so-called thyroid specialist of the NHS, would she have failed to obtain T3 and instead, sent to a psychiatrist as if her depression had nothing to do with her levothyroxine treated hypothyroidism–the very treatment that the Royal College of Physicians has a dogmatic love affair with?

He then concludes: My wife’s depression was obvious. Since she is equipped with much the same assortment of body parts and associated physiology as others, is it not likely that many levothyroxine-treated patients suffer from less-noticeable depression?

Well Charles, most any thyroid patient who decides to respond to this will tell you unequivacably YES, YES, YES.  Because there’s no research, study or directive that is more profound and telling than the actual EXPERIENCE of patients all over the world with T4 treatment and depression…besides a slew of other side effects of continuing hypothyroidism on T4-only meds.

Did you have depression on a T4 med? Tell us about your experience in the Comments section of this post.

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*Scroll down to the June 2nd post and report your experience on the newly formulated Armour. It’s not a happy picture.