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!™

On the heels of an excellent Thyroid Patient STTM Community Call on iodine with guest Stephanie Buist (see below), it was just announced by the Food Standards Authority of Australia and New Zealand (FSANZ) that Australia will add the micronutrient iodine to bread. New Zealand already started that practice in September of last year.

The announcement mentions the importance of iodine to thyroid functioning, as well as for infant brain and nervous system, both during and after pregnancy.  For the latter, it states “Not having enough iodine during pregnancy and early childhood can cause developmental delay and lead to reductions in mental performance. This damage prior to 2–3 years of age is irreversible.”

Apparently, the  soils of Australia and New Zealand are not too prolific in iodine, and patient levels have been revealing that fact for decades. But Stephanie Buist, the friendly and knowledgeable owner of the yahoo group Iodine, as well as a thyroid cancer survivor, states that even most US soils are becoming depleted.  It’s not just a problem of the northern US “goiter belt”, Europe or Africa anymore.

The importance of iodine goes even farther than thyroid functioning, pregnancy and infant brain development. It has a key role in breast health, your immune system, bones, estrogen metabolism, lung health, eyes, and cancer prevention. The iodine4health website lists many benefits as well as areas not understood yet.

How much do we need? Experts like Abraham, Flechas and Brownstein will emphatically state that we probably need more than is recommended.  At least 50 mg of iodine may be necessary for awhile to bring your levels back up to healthy amounts, besides stop the the side effects of iodine on hashimotos disease.  i.e. thinking you are getting enough iodine naturally from foods, or even from natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or compounded, may not be so.

How do you find out if you are iodine deficient? Stephanie stated on the Community Call that the majority of folks probably are deficient. But if you want to be sure, you can do the Iodine Loading Test.

What are good iodine supplements? Lugols is an liquid variety, and my husband and I personally use it in our morning juice or Emergen C (my husband uses Emergen C in water since he’s diabetic, and it’s a good way for him to get his Vitamin C).   In pill form is Iodoral, developed by Abraham.  You can google either and find some website sources. Also good to take with iodine supplementation is magnesium, Vitamin C, and selenium, which helps with the detox effects.

You can listen to the recording of Stephanie’s and my conversion on iodine by going to the link below for Episode 5 of the Thyroid Patient STTM Community Call. (Yes, I will correct the skipping you hear in my voice next time.)

Read Diana’s experience with iodine helping her get off desiccated thyroid. Not something we can all do, but it happened to her!

If I need to add more info or corrections, please use the Contact Me form at the bottom of any page on Stop the Thyroid Madness.

THIS PATIENT REVOLUTION for a better hypothyroid treatment is working! Desiccated thyroid brands which were almost extinct from low use are now seeing a comeback. Another comeback?? PATIENT HEALTH!! T4-only meds do NOT work, unless an elevator which only goes to the 5th floor of a 50 story building.…works. My quote; my words.

p.s. See the post below about the importance of your potassium levels, and below that, how being hypothyroid can affect your liver, and my opinion of that fact with T4 meds vs. desiccated thyroid, which one comment disagrees with.  For the May 7th post, comments are still coming in about the “New” Armour. Express yours, and let’s hope that just raising it will do the trick, in spite of the loss of being able to do it sublingually as easy as before–a sad loss.

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http://www.youtube.com/watch?v=bFzS0wgwyW4&annotation_id=annotation_179773&feature=iv

Janie

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*See below on how being on T4 meds can affect your liver. And below that–why I’m handing my promise ring back to Forest Pharmaceuticals.

I can remember a few people the past year who proclaimed fervently that Armour was being discontinued because of the shortage.  And I chuckle about it.  Hopefully, my previous posts helped calm that fear.

But in case you haven’t heard, those larger sizes are back!  And you can keep track of what’s going via the Forest Pharmaceuticals customer product availability hotline: 1–866-927‑3260  As of today, April 19, they state that the one grain tabs (60 mg) and 1 1/2 grains tabs (90 mg) are on backorder, and will catch up with production on April 20th, tomorrow as I am writing this.  We’ll see.

Unfortunately, the new formulation has made Armour lacking in sweetness, and it’s almost impossible to do it sublingually.  Sad. Maybe another pharmaceutical will get the hint. In the meantime, if you swallow your desiccated thyroid, make sure to avoid calcium, iron and estrogen at the same time. And if you’ve been doing it sublingually, and have to switch to swallowing, you may need a tad more.

Remember: if you have any issues with natural Armour desiccated thyroid in the treatment of your hypothyroidism, you can always ask your doctor for a prescription switch to Naturethroid or Westthroid, both fine FDA-approved, US Pharmacopeia standard prescription desiccated thyroid.

Janie

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P.S. If you haven’t bought the Stop the Thyroid Madness book yet, wanted to tell you that numerous patients are emailing me, stating they find the book even easier to refer to than this vast website (plus it has more details and information).  So if you want the ease of referral, the book may be the way to go.

Last week, I had found my blood pressure quite high for me! Upper 140’s and some 150’s for my Systolic, and upper 90’s and lower 100’s for my Diastolic.   Stage One hypertension!  I was pretty sure my 4 grains may suddenly be a tad too high since entering meno.  My temps and heartrate implied that, too.

I got off Armour for two days to use up some excess, got back on one, then on 2 grains multi-dosed.  My plan is to make my way back up to 3 1/2 grains by a week or slightly more…and see.

In the meantime, I have been using some blood pressure lowering supplements (high dose potassium, grape seed extract, Braggs Apple Cider Vinegar in juice, more CoQ10 than normal, plus my regular supplements).  I was more faithful to my treadmill walking (thanks to an April that still thinks it’s winter), and meditating. The latter two definitely helped lower both the Systolic and Diastolic, even if not low enough for my ideal.

For the last five days, my BP readings have still been too high. All those days, I had been seated on our couch. I put a pillow in my lap, laying my arm on that pillow, which meant my arm was slightly downward.  Sometimes my wrist would hang off the pillow.

Today, I decided I wanted to test something I have read. Namely, it’s actually quite important how you place your arm. The recommended way is placing your arm perpendicular to your body and at the height of your heart or a tad higher, all while comfortable resting on something.  Elbow can be flexed, but your arm must still be perpendicular to your body and about heart height or slightly higher.

Below are four of my most recent afternoon BP readings with pulse: two with the Left arm, then two with the Right arm.

L:  139/106   98  (arm hanging down and resting on seated leg)
L:  122/88 89  (arm up, perpendicular to my body, supported by pillows)
R:  141/87     92  (arm hanging down and resting on pillow)
R:  123/85 89 (arm up, perpendicular to my body, supported by pillows)

What you should note is that the first L reading, and the first R reading, were with the arm relaxed on a pillow but lower than my heart.  The second of each is with the arm on two pillows, putting it perpendicular to my heart,  with elbow flexed, and all of arm completely supported.

I was shocked! Putting my arms in what research is saying is the CORRECT position gave me much better readings. I am VERY pleased with the 122 and 123.  Much better. And though the 88 and 83 Diastolics are not to my liking yet, and tell me I need more work, the difference between the arm positions was stunning.…as is the difference in what I’ve been getting for five days.

More info: it was brought to my attention that taking a second BP reading is usually always lower anyway. Ah, I thought, that’s correct! So to test this information based on research, I went back last night before bedtime. First took my BP with my arm in the upper correct position. Then the second time, took it with my arm down.

138/89 (up perpendicular to body; level with heart) pulse 80
146/100 (arm down) pulse 82

The second did NOT go down. It went UP! Interesting.

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**Are you in the US and want to help make sure we don’t end up like the UK, having our Armour taken away?? In the post below, I have given you SEVEN STEPS that I hope you will follow through on!  YOU can make a difference.

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??

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

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1) That the NHS is correct to ban Armour

2) That Armour is a “second drug” that causes harm.

3) That it’s only “fringe” patients who don’t do well on T4

4) That none of the above patients are hypothyroid

5) That they don’t feel well on T4 because of other reasons

6) Therapy is not needed if the TSH is below 10

You know what patients have a fantasy about, Dr. Gutler?? That folks like YOU become hypothyroid and are put on T4. You’ll then have to eat dirt as you see your blood pressure rising, or your cholesterol doing the same, or depression and fatigue setting in, or your adrenals overworking, or weight gain and a host of other continuing symptoms of hypothyroid while on T4. OH WAIT. Those are all due to something else. Gee, let’s put you on anti-depressants, statins, blood pressure meds, pain meds, anti-anxiety meds since those “other” reasons never seem to be fixed.  OH WAIT. They DO get fixed when these same patients are switched to Armour or any other desiccated thyroid, and have addressed their low cortisol or low ferritin thanks to years of undiagnosis or undertreatment with T4.

SHAME ON YOU.

p.s. It’s because of opinions like yours that the Stop the Thyroid Madness book has been sent to patients in over 16 countries, so far. People want to find out the TRUTH.

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

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

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Recently, after we watched a semi-scary movie about being suckered, a friend brought up my blog post of last July where I described a terrifyingly-real horror movie.

The plot: stunningly convince hundreds of millions of individuals worldwide that what is obvious, isn’t. i.e. it’s all in your head, you are adequately treated on Synthroid, Levoxyl, Eltroxin, Norton, et al,  and not only that, we’ll bandaid your continuing problems with more medications.

A second plot: also completely hoodwink those with top notch higher medical educations and experience by churning out the the exact same poppycock, and reward their stupidity with gifts.

The central villian: Big Pharma, followed by the doctors who bought the lie

Exactly a year ago this month, Science Daily came out with an article, citing two York University researchers who estimated that the U.S. pharmaceutical industry spends almost twice as much on promotion as it does on research and development, contrary to the industry’s claim. In other words, the researchers estimated that $57.5 billion in US dollars was spent on pharmaceutical promotion in 2004–the year they were studying. Yes, I said BILLION.

Breaking that down, Big Pharma spent approximately $61,000 per physician in promotion of their products.  And they concluded that both figures were UNDERestimates.  In other words, they concluded that the US pharmaceutical industry is marketing-driven rather than “life-saving”.

And adding fuel to the fire: most doctors believe every thrust of that marketing. I recently participated in comments with other wonderful patients in response to a DO/Endocrinologist, Dr. Thomas Repas, who has clearly bought the Big Pharma marketing when it comes to levothyroxine. You can read his posts and our comments here, here, and here.   Dr. Repas is exactly the kind of doctor who has  starred in our horror movie, and the kind of doctor that patients have lamented about for years.  Read the  Give Me a Break list of comments made by doctors, as well as further comments on the January 1st blog.

But Dr. Repas is in good company. Doctors have believed the Big Pharma lie about T4-only medications, and against desiccated thyroid like Armour, Naturethroid, etc. for 50 years.  In the patient-to-patient  Stop the Thyroid Madness book, you can read about the first tableting of Synthroid in 1955 and the strategic and successful promotion of T4-only, in spite of the fact that T4 was known to be unstable for decades.

And today, more than 50 years later, very few of us have been untouched by the Big Pharma push for levothyroxine T4-only treatment.  My own mother was suckered, and I was suckered.  And until patients started to make a huge push for desiccated thyroid treatment the last few years, nearly every single doctor around the world had been suckered.

We still have a way to go. But we’ll get there, bit by bit.