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7 examples of buffoonery from The Endocrine Society of Australia about desiccated thyroid

The Endocrine Society of Australia (ESA) came out with their final position paper on Natural Desiccated Thyroid. Ready to throw up at what many hypothyroid patients will state is overt ignorance and condescending arrogance?? Are we not surprised??

Below are 7 excepts from this position paper.

Please note: the following terms are referring to the same product: desiccated thyroid, thyroid extract, NDT, natural desiccated thyroid. By prescription, it’s usually porcine, but there are over-the-counter bovine versions. Thyroxine refers to T4-only, aka levothyroxine, one of five thyroid hormones and a storage hormone alone. In Australia, common brands are Oroxine, Eutroxsig and/or Eltroxin. 

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1) “Desiccated thyroid or thyroid extract is not a pure product, not approved by the TGA [Therapeutic Goods Administration], not available on the PBS [Pharmaceutical Benefits Scheme], not produced by a pharmaceutical company, not subject to existing TGA regulations, has limited quality control, and is marketed as a “bioidentical hormone”, while “bioidentical” has been determined by the FDA in the USA as a marketing term.”

Now who wouldn’t want their meds to be pure?? But wouldn’t you love to know what their definition of pure is in their swipe of desiccated thyroid?  But ultimately, this negatively pudgy paragraph is only a set up for the rest of the paper, which is full of baloney statements.

2) “Is the reason some people fail to have complete relief of symptoms when tests show normal levels simply because there are other causes of fatigue, depression, and weight gain that are mistakenly attributed to the thyroid? Could a placebo effect explain the better relief of these symptoms from thyroid extract?”

Condescending ignorance to the max, say patients. For one, we know that “falling in the normal range” has nothing to do with it–it’s about where we fall in those ridiculous normal ranges that does have something to do with it.

And gee, funny that with an optimal amount of desiccated thyroid or T3 (along with good iron and cortisol levels, which is crucial), that “fatigue, depression and weight gain” goes away as reported by patients for YEARS.

And the TSH lab test, which we know is one of the labs being referred to, is useless while on desiccated thyroid–i.e. optimal, life-changing amounts of desiccated thyroid nearly always push the TSH quite low, which has NOT caused bone loss or heart problems (as a low TSH with Graves disease does). To the contrary, the right amount of desiccated thyroid has REPEATEDLY been known to improve bone and heart health in measurable outcomes.

Finally and more egregious, to use “placebo effect” as a way to explain the numerous and common positive effects patients get on desiccated thyroid is the height of condescending arrogance, many patients would exclaim.

3) “Despite claims of proponents that desiccated thyroid or thyroid extract are superior to thyroxine or combinations of T4 and T3 for most people with hypothyroidism, no controlled clinical trials have been published, and most endocrinologists are concerned that superiority is due to a placebo effect or an effect of overtreatment.”

Claims?? Since when are CLEAR and MEASURABLE health changes on desiccated thyroid by Australian thyroid patients (and worldwide) simply “claims”?? They include lowered cholesterol, better blood pressure, improved bone density, less weight gain (and in some, weight loss)…besides the obvious reported improvements in depression, better energy, softer skin and hair, removal of pain and so many more results.

And once again, the condescending conclusion that if one feels better on thyroid extract, PLUS has measurable changes, then SURELY it has to be in their heads and nothing going on physiologically. Let’s see, I’ve been on NDT for 15 years now, and if this logic is maintained, I have somehow continued to simply “delude myself” for a decade and a half that I have felt much better in my thyroid treatment THAT long…andddd somehow manipulated the measurable results in my health.

4) “Thyroxine is “Monitored; accurate and consistent “; Thyroid Extract is “Monitored; may be inaccurate or inconsistent” “

Yawn. The same weak and unfounded conclusions about desiccated thyroid we’ve heard before. Since when is giving us back all five thyroid hormones “inaccurate” or “inconsistent”? If it’s inaccurate or inconsistent, why have so many seen their lives change on NDT as they find their unique optimal amount, and for years?? If thyroxine is so wonderful, why do millions report continuing or worsening symptoms on the “accurate and consistent” thyroxine?

Oh wait, all of you whose lives have changed are just fooling yourself with placebo outcomes….

5) “The controversies surrounding the safety and efficacy of “bioidentical hormones” such as desiccated thyroid or thyroid extract illustrate the need for further scientific and medical scrutiny of these substances. Until such studies are completed, physicians should exercise caution when prescribing “bioidentical hormones” and counsel their patients about the controversy over the use of these preparations.” 

Really?? Is it SAFE to be on only one of five thyroid hormones when there are numerous reasons why the conversion to T3 can be blocked, either from the beginning or the longer someone is forced to rely on conversion alone??  See those reasons on this page.

Is it SAFE on thyroxine when so many see rising cholesterol, rising blood pressure, bone thinning, heart problems, and/or a lowered immune function?? The “controversies” are those manufactured by clueless Endocrine Societies, NOT by thyroid patients who worldwide have had lives changed on desiccated thyroid if they are allowed to find their optimal amount (which has to have good iron and cortisol levels).

And by the way, there is ALREADY science about the efficacy of NDT or T3 in one’s treatment…BESIDES that fact that a huge growing body of thyroid patients are reporting lives changed in totally positive ways.

6) “In general, desiccated thyroid hormone or thyroid extract, combinations of thyroid hormones, or triiodothyronine [T3] should not be used as thyroid replacement therapy.”

In other words, as the most damning, cruel and ignorant part of this statement, it’s saying that we, the Australian Endocrine Society, don’t give a damn if you are suffering on thyroxine…don’t give a damn if you have genetics which prevent the conversion of T4 to T3 and thus might need T3-only to reclaim your health and well-being…don’t give a damn if you have high RT3 on thyroxine that being on mostly T3 would lower…don’t give a damn if there are a huge growing body of thyroid patients whose lives have changed on thyroid extract (of which many changes ARE measurable)…and don’t give a damn that a healthy thyroid also gives people direct T3 and does NOT force people to live for conversion alone.

Oh and remember the reasoning above that desiccated thyroid is not pure–implying that thyroxine is…yet now we have a widening of the cruelty by lassoing in triiodothyronine (T3) as a product which IS approved by the TGA, yet now is also not recommended??

7) “A registry of adverse events related to the use of bioidentical hormone preparations, including desiccated thyroid or thyroid extract, should be supported by the TGA and could be managed by an external organization, as the TGA does not regulate or monitor these compounds.”

At face value, registering adverse events to any drug is a good thing.

Yet, we KNOW for a fact that most “adverse events” with desiccated thyroid are due to the FAILURE of doctors or research studies to understand that patients have to have the right amount of iron levels or cortisol when raising NDT to avoid those “adverse” reactions….just as patients should NEVER be dosed by the TSH “normal” range, which leaves patients underdosed and thus, continued or growing symptoms of hypothyroidism which could be termed “adverse events”.  Other situations which can cause “adverse events” with NDT include Lyme disease, chronic inflammation, and high heavy metals, of which of course, clueless organizations would simply blame the NDT instead of understanding the results of Lyme, inflammation and/or high heavy metals.

To see this position paper in its entirety: https://www.endocrinesociety.org.au/ESA_Position_Statement_%20Thyroid-Extract.pdf

Rattle, thyroid patients!! Speak loud and clear. Send the URL to this blog post to your private Facebook pages. https://stopthethyroidmadness.com/2017/06/27/7-examples-australian-endocrine-buffoonery/ Make this information even better by your informed comments here. Don’t be silent!!

BEST LIST OF HYPOTHYROID SYMPTOMS on the net (of which many occur while on thyroxine): http://stopthethyroidmadness.com/symptoms 

WHY T4-ONLY HAS RUINED MILLIONS OF LIVES over the decades: http://stopthethyroidmadness.com/t4-only-meds-dont-work

WHY DESICCATED THYROID or even T3 added to T4 has changed lives and how: http://stopthethyroidmadness.com/natural-thyroid-101

TWO MOST WIDELY READ and LIFE CHANGING THYROID BOOKS: http://www.laughinggrapepublishing.com 

43 replies

10 Rockin’ Thyroid Patient New Year Resolutions just for you!

10 RESOLUTIONSHIP HIP!! As we head into a New Year, here are 10 resolutions to potentially help you feel better and stay better as a thyroid patient…and informed patients everywhere will back you all the way, thyroid friends!!

check mark in square1. I WILL GIVE UP THE PATIENT PASSIVITY AND BECOME EDUCATED AND PROACTIVE!

It’s on purpose that this is the first resolution! Why? Informed thyroid patients achieve better results plus become more confident and proactive in their doctor’s office. Both the latter are IMPORTANT to getting well and staying well, say informed patients.  Let the wisdom of thyroid patients in the Stop the Thyroid Madness books and the patient-to-patient website information be your key towards finding your better thyroid treatment spot. (The STTM II book is even written by medical practitioners!)

check mark in square2. I WILL EXERCISE MY RIGHT TO FIRE MY DOCTOR AND FIND A MUCH BETTER ONE IF I CAN.

If attempting to educate our doctor doesn’t work, there’s the option to find a better one. In the United States, thyroid patients do have choice, and they can exercise it. They work to find a better informed or more open-minded doctor. In the UK, patients choose a clinic…and believe it or not, they do have the right to choose a specialist, but they need to fight for their rights to find a good replacement doctor. Says an informed UK patient: if you hear of good Endo, ask for a referral and ensure you contact them to say you only want to see that Endocrinologist. No one else.  In Canada like elsewhere, patients can do the work to find a better doctor, but may have to call to make sure someone is taking new patients. Every province has different rules.

It’s not always easy depending on where you live, but it’s possible!

check mark in square3. I WILL RETHINK THE SYNTHROID/LEVOTHYROXINE BALONEY.

A healthy thyroid makes five hormones, not just one. T4 is a storage hormone meant to convert to the active T3 hormone. It’s T3 which does the trick in removing hypothyroid symptoms. But a healthy thyroid also gives you direct T3 and doesn’t force you to only get it from conversion. There are plenty of reasons why you won’t get enough T3 from conversion, sooner or later, even if at first, some do feel better. That’s why patients all over the world are switching to natural desiccated thyroid (NDT), or adding synthetic T3 to their synthetic T4 and raising the T3 or NDT to find their optimal dose.

check mark in square4. I WILL KEEP TRACK OF MY IRON LEVELS

Informed patients, whether female or male, found out the hard way in groups associated with STTM that their iron levels are important. If iron gets too low, we’ve noticed we might have hyper-like symptoms with NDT or T3 on top of feeling poorly from low iron. Or we just might feel pretty darn awful from inadequate levels of iron. And we know that there are important iron labs we pay attention to, as well as learning where our iron should fall.

check mark in square5. I WILL PAY ATTENTION TO MY GUT HEALTH AS WELL AS WHAT I CONSUME.

The “gut” refers to the journey and bodily activity from what goes into your mouth all the way down to where what’s left comes out. And for those with Hashimoto’s, the majority do better by avoiding gluten. It helps decrease antibodies for many, and lowers the problem of inflammation caused by the gluten. Removing gluten has also improved nutrient levels. Some need additional help with LDN, or selenium, or iodine–it’s individual as to what will work best for any one patient.

Our intestinal bacteria is also important and believe it or not, can have a major role in a strong immune system and even our brain health, besides good thyroid function. Informed thyroid patients nourish their microbiome with fermented food like sauerkraut or kombucha, or consuming yogurt, or taking a broad-spectrum probiotic supplement–all for the good bacteria. Prebiotics are dietary fibers which will help feed the good bacteria, and include foods like asparagus, onions, garlic, dandelion greens, raw chicory root, and even bananas or beans and more. You can do a search for prebiotic supplements, too.

check mark in square6. I WILL PROTECT MY ADRENAL HEALTH.

Our adrenals are the knights that protect us and keep us going. So patients have learned to support and protect them. One important way is to avoid or lower stress the best way we can: resting, meditation, pleasure reading, music, artistic pursuits, laughing, yoga…you name it and it’s individual. When under stress, thyroid patients often use adrenal-supportive herbs, such as Ashwagandha, Rhodiola or more. If there is suspicion of a problem with our cortisol levels, informed patient do saliva testing, not blood, since they found it fit their symptoms better, besides revealed the cellular, useable levels of cortisol.

check mark in square7. I WON’T BE FOOLED BY “NORMAL” RANGES ON MY LAB WORK.

This is a huge area that thyroid patients learned about in the early patient groups and into the present. Namely, we saw that many of us fell in the so-called “normal range” result, yet clear symptoms of the particular problem. The TSH lab rest was one, but there are many other labs and their so-called normal ranges that we won’t be fooled by anymore.

check mark in square8. I WILL LEARN FROM THE MISTAKES OF OTHERS BEFORE ME!

Yes, along the way, thyroid patients and/or their doctors have made a lot of mistakes, and we can learn from them! This page outlines many of those mistakes and what was done about them.

check mark in square9. I WILL PAY ATTENTION TO MY DUCKS–quack quack.

Yes, there are first priority issues to find through testing and working with informed doctors that we need to take care of, which ranges from better thyroid medications to treating cortisol or iron issues correctly to keeping our nutrients at healthy levels. But some have to explore other issues with their doctor to find their sweet spot, ranging from h-pylori to lyme to reactivated EBV to high heavy metals and more. It’s individual and it’s all about our ducks in a row.

check mark in square10. I WILL HAVE HOPE!

There is very good reason to have hope: there are thyroid patients all over the world who have gotten better. Janie Bowthorpe, the creator of the informational Stop the Thyroid Madness website and books, went from having to apply for Social Security Disability to regaining her life again. Hang in there! Learn from worldwide patient experiences and wisdom on STTM and find a good doctor to help!

All the above are just summaries and if more detail is needed, click on the links. For information not linked, there is plenty on the internet. 🙂

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

– Have active Graves disease and you aren’t hypothyroid yet? Go here. 

– Check out all the STTM articles on Thyroid cancer here.

– Come on over and “Like” the STTM FACEBOOK PAGE for daily inspiration and information. 

– Here are patient groups for support and information: //www.stopthethyroidmadness.com/talk-to-others

22 replies

Canadian Thyroid Patients disgusted, frustrated and angry…and suffering.

Screen Shot 2015-10-20 at 1.47.36 PMO Canada! Our home and native land!
True patriot love in all thy sons command.
With glowing hearts we see thee rise,
The True North strong and free!

Canada is a proud country situated just north of the United States with over 35 million residents. And when it comes to the nation’s healthcare system, Canadians have stated they prefer their public healthcare system over the US with a strong majority, ranging from 82% to 91%.

But….in a Gallup poll more than a decade ago, there were different statistics when it came to the “quality” of that healthcare i.e. only 52% of Canadians felt “satisfied” with the quality of the care, and only 13% said “very satisfied”.

So how do informed Canadian Thyroid Patients feel about their healthcare system and/or quality of care?

Understand that all Canadians, whether thyroid patients or not, obtain their healthcare via a publicly-funded system, which means most of the care is “free” when they get it! They obtain most services from private facilities or practitioners. In 1984 and under Pierre Trudeau, the government created federal quality standards of care, called the Canada Health Act. Granted, prescription drugs are not covered for most, nor is dental work or glasses. And there is limited coverage for one’s mental health issues or fertility issues. But on the positive side, all basic care is covered and free (including maternity care) and patients can choose their own practitioners.

So to find out how informed Canadian Thyroid Patients feel about their system and/or their care, I did an informal poll in the former Facebook FTPO Canada group with four questions, below, and some of the answers. Note that by “informed”, I’m referring to patients who learned the hard way that treating their hypothyroidism with one thyroid hormone (T4) was not the way to go, that there are far better tests than the TSH lab test, that there are clear thyroid symptoms that are ignored, and that they, as patients in Canada, care about far better ways of doing it all!

1) For your thyroid treatment only…do you feel that you’ve gotten excellent care? Why or why not?

  • No. The Endocrinologist I saw was horrible…didn’t tell me anything about my disease (Graves) just presented me with “the only” treatment (RAI)…to be followed by the wonder drug, Synthroid (also told me there were no other options).
  • I wish doctors were educated on Natural Desiccated Thyroid (NDT). The dr’s i have talked to about it have no idea what it is and when they look it up on their tablets, they say stupid things about it. One said its for pigs not humans; another said you could get MAD COW DISEASE!! Another one said he knew of one person on it that died of a heart attack!! Wow they need to be in the know. Education is the KEY. I wrote to ERFA and asked them about visiting these dr’s for an information session which I know the Synthroid reps do. They answered that they have a team but only a few dr’s in Toronto have been visited!! I’m seeing an open minded internist but she has no idea what to do with me, so I see a naturopath for help. Its frustrating that dr’s won’t order the blood work for the ND’s to help diagnose as that way it would be covered by OHIP, when the ND orders I have to pay. Annoying to say the least.
  • We are sick and helpless and they are keeping us sick by not helping us………..
  • No, they look at paperwork and if the numbers are within the range the doctor says they should be in you are fine. They never ask how you are feeling.
  • Terrible care. For 8 years, no doctor would pay attention to symptoms because my TSH was “normal”, even though I was at the high end of the Canadian range, which in my area was still higher than what the US now uses. They told me I needed antidepressants, not thyroid treatment. When I did finally get a couple of results higher than normal TSH, they ignored them, and I wouldn’t even know about those results if we didn’t have access to our online test results in BC.
  • No and also yes. No – not from Endocrinologists or GPs. Yes – from a Naturopath (ND). Endos didn’t run all the right labs, or ignored the labs and my symptoms. Naturopath treated me like a whole person.
  • No. Too much reliance on the TSH. Have clearly been hypothyroid since the mid-80s, but didn’t get treatment at all until 2011. Even then, my TSH was “normal”, but I was desperate and had a dr. willing to at least try me on a low dose since my TSH was near borderline.
  • No. Completely untreated, despite TSH of over 16 because he gets hyper symptoms with the lowest dose of every med (including NDT) and doctors either refuse to believe him or don’t know/can’t be bothered to work to fix it.
  • No. The answer was always another pill rather then believing me when I said I felt it was my thyroid was causing issues. It’s better now that I have a good ND…but he is still limited and get tired of going back and forth between docs to get answers.
  • They care about their numbers. Depression, weight, aches, pains, fatigue, hair loss….no one fought for me and my health. I was treated for symptoms of all the above but almost felt like (with what they implied) it was my fault….lack of exercise, not perfect diet, single mom (at the time so depression was put on that) it’s criminal really what they let things get to!!!
  • No, too many think it all revolves around the TSH
  • No, I didn’t get excellent care – even though I have a goiter on the left side and several nodules, one over 10 centimeters, and a biopsy to check for cancer, I still am not getting treated because my TSH is normal.
  • No, GPs are terrible and I only found a couple that would prescribe NDT, but have no idea how to treat, so useless! Same as the above, only Naturopaths and a few functional Doctors!
  • I have found most Docs I’ve seen…..and there have been a lot…..are completely ignorant about thyroid disease. They rely on TSH and Synthroid and know nothing about conversion issues, iron issues related to thyroid, adrenal issues or much else. They also know nothing about NDT or how to dose and what labs they should be doing. My two Naturopathic docs that I have used (because I could not rely on a regular MD or even a so called “Specialist” who was an Endocrinologist) are very aware of these issues thankfully. It took me many years to realize it was actually my Doctor’s lack of knowledge that was keeping me ill.
  • [And some simple “no’s”.]

2) Do you feel Canadian doctors “as a whole” are informed about proper thyroid treatment, or not?

  • No. My GP was concerned about all my symptoms but had no clue they were thyroid related. Oh, and if the UBC locums I’ve seen are any indication of the future, it’s not getting better.
  • No, I asked about NDT and she did not even know what I was talking about, nor did she know about Cytomel.
  • Not. Also, it’s a very big struggle to get anything except TSH tested.
  • I can’t really say “no” as I don’t think the issue is actually education. The bigger issue is that there is essentially only one insurance provider for each province – and since that provider is the gov’t the doctors are restricted in how they can treat. So even those educated or who want to go outside the guidelines aren’t able to do so (not like in the US where they can just be outside of all networks).
  • No. Just like drs in every other country, they’re all riding the utterly useless TSH and Synthroid train.
  • Hell no…..otherwise we wouldn’t be requesting ndt or endo referrals, blood labs and such. They made me to think it was in my head.
  • Not informed at all.
  • No, they are quite limited in their knowledge, it seems. 3 I haven’t found a good doctor yet – I’m in BC 5. I would like to see doctors be freed up to treat their patients based on their symptoms and not TSH.
  • [And some simply “no’s”]

3) What kind of doctor (specialty) in Canada do you feel gives you the best care as a thyroid patient..even if it’s not perfect, but better than others?

  • GP. I have seen him for over 20 years and he was at least willing to try something different and order the needed tests. He looked at the research I brought him and has even high-fived me about the progress I’ve made.
  • I finally found a naturopath that actually attempts to solve my issues. And he respected my wishes in terms of using natural thyroid.
  • Naturopath – unfortunately they can only prescribe thyroid meds in BC, and in Ontario once they can all get through the exam. See #2 – they can actually be outside the usual network.
  • Private integrative MD $$$ paid by cash out of pocket
  • GP
  • Maybe an ND? (still looking)
  • ND has more knowledge then ENDO/GP
  • Haven’t tried others (others said this)

4) For those who have experienced BOTH Canadian and US healthcare as a thyroid patient only: what did you notice about either?

  • Haven’t personally experienced but know many, many thyroid patients who do – and freedom of choice seems to be the thing Americans have that Canadians don’t. Also a LOT easier to order your own thyroid meds in the US.
  • [None of the other respondents have experienced both systems. Maybe you have who are reading this and can comment??]

5) What would you like to see changed in the Canadian healthcare system as a thyroid patient?

  • Better training. Make it less hard to get NDT…in fact, present that to patients as an option. Make all the tests available to everyone without fees so that we can correctly manage our disease. An understanding that as healthy well treated patients, we have much more to contribute to society as a whole…maybe if the ‘powers that be’ understood that, we could get better treatment.
  • I question the fact that we Canadians only have ERFA thyroid as an option as to the U.S. Having a few NDT manufacturers to chose from. In terms of our healthcare, yes we have free healthcare but since learning about NDT, I’ve had to put out hundreds because it seems the only ones willing to listen to our plight is functional or ND’s. I would love it if MD’s and endos alike stop looking at us like we have 3 heads and listen to out symptoms and relate them to thyroid.
  • There are epidemic number of people with this disease. They need to have specific clinics, so care is more regulated and specific
  • Better understanding of hypothyroidism and its treatment.
  • Discarding of TSH as “the test” for hypothyroidism.
  • Better understanding of Hashimotos, and readily available testing for it.
  • Doctors trained to give a full thyroid panel where the patient’s symptoms are ongoing and they cannot identify the cause.
  • Doctors trained to UNDERSTAND the full thyroid panel, hormone ratios, interactions with iron and ferritin.
  • Doctors educated about how some patients don’t correctly convert T4 to T3 in sufficient amounts. Removal of the vilification of NDT – let the patient choose, and try an alternative if the first choice doesn’t work.
  • Everything. I did not receive any help with my thyroid except given Eltroxin, a T4-only med. The doctors do not know anything about the thyroid and trust the lab’s TSH only. I have not seen or been offered to see any Endo and this has left me in years of depression, bone deep fatigue for years -approximately 20 years. There is no one to turn to and have to travel if I find one.
  • No more reliance on TSH, especially when initially determining if someone needs treatment and when they are being treated by any T3 containing meds including NDT.
  • None of them seem to get that a suppressed TSH is normal when treating with T3. Understanding that a lot of people with hypo even if they are deficient in T4 also can’t convert it to T3 and Synthroid treatment won’t help.
  • Most don’t even seem to understand T4 is useless until it is converted. For most people NDT or T3 only meds should be the first line treatment!
  • Even veterinarians don’t rely on the TSH test! Noticed some doctors of psychology seem to recognize TSH is an unreliable test, so not sure why MDs in Canada are relying on it. Treat according to symptoms with alternate testing to support care that is proven and helping over 300,000 thyroid patients better than current. Note that drugs in Canada not being tested for ingredients or standards say CBC. Cost of testing and treatment needs to be subsidised for Canadians.
  • Free T3, Free T4 and antibody testing as standard for diagnosing and treating with RT3 testing easily available. And it would be really nice if doctors actually *understood* how to use these tests.
  • More understanding, testing and treatment of adrenal issues which are related to thyroid issues. I suspect my husband’s hyper with treatment reaction is due to adrenal issues, but the dr. refuses to test.
  • That ND’s were brought in more for my health care. That Endos/GP’s would actually do some research and learn more about the importance of T3. That Health Canada wouldn’t tie GP’s to sticking with guidelines for treating EVERY patient the same since we are all different. That doctors would get educated that diet plays a huge role in thyroid health. That doctors would understand that my issue is an Autoimmune disease and there are steps to calm the immune system down.
  • More teaching of symptoms and finding out what works so we can get back to being functioning people again.
  • Options. And to be taken seriously. They obviously care about personal client health…..act like it.

And the summary we can conclude from Canadian Thyroid Patients?

Granted, this was a small and informal poll. But it does give the strong impression that

  1. Informed Canadian thyroid patients are disgusted, frustrated and angry…and suffering.
  2. No matter how great one’s national healthcare system may seem to be, “free” doesn’t equal “quality”, nor do “strong outlined governmental principals” equal “wise treatment protocols”…as we’ve seen with thyroid issues and thyroid patient care.
  3. Canadian healthcare practitioners, just like any other country, need a far wiser understanding of the following:
  • the use of Natural Desiccated Thyroid or T3
  • why using just the TSH is inadequate
  • which lab tests really are most important, like the Free T3 and Free T4
  • how lab results have nothing to do with simply “falling in the normal range”
  • how symptoms are extremely important
  • that it’s not just “all in the patient’s head”
  • to take the patient experience more seriously
  • why Synthroid has been quite inadequate for most…sooner…or later.
  • understanding how common adrenal issues (adrenal fatigue) can be, and how to properly treat it

It’s all right here, Canadian doctors, if you are willing to listen to the wisdom and reflection of patients: //www.stopthethyroidmadness.com/things-we-have-learned And perhaps the new Prime Minister, Justin Trudeau, will have listening ears?

Janie's Signature SEIZE THE WISDOM

  • Canada’s own version of Natural Desiccated Thyroid is made by Erfa. But unfortunately, patients have reported that some batches have resulted in a return of symptoms. This blog post was active for quite awhile about that problem with certain batches of Erfa!!
  • Come on over to Like the STTM Facebook page to get daily inspiration and information from the FLAGSHIP of worldwide patient experiences and wisdom from which all other websites and groups borrow. lol.

Stop the Thyroid Madness

79 replies

Read the mind-shattering realization by thyroid patients about what T4-only did to their hearts!

Screen Shot 2014-06-16 at 9.54.22 PMWhen my mother was in her 60’s, she had to have a heart procedure. It was scary. And at the time, I found it all very odd. There is no reported history in any of my ancestors of heart problems! Where did this anomaly come from?

It was only years later than I knew: her 30 odd years of T4-only use, which in her case was Synthroid. Not only did being on T4-only cause a daily need to nap, she was also totally dependent on antidepressants (which in turn made her emotionally flat) and she always had a weight problem. And, it caused high cholesterol and heart issues!

Today, patients realize that connection between their T4-use and heart-related problems. Here is what thyroid patient Carla sent me as one of many examples of a relationship between heart problems and being either hypothyroid or on a poor treatment with T4:

I had been on Synthroid for 12 1/2 years when I began to see certain problems coming along and getting worse. For one, my heartrate seemed to be rising. There were even times I literally felt like it was going to jump out of chest. Then there were chest pains. I just knew I was going to be one of those female heart attack statistics. I went to my family doctor, an Endocrinologist and a cardiologist. Hated driving in traffic to get to the cardiologist. But I got a fancy diagnosis of Supraventricular tachycardia (SVT) and worried myself to death.  Beta blockers were on the menu.

Fast forward, I found Stop the Thyroid Madness and then the FTPO forums, and convinced my doctor to start me on Natural Desiccated Thyroid and let me raise it to find the right amount for me. She was super worried about my heart in using NDT. I wasn’t because I had read how others had safely used it, and I followed my raises carefully. And I was right. My heartrate became normal! Normal!! I luckily didn’t have adrenal fatigue. 

I think back about all those years on Synthroid and realized that I had been seeing other problems almost from the beginning! I had depression. I had low iron. Minerals low. And I had doctors who dismissed me. And of course, I was a TSH disaster. TSH was normal; I was not. Year after year. Then I progress into heart problems? The makers of T4-only should be ashamed. 

And there are plenty of studies underscoring a connection between being hypothyroidism and heart issues:

  1. This abstract of the study underscores honestly that “restoration of normal thyroid function most often reverses the abnormal cardiovascular hemodynamics.” Cardiovascular involvement in General Medical Conditions: Thyroid Disease and the Heart
  2. This study outright admits that “Long-term levothyroxine treatment in young adults with congenital hypothyroidism is associated with impaired diastolic function and exercise capacity and increased intima-media thickness”  Long-Term Cardiovascular Effects of Levothyroxine Therapy in Young Adults with Congenital Hypothyroidism from The Journal Clinical Endocrinolgy Metabolism,
  3. This study states that “subclinical hypothyroidism is associated with impaired left ventricular diastolic function at rest, systolic dysfunction on effort, and enhanced risk for atherosclerosis and myocardial infarction.” Whoa. And continued hypothyroidism is what all-too-many thyroid patients report from being on T4-only Effects of Subclinical Thyroid Dysfunction on the Heart from Annals of Internal Medicine
  4. This one has always blown us away. It’s called Low-T3 Syndrome; A Strong Prognostic Predictor of Death in Patients With Heart Disease and underscores why the thyroid hormone T3 is so very important for one’s heart. Natural Desiccated Thyroid, just like a healthy thyroid, provides direct T3!

And there are many, many, many more studies showing the connection between heart problems and hypothyroidism. And eventually, we might see these studies catch up even better about the connection between T4-only and heart problems. The body is not meant to live for one of five thyroid hormones alone.

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Dr. Melnick discusses alarming article from Harvard about the use of the TSH and thyroid treatment!

(Note: if you are reading this via email notification, do NOT reply to the email if you want to comment. Click on the title of the blog post, which will take you directly to the blog post. Scroll down to comment there.)

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P4089852Dear STTM Blog readers, I am so fortunate to talk to many wonderful individuals because of Stop the Thyroid Madness. And recently, I had a conversion with the very insightful Dr. Hugh Melnick of New York City.

Dr. Melnick brought my attention to a very disturbing article titled “For borderline underactive thyroid, drug therapy isn’t always necessary” that came from the Harvard Health Letters in October 2013, You can see it here: http://www.health.harvard.edu/blog/for-borderline-underactive-thyroid-drug-therapy-isnt-always-necessary-201310096740.

This conversation between Dr. Melnick and I may be of great interest to STTM readers, besides alarming once you see what is being stated in this article and suggested as treatment guidelines. It’s simply Thyroid Treatment Dark Ages!

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JANIE: Hello Dr. Melnick. I’m so glad to chat with you! Can you tell our readers a little about yourself?

DR. MELNICK: I am a reproductive endocrinologist who has been in medical practice since 1976. As the medical director of Advanced Fertility Services In Vitro Fertilization Center in New York City, I have always been impressed by the large number of  infertile women that I have seen over the years, who are symptomatically hypothyroid, and who conceive after treatment with thyroid medication.

Although I did my medical training at a point in time when the TSH test and Synthroid were just being introduced into clinical practice, I was trained by one of the most widely respected endocrinologists of that era, Herbert Kupperman, MD, Ph.D. to diagnose and  treat patients with potential thyroid issues according to their symptoms, rather than solely by their blood test results.  His vast clinical experience, and subsequently mine, as well, is that treatment with Natural Desiccated Thyroid (NDT) gives far superior symptomatic improvement for the vast majority of patients. Furthermore, the dosage of thyroid medication should always be based upon a patient’s clinical symptoms and not the TSH level.

JANIE: That greatly impresses me when I learn of doctors like yourself who understand the efficacy of Natural Desiccated Thyroid as well as the problems with using the TSH lab test.  You recently brought my attention to what was written just a few months ago by Heidi Godman, the Executive Editor of Harvard Health Letter (see introduction above). Can you expound on what Ms Godman meant by “borderline underactive thyroid”? 

DR. MELNICK: Actually, Ms. Godman is mistakenly defining hypothyroidism by TSH levels, rather than by a patient’s clinical symptoms. It is obvious that there are many symptomatic and genuinely hypothyroid individuals, who have normal TSH levels, and who experience relief when given a proper dose of the appropriate thyroid medication. The TSH level only diagnoses a type of hypothyroidism that is due to failure of the thyroid gland itself, or a failure of the pituitary gland.

In my experience, the most common form of hypothyroidism is called subclinical because the TSH levels are in the “normal range.” It is a genetic condition, usually passed through the mother and manifests itself later in adulthood. In subclinical hypothyroidism, the individual’s cells need more active thyroid hormone–T3–than their bodies are able to produce in order to function properly. Therefore, supplementation with a thyroid medication containing T3, in the proper dose, will relieve the troubling symptoms and allow the cells to function optimally.

Again, basing the dosage of thyroid medication on TSH levels is incorrect. When treating hypothyroidism, we are not treating a condition like diabetes, in which the insulin dose is based upon the patients’ blood sugar levels. Although they are both endocrine disorders, they are vastly different conditions and cannot be treated in the same fashion, although many endocrinologists still insist on doing so!

JANIE: In the article, Godman quotes that prescriptions for levothyroxine have increased from 50 million in 2006 to about 70 million in 2010, and a similar increase has occurred in England and Wales. She then calls this increase in treatment “pretty risky business”, citing irregular heart rhythms, insomnia, and loss of bone density”. What is she implying there?

DR. MELNICK: I think that the observed increase in the use of the thyroid medication Synthroid is due to the fact that hypothyroidism is a very common condition, affecting at least 35% of the female and 10% male population.  Considering the population estimates for 2013 is 317 million people in the U.S.A. and the population of the United Kingdom is estimated to be 70 million, 28% of the population in the U.S.  and 23% of the population in England, (assuming one prescription per year per individual patient) are being treated for hypothyroidism. This is actually a bit less than the estimated incidence of hypothyroidism in this country. I also believe that more cases of hypothyroidism are being found because people, in general, are more informed about the symptoms of hypothyroidism and seek treatment.

In my opinion, Ms. Godman erroneously categorizes treatment of hypothyroidism a “pretty risky risky business”. The risks of not treating hypothyroidism is, in fact, more potentially injurious to a patient’s health! 

For example, the increased risk of heart disease in untreated hypothyroid individuals is a solid example of why hypothyroidism needs to be treated. The examples that she cites, namely, irregular heart rhythms and insomnia, are found in many people with hypothyroidism before treatment and are cured by adequate thyroid treatment. The symptoms that she mentioned are not exclusively associated with hyperthyroidism. The loss of bone density claim comes from studies of hyperthyroid individuals, who because of their hyperthyroidism and excessively high metabolic rate, may develop osteoporosis.

JANIE: The next part of this article is alarming. It refers to a particular “clinical practice guidelines” authored by Endocrinologist Dr. Jeffrey Garber, an associate professor of medicine at Harvard Medical School. These guidelines come from a task force representing the American Thyroid Association and the American Association of Clinical Endocrinologists. The first guideline is as follows, and goes completely against what informed thyroid patients know to be wise. Can you comment? 

1) The best way to check for hypothyroidism is to look at the level of thyroid stimulating hormone (TSH) in the blood, and when the TSH level is above 10 mIU/L, there’s uniform agreement that treatment with levothyroxine is appropriate. 

DR. MELNICK: Firstly, clinical practice guidelines are merely suggestions that have been developed to help physicians with limited experience diagnose and treat medical issues. Clinical guidelines are like a cook book, which describes a recipe that makes a simple meal, but not necessarily a complex and elaborate feast. That said, it is quite obvious that the way in which I diagnose and treat hypothyroidism is quite different than that which is suggested by the above referenced societies.

Although I do perform a complete battery of blood tests, including antithyroid antibodies, iron, vitamin B12 and vitamin D levels, I believe that a clinical approach – listening to a patient’s symptoms and treating a patient accordingly – is, in some ways, more important in diagnosing and properly treating patients suffering with the symptoms of hypothyroidism. If a physician only looks at a patient’s blood tests, without listening to the patient’s symptoms and asking them appropriate questions, many people who legitimately need thyroid medication will be denied proper treatment. That is precisely the reason that so many people come to me suffering with all the classical symptoms of hypothyroidism and tell me that their doctors have tested their thyroid and found them to be “within normal limits”.

It is not surprising when these very same patients experience symptomatic improvement when treated with adequate doses of NDT. I rarely treat patients initially with Synthroid. The primary reason is that Synthroid, being a synthetic T4 (a weak thyroid hormone- not chemically identical to human T4), must be converted into T3, the potent form of the hormone that enters every cell in the body and makes the cells of the body function normally. Unfortunately, many individuals are unable to successfully convert T4 into T3, so the patients’ symptoms remain, yet the TSH level is normal.

Natural desiccated thyroid (NDT) is made from the thyroid glands of pigs, which produce thyroid hormones chemically similar to that found in humans and does contain T3. Porcine (pig) thyroid gland also contains other thyroid hormones and proteins, which, in my experience are much more effective in relieving the symptoms of hypothyroidism than synthetic T4.  Who can argue that a natural treatment, if availble, is to be preferred over a synthetic one.

JANIE: I loved the analogy above to a cook book, Dr. Melnick! Garber’s second most-emphasized guideline is the following, and I would love for you to comment on this as well, as informed thyroid patients would find this very disturbing, as well: 

2) If the TSH level is between 4mIU/L and 10mIU/L, treatment may still be warranted in various situations:  

  • if the levels of actual thyroid hormones in the blood–known as thyroxine (T4) and triiodothyronine (T3)–are abnormal
  • if the bloodstream contains anti-thyroid antibodies that attack the thyroid. These antibodies would indicate a hypothyroid condition called Hashimoto’s disease, in which the immune system mistakenly attacks the thyroid.
  • if there is evidence of heart disease or risk for it. 

Garber is next quoted as saying “Use thyroid hormone for a brief period of time.”  and “If you feel better, you can continue with treatment. If not, then stop.”  That recommendation is quite alarming as well, as it fails to understand that it may not be about stopping thyroid medication, but moving over to a far better treatment with natural desiccated thyroid, which informed thyroid patients know should have been the first treatment of choice anyway. Can you comment? 

DR. MELNICK: In my clinical experience, 99% of patients with TSH levels over 4.0 are quite symptomatic, if questioned about their symptoms properly. Therefore, treatment is absolutely mandatory, both to relieve “quality of life symptoms” as well as to prevent heart disease, lower blood pressure, normalize blood sugar and cholesterol levels, if they are found to be elevated.

Dr. Garber’s recommendations about using thyroid medicine for a short period of time and continuing it if improvement is noted omits two essential factors. The first is that since he treats his patients only with Synthroid, a significant percentage will show no improvement because their symptoms are not relieved because they cannot convert T4 into T3. The second factor is that by following TSH levels in the blood, a patient may not actually be taking a high enough dose of thyroid medication, yet  will show low TSH levels in the blood. The level of thyroid hormones circulating in the blood-whether they are bound or free- only indicate absorption of the medication and give no indication as to the amount of T3 entering the cells. When an individual gets enough T3 into their cells, their symptoms will improve.

The only way to measure the correct dose of thyroid medication, in addition to noting improvement in symptoms, is by measuring the Basal Body Temperature and by the measurement of nerve conduction velocity (Thyroflex Test). This is a noninvasive test  which gives a good indication of dosage adequacy. The slower the patient’s nerve conduction velocity, the higher the dose of thyroid medication that is required.

One main point that must be noted is that thyroid medicine may take up to twelve weeks in order to experience some degree of symptomatic relief. The other is that the patients’ dosage should be increased gradually and in divided daily doses until symptomatic relief is  experienced. The dose should be reduced if the patient experiences rapid or irregular heartbeat, shakiness or anxiety. These symptoms will resolve in several hours and are not harmful.

Hashimoto’s or autoimmune thyroiditis is a much more complex clinical condition, in that symptoms in many individuals may vary, from hypo to hyper from time to time. Treatment with thyroid hormone is usually needed, but some patients, in the early stages of thyroid autoimmunity, may be fairly asymptomatic.  As the condition progresses, symptoms will eventually be experienced. The levels of antithyroid antibodies do not correlate with the severity of a person’s symptoms.  Antithyroid antibodies never disappear and will always be detectable in the blood.  There may also be gluten sensitivity in some instances, so dietary factors may be important. When an infertility patient is found to have antithyroid antibodies, whether they are symptomatic or not, I always treat them with NDT since it does help them to conceive and seems to reduce the incidence of miscarriages.

JANIE: Heidi Godman then states the following about individualized treatment for hypothyroidism, which informed thyroid patients know by years of experience is a recipe for disaster: “That requires measuring TSH four to eight weeks after starting treatment or changing a dose, another TSH test after six months, then every 12 months.”  

DR. MELNICK: I respectfully disagree with both Ms. Godman’s  formula as stated above, as well as with Dr. Garber’s method for diagnosing and treating hypothyroidism. Although the Harvard Medical School is a very prestigious institution, and that the information that they published cited the work of a physician of professorial rank, it is quite contrary to my own clinical experience and that of the many untreated or inadequately treated individuals who suffer with the many debilitating and disturbing symptoms arising from thyroid hormone deficiency.

I say this in jest, but if a patient follows the treatment protocol advocated by Ms. Godwon, they are more like to die of old age before their symptoms of hypothyroidism begin to show signs of clinical improvement .

JANIE: Your last sentence was excellent, Dr. Melnick. Your sage observations and wisdom jive with over a decade of successful patient experiences and wisdom! And we must push AGAINST the guidelines suggested by Dr. Jeffrey Garber. Informed thyroid patients know how disastrous they can be!

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