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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

20 Ways that Hypothyroid or Hashimoto’s Patients are Gaslighted

It would make an incredible horror movie. THE PLOT: stunningly convince hundreds of millions of individuals worldwide that what isn’t a good thing, really is. That what appears to be so, isn’t. 

Or that leaves only look green because of alien filters in your eyes. That ripe apples fall because invisible evil hands pull them down. That fire doesn’t burn your skin–it’s only your imagination, so ignore the fake pain and blisters. 

That giving you only one of five thyroid hormones…a storage hormone called T4 with the name of Synthroid, Levothyroxine, Eltroxin, Oroxine, etc…is all you need to adequately treat your hypothyroid state. 

Because if those in authority say so, it must be so…right?

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The gaslighting of hypothyroid patients for decades

If you have never heard of the term “gaslighting”, it describes a form of manipulation by an individual or enterprise. The result is to cause you to doubt your own intuition, intelligence, perceptions and natural wisdom.

Here’s what gaslighting does: 

  • implies a person in authority knows what he or she is talking about or doing, over your own inner wisdom and observations.
  • makes you question your own self
  • makes you second guess what is going on and your own perceptions
  • spins a false interpretation of reality.
  • tries to put the blame on you
  • makes you feel crazy
  • is a way to benefit the person or enterprise pushing the delusion for their own aims.

20 ways that Hypothyroid or Hashimoto’s patients are gaslighted–which ones are you?

  1. Authoritatively putting you on only one of five thyroid hormones as if it’s an adequate treatment, as if relying solely on “conversion” to get T3 is all you need (Yet all along, there was a proven treatment that contains all five thyroid hormones, including some direct T3, called Natural Desiccated Thyroid. But of course, you aren’t told, or it’s efficacy is grossly misrepresented)
  2. Telling you that Synthroid or Levo etc is the gold standard of hypothyroid treatment i.e. adequate, easy to dose, reliable, then sending you off into the world (Yet for all too many, sooner or later, T4-only meds have been problematic for millions, in their own degree and kind, for over five decades, as reported by patients worldwide about themselves, relatives, friends, etc)
  3. Implying the TSH lab test, aka Thyroid Stimulating Hormone, is a reliable way to diagnose or dose by.  (The TSH is a pituitary hormone, not a thyroid hormone, with a lousy “normal” range, and with a history of lagging behind for years and thus preventing diagnosis, and more)
  4. Implying that those continued symptoms, whether at the beginning or the longer you stay on T4-only, are somehow your fault, about your life situation, or in your imagination (examples in #5, #6, #7, for example. See the best list of symptoms on the net)
  5. Telling you that you need to “eat less” or “exercise more” (as if easy weight gain is totally your fault or in your control, instead of the fault of a poor treatment with T4, or the use of the TSH)
  6. Sending you to a therapist (as if your hypothyroid-caused depression isn’t related to your T4-only treatment…when it definitely can be… or can be due to the lack of a diagnosis)
  7. Saying your afternoon fatigue is due to “being a mother” or “part of getting older” (yet we see that need for a nap go away for the majority once optimal on NDT or T3 with optimal iron and cortisol)
  8. Implying that you have “separate” conditions which now need more medications only (like rising cholesterol, higher blood pressure, depression, fibromyalgia, and more…all which can be clearly related to a poor treatment and which either go away or improve, say many patients, once they have T3 or NDT in optimal amounts)
  9. Stating that Natural Desiccated Thyroid (with all five hormones) is outdated and thus a reason to avoid it (Hmmm. Then I guess so is listening to the radio, talking to people live on the phone instead of on Facebook, or sending a real birthday card instead of an internet one…should be avoided since they are outdated.)
  10. Saying you’ll get heart or bone issues if your TSH goes below range while optimal on NDT or T3 (Patients have noted that it’s not only normal for the TSH to go that low when optimal, but they see improved bone and heart health! A low TSH on NDT is NOT the same as a low TSH with Graves disease!)
  11. Stating that it’s rare for anyone to be above 2 grains, aka one grain is 60 or 65 mg depending on brand, so your continued symptoms aren’t related (Yet there are many patients who aren’t optimal until the mid-or-upper 2’s, or in the 3-5 grain range. It’s individual where optimal falls.)
  12. Implying that continued hypo symptoms while on NDT or T3 proves they aren’t needed (There are understandable and correctible reasons.)
  13. Stating that Natural Desiccated Thyroid is not for Hashimoto’s patients (which is contrary to the majority of Hashi’s patients on NDT who have reported great gains once they get up to their optimal amount)
  14. Stating that iodine is the worst thing for every and all Hashimoto’s patients (in spite of those with Hashi’s who discovered that iodine lowered their antibodies if they used it correctly with supporting nutrients. It’s individual and each Hashi’s patient has to find out for themselves). 
  15. Saying that NDT or T3 for those over 60 is dangerous (yet many patients this age range report huge improvements from using it safely and wisely, such as starting low, building in small doses, watching labs, learning how to read labwork, etc)
  16. Implying there’s no such thing as adrenal fatigue/hypocortisolism (yet many get low cortisol, as proven by saliva testing, due to the inadequate treatment of Synthroid or Levothyroxine, and suffer from it.) 
  17. Stating that the use of hydrocortisone (Cortef) in the presence of extremely low cortisol three or more times (as proven by saliva testing) is dangerous or should be kept low (in spite of how patients have successfully learned how to use HC safely and wisely as outlined in chapter 6 of the revised STTM book)
  18. Underscoring that if you are “in range” with your lab result, you are doing great (We learned that it’s where we fall that has meaning, not just being in range.)
  19. Stating that you should not go by what is said on the internet, such as on Stop the Thyroid Madness (STTM) or the books (in spite of the fact that it’s all based on 15 years of repeated, solid, patient reports and wisdom; can include studies to back it up on several pages; has the support of many other practitioners….etc)
  20. Implying you are a “difficult patient” because you dare to state what you have learned that is contrary to what the doctor says (See Things we have learned)

So you see, the horror movie plot has been a reality for hypothyroid patients.

Like a few years ago. A couple saw the STTM book in my vehicle and struck up a conversation with me. She was on Synthroid; he was on Levoxyl–both T4. They had each been on their T4-only treatment for 12 and 14 years respectively. They felt their hypo was perfectly treated and they believe in their doctors. So the other problems they dealt with were separate: his rising cholesterol, her depression, his fatigue, and her weight gain. But of course, they felt those have nothing to do with their T4-only treated hypothyroid, as some of it was their own fault, and their doctors are right…leaves aren’t really green, invisible hands make ripe apples fall, and fire doesn’t really burn.  Gaslighting.

Sad.

  • Check out the best list of hypothyroid symptoms on the net, totally based on reported patient experiences, reliable, and not culled from other cold lists to bulk it up. They can even occur on Synthroid or Levothyroxine, report patients over the years.
  • Have you Liked the STTM Facebook page? One of the most helpful thyroid Facebook page on the internet and based on reported patient experiences and the wisdom gained. 
  • See research that can back up what patients have learned (and there is more on individual pages)

P.S. The photo is an actor portraying a zombie. It’s simply to represent a horror show.

109 replies

The Scandal: Thyroid Patients are Speaking Out, Wall Street Journal, and a new video!

STTM photos of people from video UPDATEDThe push continues, fellow thyroid patients.  And it’s getting louder and more widespread.

This week, Wall Street Journal columnist Melinda Beck, who writes a weekly health column, hit an important gong with her wonderful attention-getting article titled “Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism.”  

“Doctors and patients have been at each other’s throats for decades over how to treat a little gland in the neck–and patients may be gaining ground.” ~Melinda Beck

Beck underscored the sad reality that doctors have been relying “on a single form of treatment for hypothyroidism”, aka T4-only like Levothyroxine or Synthroid.  And it’s been travesty.

Why T4-only as a sole treatment is a scandal

As I explained in detail in the revised Stop the Thyroid Madness (STTM) book, a healthy thyroid produces five hormones: T4, T3, T2, T1 and calcitonin, with T4 being the storage hormone, and T3 being the powerhouse of all the thyroid hormones. In that healthy thyroid, T4 will convert to T3, but the gland also produces “direct” T3.  That is an important distinction.

Yet this “single form of treatment” with simply a storage hormone, which was thrust upon thyroid patients by 1960 (see Chapter 1 in the revised STTM book for excellent historical details), has forced us all to live for conversion alone…and hundreds of millions of us over the past five decades have a paid a hefty price. There are simply too many reasons why the conversion of T4 to T3 can be impaired, ranging from genetic factors, to diet, to stress, to illness, to age.

That is exactly what compelled me, in 2002, to start what is now the largest active thyroid group still on Yahoo, and later, the largest “system of thyroid groups” on Facebook, called the FTPO (For Thyroid Patients Only) groups–the only system of patient groups endorsed by Stop the Thyroid Madness.

How patients are dismissed

In addition to quoting a few doctors, Beck interviewed thyroid patient/advocate Mary Shomon, who stated “It’s so much easier to tell a woman to get up off the couch or hand her a prescription for antidepressants.” Also interviewed was thyroid patient/advocate Dana Trentini, who feels her second pregnancy ended in miscarriage due to only being dosed by the TSH, which in her case was left high–another hefty problem in the treatment of thyroid patients.

Major kudos to Antonio Bianco, president of the American Thyroid Association

When the American Thyroid Association (ATA) has been the height of disappointment for informed thyroid patients with it’s strong emphasis on “synthetic thyroxine” as well as its poor details about NDT, it was extremely refreshing to see him quoted as stating: “I credit this to patients pushing doctors and saying, ‘You don’t know what you’re talking about. I don’t feel fine’.” followed by Beck’s words that Bianco ‘has refocused the research to search for answers for such patients’. You give us a light of hope, Dr. Bianco.

Seven areas that patients beseech their practitioners to be wiser about…

1. Levothyroxine, Synthroid and all other T4-only medications

They have failed far too many of us. It’s not about exercising more, eating less, seeing a therapist or putting us on a myriad of other medications to treat conditions which are actually the results of that failure. Learn from us.

2. Natural Desiccated Thyroid (NDT)

What has been vividly changing lives is Natural Desiccated Thyroid (NDT), not T4-only medications. NDT has been around since the 1890’s–it worked then and it works now. Learn from us.

And to the contrary, NDT’s T4 to T3 ratio of 80/20 (as compared to the human ratio of 93/7) has not been a problem for the vast majority. Instead, problems are usually “revealed” on NDT due to a cortisol issue and/or low iron–both common problems that arise with patients who have been put on T4-only, or who have been left undiagnosed.

3. The TSH lab test

The TSH lab test is and has been as much a failure for thyroid patients as has T4-only. To be held hostage to a “pituitary hormone” has been a complete **nightmare** for thyroid patients. Even one of your own esteemed colleagues, Jeffrey Dach MD, as well as many others, know the travesty of the TSH as explained in chapter 4 of the practitioner-written book Stop the Thyroid Madness II.  Learn from us.

4. Lab tests that count, and how to read them

It’s the free T3 and free T4 lab tests which have been superior for either diagnosis or dosing, not the TSH. And a key observation noted by informed thyroid patients is “where” a result falls in the so-called “normal” range that has meaning. Many key lab tests have helped us in our journey towards feeling wonderful again. Learn from us. 

5. Symptoms that go along with hypothyroidism

To the contrary, there are clear symptoms that go along with the right lab tests to reveal hypothyroidism. Depression is overtly common in an undiagnosed or poorly treated hypothyroid state, as is afternoon fatigue, poor stamina, dry skin, hair loss, rising cholesterol, rising blood pressure, painful joints, and/or others. How do we know as informed patients? Because they go away when optimally treated on Natural Desiccated Thyroid. Learn from us. 

6. T3 added to T4

Adding T3 to T4 has proven to also be far superior to T4-only, and to the contrary, it has NOT been “difficult to sustain therapeutic levels” if practitioners will simply learn from their patients how to use T3-only with T4. The same goes for the even more superior Natural Desiccated Thyroid. Learn from us.

7. Listening to your patients instead of dismissing them

Finally and most importantly, though we appreciate the intense medical training that all our doctors have received, it’s time to consider that we, as informed patients, might have something valuable for our doctors or practitioners to consider and open their minds to. It’s not just about clinical trials. It’s time to RESPECT AND LISTEN TO YOUR PATIENTS, THEIR EXPERIENCES, CLINICAL PRESENTATION, AND THEIR OWN INNATE WISDOM. Learn from us. 

ANNOUNCING: A new powerful YouTube video in honor of thyroid patients worldwide: https://www.youtube.com/watch?v=2n0NfAUyOKo   Please share this video to your blogs, private Facebook pages, groups, Twitter, email. Join the PUSH!

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

 

 

– Head on over the Stop the Thyroid Madness Facebook page and Like it for daily inspiration and information!

43 replies

Oh Jolly. Guess What the Endocrine Society Has Spouted This Time?

“A great deal of intelligence can be invested in ignorance when the need for illusion is deep.”  ~Saul Bellow

STTM ignorance graphicAnd here we go again.

On April 1st, 2016 (which is April Fools Day–how appropriate), out comes an article in the Journal of Clinical Endocrinology and Metabolism which presents the latest updated position statement of the Endocrine Society, titled Compounded Bioidentical Hormones in Endocrinology Practice: An Endocrine Society Scientific Statement.

In other words, their last position statement on certain compounded medications came out in 2006, and this one trumps that one. And the implication is towards “increased regulatory oversight of all bioidentical hormones.”

Sounds innocuous enough, right? Certainly they are trying to be protective of us, right?

First, in case you don’t know much about the Endocrine Society, it’s existence began a century ago and is today the oldest “largest global membership organization representing professionals from the intriguing field of endocrinology.” Members come from 110 countries representing approximately 28,000 members, with 40 percent of them located outside the United States. They include scientists, physicians, educators, nurses and students. And you’d think that a society with such a vast array of members from 110 countries might have some innate wisdom, right?

Gulp.

The first gist of the article is first about compounded sex hormones…and here’s my summary of their position:

  1. There is no other rationale for compounding your sex hormones other than having an allergy or intolerance.
  2. Compounded hormones are risky.
  3. Compounded hormones are dangerous.
  4. Compounding Pharmacists, who are licensed professionals, are thus dangerous if their product is dangerous.
  5. Reported successful patient experiences (and their improved lab results) with compounded sex hormones has no validity; only “randomized, double-blind, placebo-controlled trials” have validity.
  6. Because there are no FDA-approved testosterone preparations for women, it should be completely avoided…so I guess the opposite logic applies?? i.e. that one should embrace FDA-approved medications like statins or the antibiotic Cipro with all their numerous side effects in all-too-many??
  7. Synthetic estrogen and synthetic progesterone is the way to go.
  8. Big Pharma products are the way to go.
  9. Give all your money back to Big Pharma

If you have a subscription to Medscape, here’s a good summary of what the Endocrine Society stated about compounded sex hormones, including DHEA, but I think my summary above says it all.

But here’s where it really gets nauseating for informed thyroid patients

Says the same Endocrine Society, as outlined in the Medscape article above (instead of my interpretation):

  • Levothyroxine (LT4) is bioidentical and a highly effective and safe therapy and is the treatment of choice for hypothyroidism. The complex tissue-specific deiodinase system converts T4 to T3 and supplies the proper amount of T3 to each of the body’s tissues according to its requirements.
  • Clinicians should evaluate patients with persistent symptoms (despite adequate LT4 therapy) for other causes of their symptoms and encourage patients to engage in healthy lifestyle measures.
  • Some of these patients may benefit from combination LT4/LT3 therapy, desiccated thyroid hormone, or compounded thyroid hormone, as long as symptoms and thyroid-stimulating hormone (TSH) (free T4) are monitored carefully.

Oh really??

To the contrary, millions of thyroid patients from the past 50+ years have noted and/or reported on the following while on T4-only:

  1. Unresolved or accumulating problems like depression, adrenal stress, anxiety, easy weight gain, difficulty losing weight, easy fatigue, poor stamina, easy sickness/slow recovery, joint pain, painful feet, hair loss, dry skin, rising cholesterol, rising blood pressure, heart problems, kidney problems, other mental health issues, and hundreds more as reported here.
  2. A poor conversion of T4 to T3 due to a myriad of real biological and normal life events which can negatively affect that deiodinase conversion of T4 to T3, such as aging, the normal stress of life circumstances, inflammation, low iron, and just plain bad genetics, to name a few. The body is not meant to live for conversion alone!
  3. Lousy outcomes from being held hostage to the dubious “normal TSH lab range” are rampant. The TSH is a pituitary hormone and can never discern if all our tissues and organs are getting enough thyroid hormone from conversion alone.

So all of you who are esteemed members of the Endocrine Society, we as informed thyroid patients who live in our own bodies and have our own intelligence and wisdom,  challenge you to consider the following questions:

  1. Can you really call T4-only “effective and safe” in light of the myriad of continued hypothyroid symptoms that patients have noted or reported for 50+ years while on Synthroid, levothyroxine, Tirosent or any other brand of T4-only…sooner or later?
  2. In light of the fact that T4-only results in numerous organic and tissue problems like depression, a low metabolism, joint pain, high blood pressure, rising cholesterol and so much more…does it really meet the body tissues requirements?
  3. If T4-only meets all the body’s tissue requirements, why does nature cause a healthy thyroid to give not just T4, but also direct T3 and calcitonin?
  4. If all those continued and persistent hypothyroid symptoms on Levothyroxine are due to “other causes” or “unhealthy lifestyle choices”, why in the world do these same individuals see them all go away when they get on Natural Desiccated Thyroid and find their optimal dose (which has nothing to do with the TSH)??
  5. Why is it that when patients are held hostage to the dubious TSH range, they continue to have clear and/or rising hypothyroid symptoms?

JanieSignature SEIZE THE WISDOM

– Have you Liked the Stop the Thyroid Madness Facebook page? It gives you daily inspiration and informative information based on years of thyroid patient experiences and wisdom as record on the Mothership of Thyroid Patient Experiences: STTM!

– You can comment to the Endocrine Society as to their views right on their own Facebook page: https://www.facebook.com/EndocrineSociety/

– Check out this video by Hugh Melnick MD about the superiority of NDT over synthetic T4: https://www.youtube.com/watch?v=muorjvQ4DUE

– Share this blog post below. Let’s spread the word about this!

50 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?

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  • 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

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