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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

Taken off Armour; put on T4–heartwrenching! And young Australian’s plea

STTM emails

(This page was updated in July 2015! Enjoy!!)

I get a lot of emails, and some are quite heart-wrenching. And though I can’t get into email advice and still have time to do what I do, I so appreciate reading what I get.

Here is one from a gal who, after ten successful years of Natural Desiccated Thyroid, was put on Synthroid and went totally downhill! Mental health issues like bi-polar, excess weight gain and more. THIS is why patients have to become knowledgeable (which is what Stop the Thyroid Madness gives you), instead of putting all your eggs in the doctor’s basket. And yes, she agreed to let me post this.

Hi Janie,

I just found your website and I’m going to order some copies of your revised STTM book. I’m nearly forty-eight years old. I was diagnosed with hypothyroidism in 1985 shortly after the birth of my first son. My doctor put me on Armour, and for ten years I was fine. When my doctor retired, I transferred my medical records to his son’s newly opened practice. His son took me off of Armour and put me on Levothyroxine, although I was having no problems, because he said it’s “better”. He basically used the same wording you quote on your website, “Armour is ‘unreliable’, ‘inconsistent’, ‘dangerous’, ‘outdated’…”. Naively, I trusted him.

Since starting Levothyroxine and subsequently, the brand-name Synthroid, I have been diagnosed with the following:

– Morbid obesity (I have gained 100+ pounds in 15 years with no prior history)
– Menstrual problems (heavy, prolonged, painful periods)
– Uterine fibroids
– Bipolar Disorder
– Generalized Anxiety Disorder
– Sleep Apnea
– Posterior Tibial Tendonitis (plantar fascitis)
– Osteoarthritis

I was beginning to believe that I have fibromyalgia and chronic fatigue syndrome!

Without going into a lot more detail, I’m taking nine prescriptions for these health problems. Now I realize that most, if not all, of these “health problems” are actually symptoms of improperly-treated hypothyroidism.

All I can say is, THANK GOD FOR YOUR WEBSITE! I’m going to talk to my doctor and take a copy of your revised STTM book with me. I’m going to make him listen to me. If he won’t cooperate, I will transfer my medical records elsewhere. If I can’t get any satisfaction from any other doctor in my area, I’m going to take matters into my own hands with the help of your book and website. I talked to my psychiatrist today (to get refills for my meds) about my suspicions — he told me that he believes I could be correct (hmmm — that in itself is quite disturbing).

God bless you Janie — I will remain a “fan” forever and I promise to send you additional follow-up information.

And here’s another one from a 24 year old in Australia who badly needed what STTM gives her:

Thank You! As a person who was diagnosed with hypothyroidism when I was sixteen, I’ve been through the works. I used to be a dancer, singer and a gymnast. All of that has gone by the by, and I am now plagued with debilitating bone problems and white hairs. I have been so confused. Then I was angry. Then I was just depressed. I’m twenty-four. I was sitting around, waiting to die. Then I came across your website. I want to say thank you. Thank you so much for being angry and doing something about it. I can never do anything about my condition. I live in Australia, with one, stupid incompetent doctor at my disposal, which I get in to see every few months at the most. I’m poor, and I have never had a medical practitioner listen to me. So I want to say, please, on my behalf, continue to do what you’re doing. Please keep campaigning. So that one day people won’t have to suffer from this debilitating disease.

Sometimes being an Activist for the truth of better thyroid treatment is stressful. But emails like the above are what keep me going! So thank you to these two gals for communicating with me and agreeing to let others to see what I get to see. It’s all from their hearts.

Namaste Janie

* LAUGHING GRAPE PUBLISHING HAS A NEW FACE (in 2012) and a new book (in 2015). Check them out here: //www.laughinggrapepublishing.com

* Join the STTM Facebook page for tips and inspiration: https://www.facebook.com/StoptheThyroidMadness

 

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Finally! The 2011 REVISED SECOND EDITION of the Stop the Thyroid Madness book!

YEEHAW!!

Three years ago this month, the book Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment came out with quiet fanfare–a complete patient-to-patient book chock full of information based on the successful experience of thyroid patients worldwide.  As the messenger of that information, I had a strong purpose: to create INFORMED patients who can then demand change in their doctors offices. Pro-active patients!  Educated patients!

But the reaction to it wasn’t quiet!

Thyroid patients have reported it was changing their lives.  To date, the STTM book has been sent, and in multiple copies, to Antiqua/ Barbuda, Austria, Australia, Belgium, Canada, Cyprus, Denmark, Finland, France, Germany, Iceland, Ireland, Israel, Malaysia, New Zealand, Netherlands,  Norway, Singapore, South Africa, Spain, Sweden, Switzerland, Thailand, and the UK. That doesn’t include the high volume amount of copies sent to US patients, doctors, and individuals in all 50 states and Puerto Rico.

Amazingly, yet not surprisingly, patients were discovering new information even a few months after the First Edition was published three years ago.  As a result, Laughing Grape Publishing LLC had to add, and continually update, a bookmark of updated information into all its books ordered directly from the publishing company.

Today, in the REVISED SECOND EDITION, all that extra patient information has been added, plus a LOT more.

  • 36 more pages, by and for patients, plus changes & additions in every single chapter
  • Much more detail on adrenal and HPA dysfunction and how to treat it
  • Recognizing and dealing with Reverse T3
  • Identifying and treating gluten issues as related to Hashimotos disease
  • Iodine-use information in relation to hypothyroid, breast disease, Hashimotos, adrenal dysfunction, etc.
  • More details on labwork preparation, plus what to look for in your results
  • Why you need more than ferritin testing, and details on iron testing
  • Updated information on brands of desiccated thyroid throughout the world, T3-only products, hydrocortisone, and more
  • A completely NEW CHAPTER on supplements & foods which thyroid patients appreciate and use!

And, the price has been kept exactly the same.  Our loss; your gain, in the name of an important movement of needed education and change!

This was NOT an easy book to revise!  I had to go through it with a fine-toothed comb, removing some information, correcting other information, adding a lot more…besides working on making it more readable. I am not a writer by profession. Sometimes I felt like a “cuckoo’s nest mental case”  trying to balance the work on the Revised edition with my other activist responsibilities and a busy private life.  Is it perfect?  Nope.  But as I stated in the First, some information is right on target, some is at least close to the bulls-eye, and other info will fall into place as we continue to learn. That’s why you need to see it as “guide” of patient experience, and to use it to become PROACTIVE in your relationship with your doctor and the entire medical profession.

Today, you can order either copy. As of today, the First Edition has been lowered to 14.95 until supplies run out, which will be soon. The Revised Second Edition is taking pre-orders, and it looks like books will start being sent out in about 7-10 days.

You can go here to see a stand-alone website about the book, as well as here to be among the first to pre-order your copy.

THE STTM BOOK IN OTHER LANGUAGES

Yes, you will eventually be seeing the Revised Second Edition in various languages. That’s in the works right now, and no, I don’t yet know the dates. I’ll announce that here, so be sure and be signed up for this BLOG NOTIFICATION to the left under the links.

KINDLE and E-BOOKS

With no projected dates other than much later this year, you will first see an E-book. Later, we’ll be looking at Kindle. Again, announcements will be made, and you’ll have to be patient.  In the meantime, ordering the book is your best choice right now. Besides, having this book in your lap in the doctor’s office is powerful to many of them, since doctors can have silly thoughts about “internet” information.

And more is coming which will be announced as they occur. 🙂

30 replies

How does your insurance deal with desiccated thyroid?

(Though this post was first written in 2011, it has been  updated to the present day and time. Enjoy!)

Wendy is one of those gals that tries to adhere to “natural” in regards to her medication choices. She switched over to Natural Desiccated Thyroid (NDT) from Synthroid about three months ago.

The transition was slightly trying, says Wendy. Her doctor didn’t believe her that she shouldn’t be on a low starting dose for more than a couple weeks without upping it. So she  went hypothyroid all over again. It’s a common mistake that many doctors make with NDT.

But after successfully upping the dose every few weeks, she will now shout that it’s been the BEST thing  in every way!  She tells folks that being on Synthroid was like having your hand amputated and replaced with a hook, while being on desiccated thyroid was like having it replaced with a fully functional prosthetic.  Her skin is softer, hair is not shedding, her mood has changed in a good way, memory has returned, fogginess has faded. She feels closer to her old self than she has in almost five years.

Now the bad news…

All this time, she only paid $15 for her desiccated thyroid at the local Walgreen’s. But as of April 1st, 2011, it became what is called a Tier 3 drug under her insurance plan–United Healthcare.  Exclaims Wendy in outrage and sadness:  “This means that the natural drug I love, that has restored my in so many ways that the synthetic t4-only drugs never could, will now cost 85 bucks! Who can afford that?! ”

And here’s the awful irony when it comes to her insurance plan: Synthroid, the worst medication ever thrust upon us in the treatment of hypothyroid, is Tier 2 (i.e. costs less), and generic T4-only is Tier 1 (costs even less).  i.e. if you are under this insurance, you have to pay big bucks to feel a thousand times better.  She has no clue why this is happening, but warns that it might start to happen across the board for others as well!

In the United States, most Tiers look like this (and some companies have three tiers, while others have five):

Tier 1 is for generic medications and has the lowest co-pay

Tier 2 is for “preferred” brand name medications, i.e based on “safety, efficacy and cost”, and is the second lowest co-payment. (I put the word preferred in quotes because it’s not based on what changes YOUR life as a thyroid patient.)

Tier 3 is for non-preferred brand name medications or preferred specialty drugs. It’s termed as those drugs which are not typically used as first line of treatment, and have a higher co-pay.

Tier 4 is for specialty medications, i.e those which require special dosing or administration. Highest co-payment.

In the United Kingdom, where the National Health Service (NHS) provides publicly funded health care, there are formularies which specify which medications are available…or not, and one can get Prescription prepayment certificates (PPC) .

In Australia, “Medicare — via the Pharmaceutical Benefits Scheme (PBS) — subsidises the cost of around 1,700 ‘necessary and life-saving’ medicines. In fact, most medicines available on prescription are subsidised under the PBS, so just by having a prescription filled you receive the benefit of the subsidy. https://www.justlanded.com/english/Australia/Australia-Guide/Health/Medicines-Chemists

Does your health insurance cover your desiccated thyroid?

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

How medical journals affect the prescription practice of your doctor: An interesting article on this found here. And here’s an article about how the author of a medical article fails to state his association with the pharmaceutical of the product he is writing about–one more conflict of interest and influence on your doctor!

Ridiculous! Basing “normal” for Hashimoto’s patients by the TSH, a pituitary hormone, NOT a thyroid hormone: Read it here and weep.

Vit. D can help you stay sharp: So many benefits from optimizing your Vit D, and here’s one with your brain.

Need to talk to others? See all your alternatives here.

63 replies

Sue’s remarkable and shocking story about cellulose as a filler in our thyroid meds

(This page has been updated to current date and time. Enjoy!)

I received in an email from Sue in Australia.

Sue’s son has complex difficulties with a diagnosis of sarcoidosis, an inflammation disease that can occur throughout your body. From the disease, says Sue, he was fairly emaciated, which is common with Sarcoidosis (emaciated means he was basically “skin and bones”).

He was also born without a thyroid. So he’s been on compounded natural desiccated thyroid–the way thyroid is made in Australia–and of course, the filler has been cellulose.

When she read from STTM (see here) about the problems with cellulose and the way it binds the desiccated thyroid–making the compounded thyroid less effective–she approached a biomedical doctor to have the filler changed to acidophillus as suggested. He instead suggested glycine powder. Glycine is a non-essential amino acid and neurotransmitter which helps with digestion, central nervous system health, besides create muscle tissue and convert glucose into energy.

And, says Sue, “the immediate reaction was startling as my son who had been suffering from emaciation for years with a diagnosis of sarcoidosis put on over a kilo in much needed weight in the space of little more than a week.” In fact, she now wonders if much of his problems has been related to his lack of thyroid, and the cellulose filler making the medication less effective, all along!

Says Sue, “His case is a complex one, having been born without a thyroid gland, but the removal of cellulose ( or the addition of glycine or both) have certainly heralded some exciting changes”.

She also added, “There must be more to this than meets the eye. I did have to reduce his thyroid extract dose as I’m assuming that the binding effect of the cellulose meant he was on a higher dose than necessary to get a reasonable result and/or perhaps glycine enhances absorbtion. I’m sorry there are still quite a few questions to be answered and the results of a  blood test in a few weeks time will be interesting. I’ll keep you updated.”

Bottom line: adding cellulose as a filler with desiccated thyroid has been a disaster, as patients discovered after both Armour by Forest Labs and Naturethroid by RLC Labs were reformulated in 2009 and early 2010, respectively.

One thing anyone can try is chewing up their Natural Desiccated Thyroid which can release the thyroid from the binding cellulose. You can also choose to use a mortar and pestle to pulverize the tablets, and add a touch of honey or sugar, which helps with digestion. There are some NDT’s which do not have cellulose. 

If you are on compounded desiccated thyroid, ask the pharmacist to change the filler to acidophilus. Or ask about Glycine (or L-Glycine) to see if it is good for your particular situation.

All good alternatives for thyroid treatment are found here.

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** Have you Like the STTM FACEBOOK PAGE? It gives you daily information, tips, and inspiration. 🙂

** Thank you!! A hearty thank you goes to those who have contributed to the hosting fees for STTM–a patient-to-patient educational site! I can’t do it alone, so you are VERY appreciated. And if you would like to contribute to the hosting fees (which I do not get: the host server does), go here.  Stop the Thyroid Madness is YOUR site.

** Vitamin and mineral deficiencies:  It’s common for thyroid patients to be low in iron/ferritin, Vit. D, magnesium, potassium and more. Have you checked your levels lately?


17 replies