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Guest Post by Jacqueline about the availability, or not, of T3-only meds

The following is written by thyroid patient Jacqueline of the United States, and may be of interest to all of you who use T3 / T3-only, no matter where you live. Her mention of Cytomel is a major brand of T3, but there are other versions.

Let Jacqueline and others hear about your issues with finding T3.

Just spent the better part of two hours trying to locate some Cytomel after Walgreens and Safeway said they and all their distributors (which are used by all the other pharmacies) are out of the 25 mcg size tablets. I have tried to locate Cytomel at least two times in the last 6 months. Earlier, I had been able to locate some in the pipeline of pharmacies and distributors. But not anymore.

Keep in mind that I do not convert T4 to T3 very much ( I do take NP Thyroid for T4, T3, T2, T1). I have tried generic and compounded T3 meds and got nothing from them. So I switched back to Pfizer-branded Cytomel last year with now a  HUGE expense as the price is now so high that the formularies do not list it any more, meaning I only get 20% coverage.

Per day, I take two of the 25 mcg of Cytomel by Pfizer, plus 60 mcg (~1 grain) NP Thyroid.  I have taken Cytomel for 20 years. To try to save money after Pfizer hiked the price about six (?) years ago, I tried switching to the generics and to compounded T3. But they were very ineffective for me, and I have been dealing with health problems that the attempted switch caused for the last year and a half. I resigned myself to the high expense, but now Pfizer has disrupted the supply, and may now be making changes in how/where it is made. UGH

My experience in trying to reach Pfizer

1. When I tried to send an email to Pfizer via their website, the field keeps saying I have too many characters no matter how many are in the box, so that was a failure.
2. When I called Pfizer Customer Service 800-533-4535 five times today this happened: there is only voice option to respond to questions on the menu, so I said “Product Information”, then “Cytomel”. They cut me off every time. No idea if the call system is broken or the product name triggers the line to be cut.
3. When I called 800-438-1985, I took the section for “Professionals” because that was the only thing that made sense. A service rep took down all my personal information, then found me a customer rep.

What Pfizer’s customer rep stated to me i.e. these “company-lines”:

a. 50 mcg is not being made until March 2019, and is unavailable. (I could use this size of the pills by cutting them in half, would save me the most money, actually.)

b. 25 mcg is not being made until March 2019, and can be ordered by pharmacy drop ship to individual patients. Actually, the manager Safeway’s pharmacy refused to do this for me. My Walgreens pharmacy did it, by going though their distributor, which the customers service rep did not understand would be necessary. Pfizer gives only two bottles per call to the pharmacist, and I got one, another client got the other. I have no idea how long this will take – last time Walgreens ordered a drop ship of Cytomel, it took 3 weeks, acc’g to the gal at Walgreens. This will not last me until end of March, so I have to consider other options, as well. Meanwhile, the old Cytomel pills expire in February!! I have no problem taking them for a while post expiration, but this is all a mess.

c. 5 mcg are back on the shelves. I would have to take 10 pills a day plus maybe 1 or 2 more to compensate for the extra filler in so many pills- thus could cost me, after the piddling 20% insurance coverage, $800 or more per month. This is the most expensive option, but I may need a back-up.

Why the disruption in supply?

Pfizer Customer Rep said that there is some “change in ingredient(s) supplier.” The exact details are considered private “corporate information” LOL. Actually this is CRUCIAL info for docs and their patients. I will consider moving to a different company’s product since there are going to be changes and the timing is not certain or shared with patients.

i. If even one ingredient is being made in a new facility, the formula is different, and may not perform the same. For those of us who depend on something in its exact form, WE NEED TO KNOW THIS.

ii. Since we depend on this product for our health, we need to know the TIMING of this, and whether they DEFINITELY will resume producing this medication.

iii. Reasons for disruption are factors we and docs should know for deciding whether to change to a different version.

My theories about why this happened

1. Price hikes led to removal from formularies (official list giving details of prescribed medicines) led to limited insurance coverage, rather than co-pays, which then reduced demand (I tried to switch away for this very reason, but nothing worked, so I came back despite the insane expense). For example, the first approx. 14 years of taking Cytomel, it was covered by my co-pay. Then the list price went way up A LOT (why? KEY INFORMATION NEEDED BY US as patients who NEED T3). From that point on my insurance only gave me back 20%, so I was paying almost $500/month. When I gave upon on alternatives and went back to Cytomel, I was on T3-only to reduce RT3, so I was actually able to take fewer pills (2 x 25mcg vs. 4x 5mcg in the past), which reduced the cost a bit as it seems to be more based on # pills than #mcg. It is likely that many switched to generics or compounded versions to save money when the price was hiked. The reduced demand would make it less profitable, and harder on the production facility.

2. Cost of raw materials went up? Raw materials in short supply??? How they are looking for alternatives?? If this is the case, the company should be telling us this!!

3. Raw materials supposedly made in Puerto Rico facilities taken out by Hurricane Maria and now unavailable??? If so, Pfizer should be telling us this.

4. 5 mcg are likely the most popular as they are most common usage is to supplement a T4-only synthetic or a Natural Desiccated Thyroid (NDT)) with a little bit of T3. For example. I used to take 150 mg Tirosint (gel-based T4, also very expensive now, so I switched) plus 20 mcg Cytomel. However, when my RT3 went way up (after I was on generic and compounded T3!), I had to take A LARGE amount of Cytomel for T3-only therapy: my theory is that the numbers of people taking such high doses of T3 and/or doing (temporary) T3-only therapy are not that high or constant, so there is is not much demand for the 25 mcg or 50 mcg pills of Cytomel.

Sorry about this long saga, but I hope to help others.

If anyone has any further info about any of this,. or any suggestions, or any relevant experiences, I am very interested.
Please post!!!  ~Jacqueline

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From Janie: as we wait for more information as well as your comments on this important Guest Blog post, here are links to help you in your quest to feel better..

1) Want to order your OWN labwork because you like being self-directed? Go to this page and scroll down to see the icons for different lab facilities.

2) Have a high RT3? Check out this page.

3) Learn what patients have learned in the use of T3-only.

4) See the different brands of T3 in pink on the Armour vs Other Brands page.

5) Have what looks like a optimal free T3 (top part of range or even higher) but you still feel awful? You may be pooling due to a cortisol issue that needs discovery with a saliva test. Once you get your saliva results back, DO NOT go by their graph. Go by this page.

6) Here’s info on the different thyroid medications: https://stopthethyroidmadness.com/hypothyroid-medications/

NOTE: if you are reading is via the email notification you signed up for, DO NOT REPLY TO THE EMAIL. It will not be received. If you want to comment, CLICK ON THE TITLE of this blog post, then scroll down to comments. 

58 replies

All about Drug Recalls and what happened to Westminster’s Natural Desiccated Thyroid

Probably most people have heard about “drug recalls”, but may not know the ins and outs about recalls.

What is a recall?

I personally think the best definition of a drug recall comes from the Saunders Comprehensive Veterinary Dictionary1:  a voluntary action of removing a product from retail or distribution by a manufacturer or distributor to protect the public from products that may cause health problems.”

Note the word “may” cause. Recalls can also be about risk, not just about definite adverse consequences.

So a recall is voluntary by a pharmaceutical?

It definitely can be. And it can also be at the request of the FDA.  Either.  From the FDA2: Drug recalls may be conducted on a company’s own initiative or by FDA request. FDA’s role in a recall is to oversee a company’s strategy, assess the adequacy of the recall and classify the recall.

What are reasons for a recall?

WebMD3 defines five potential reasons:

1) it’s a hazard to your health
2) it’s mislabeled or poorly packaged
3) it’s potentially contaminated during production or distribution
4) it’s not what it says it is
5) It’s poorly made, effecting it’s quality, purity, and/or potency

For #3 above, note that the potential contamination may be harmful OR non-harmful.

Are recalls common?

Believe it or not, yes! A 2017 article in the Journal of the American Medical Association4 stated that 1/3 of all prescription meds have been recalled due to “safety events”.

If something I take has a recall, what do I do? Can I get my money back?

Yes. But you do need to call the pharmacy from which you got it, first. They have to get official notification of the recall before giving that refund.

Shouldn’t I get a replacement for my prescription medication before taking it back?

Call your doctor so he or she can prescribe a different one before you return your recalled medication. That way, you can pick it up at the same time you return your recalled medication, say experts.

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Now let’s move to a recent recall of one particular natural desiccated thyroid medication by Westminster Pharmaceuticals.

Westminster came out with its own natural desiccated thyroid (NDT) product, considered a generic version, in late 2017.  You can read more about their NDT product on Stop the Thyroid Madness’s page which lists brands and ingredients, here.

Westminster voluntarily issued a recall of their NDT in August 2018 due to “risk of adulteration”. See below.

Why did Westminster voluntarily issue a recall?

The recall states it was done “as a precaution because they were manufactured using active pharmaceutical ingredients that were sourced prior to the FDA’s Import Alert of Sichuan Friendly Pharmaceutical Co., Ltd., which as a result of a 2017 inspection were found to have deficiencies with Current Good Manufacturing Practices (cGMP). Substandard cGMP practices could represent the possibility of risk being introduced into the manufacturing process.”

It’s important to point out the words “possibility of risk”. That is different than a definite negative outcome as having occurred. But time will tell.

And if you really want to get into detail about why the FDA issued an alert about Sishuan Friendly Pharmaceutical, the maker of desiccated thyroid powder that Westminster was using, it’s all here.

How do I know if my particular bottle of Westminster’s NDT is part of this recall?

The recall notice lists many lots. You’ll need to call your pharmacist to see which lot your bottle came from. But it does appear that most of Westminster’s NDT has been recalled by the long list of lot numbers.

Has anyone been harmed by their use of Westminster’s NDT?

In the 2009 recall wording, it was stated “To date, Westminster Pharmaceuticals has not received any reports of adverse events related to this product.”

Is this the first time that any thyroid medication has been recalled?

Nope. For example, Levoxyl, a T4-only medication, was recalled in April 2013.  Synthroid, another T4-only medication, has been recalled numerous times due to issues like subpotency and the same failure to follow good manufacturing practices.

Is 2018 a year of Natural Desiccated Thyroid mishaps??

Boy oh boy, it sure has been.

First, RLC’s Naturethroid and WP Thyroid ceased production in 2017, and Naturethroid only started creeping back in 2018. But sadly in 2018, there seem to be quite a few patients reporting it to be far weaker than it used to be and finding that out the hard way with the return of major hypothyroid symptoms. Some are trying to raise it to see if they can regain their former feel-goods; others have been switching to other brands.

Then comes this with Westminster’s NDT. What a mess.

Is there a conspiracy at foot to take our NDT away?

No, it does not appear to be conspiracy.

My doctor claims these recent issues prove that desiccated thyroid is unreliable and I should use Synthroid. What do I say?

You say “What is proven by millions over the years is that T4-only like Synthroid is the unreliable way to treat hypothyroidism”.

So where do I turn now?

People have been moving over to NP Thyroid by Acella, or Armour. You can also choose to have your NDT compounded. Or move to synthetic T3 with synthetic T4. But the goals are the same, which for years includes seeking a free T3 towards the top part of the range, and a free T4 midrange. Both. And to achieve the latter, it’s still important to have the right amount of cortisol and iron, we’ve learned repeatedly, because if you don’t, you can see problems. Too often, people blame their problems on NDT, when in reality, it’s what NDT or T3 reveals that is the problem.

 

 

 

 

 

 

 

 

Footnotes:

1. Saunders Comprehensive Veterinary Dictionary, 3 ed. © 2007 Elsevier, Inc.

2. https://www.fda.gov/Drugs/DrugSafety/DrugRecalls/ucm612550.htm

3. https://www.webmd.com/a-to-z-guides/what-is-a-drug-recall#1

4. http://jamanetwork.com/journals/jama/fullarticle/2625319

99 replies

Feel better on T4 than you did on Natural Desiccated Thyroid?

Occasionally, hypothyroid patients will exclaim with conviction and truth that they outright feel better on Synthroid or Levothyroxine (T4-only meds) than they did when they tried Natural Desiccated Thyroid (NDT) or even T3-only.  And we believe them.

But…there is an explainable reason which does not mean T4-only is better for you. It really isn’t. Bear with me and read on…

Years ago, as many of us were starting on NDT after being on T4, we were seeing our lives change in a huge way, far more than T4 did! It was like a miracle! Those five hormones really made a difference.

But some others were having problems when raising something so miraculous for others. Huh?? We didn’t get that.

It took awhile longer to finally see why and to answer the “huh?” i.e. we began to see that there were three strong and correctible reasons why someone was not seeing the miracle of NDT as others were, and instead, were blaming the NDT (or T3) and moving back to T4-only…

The three main and correctible reasons why NDT, which gives all five thyroid hormones, seems to fail…

1) NOT BEING “OPTIMAL” WITH YOUR NDT DOSE (it’s NOT about just being in range and not about being held hostage to the TSH)

We all have had a tendency to believe that our doctors know what they are doing with NDT or T3. But, the majority do not. They tend to leave you on too-low doses, and/or pay attention to the lousy TSH. Thus, due to the natural suppression of the feedback loop (hypothalamus to pituitary to thyroid), you will get worse on those lower doses, sooner or later. i.e. you will get more hypo, and/or have rising adrenaline, cortisol, anxiety or other. And because of that, some exclaim “NDT didn’t work for me!” and they rush back to T4-only.  But NDT, with all five thyroid hormones, could have worked well IF you had known to be more optimal. Optimal puts the free T3 towards the top of the range and the free T4 mid-range, and puts the TSH below range…all three…and removes all symptoms. What amount does that is very individual—some start to achieve that in mid-2 grains, others are in the 3-5 grain area, others may be higher.

What if you tried to raise to be optimal, but had worsening problems? Read #2 and #3 below.

2) NOT BEING OPTIMAL WITH YOUR IRON LEVELS (it’s not about just being in range)

When this is brought up to patients who once tried NDT and failed, they will exclaim with all sincerity “But my iron levels were great”. We know that a very small percentage may have had good iron. But what is common with the majority is they did NOT have good levels “Falling in the normal range” does not equal a good level of iron. It’s WHERE one falls that tells the story.

For example, with two types of ranges for serum iron (NOT ferritin):

a) When the range is approx. 40?155: women who have optimal serum iron tend to be close to 110, or 109, or 108, etc. They are NOT in the 90’s and definitely not lower when optimal. Men tend to be in the upper 130’s.
b)  When the range is approx. 7-27: women are optimal around 23ish; men are towards the top.

If they are lower than the latter examples, it messes up the ability to raise NDT and feel great without issue. Why? Inadequate iron levels tend to raise the reverse T3 (RT3) as one is raising their NDT.  As the RT3 goes up due to inadequate iron, you will feel worse. And because of that, some exclaim “NDT didn’t work for me!” and they rush back to T4-only…but if they had had optimal iron, NDT WOULD have worked…as long as they also had optimal cortisol (See #3 below) and were working to find their optimal dose of NDT (see #1)

See more details about iron here: http://stopthethyroidmadness.com/ferritin

3) NOT BEING OPTIMAL WITH YOUR CORTISOL LEVELS (it’s not about just being in range, and it’s NOT about blood cortisol)

We noted years ago that at least 50% of those with hypothyroidism had a cortisol issue as revealed by saliva, not blood. What does a cortisol issue mean? Either their cortisol was too high (due to the stress of being undiagnosed, poorly treated, or being on T4) or was too low (due to the stress of being undiagnosed, poorly treated, or being on T4), or had both high and low (due to the stress of being undiagnosed, poorly treated, or being on T4).

And what happens with a cortisol issue when you are trying to work with NDT? Either RT3 will go too high (the inactive hormone), or one’s T3 will pool in the blood and not make it to the cells, or both…and you won’t feel well or have bad reactions like excess adrenaline, anxiety, shakiness, feel-bads.

And because of having a cortisol issue, some exclaim “NDT didn’t work for me!” and they rush back to T4-only…but if they had…

a) done the 4-point saliva test, not blood
b) compared the saliva results it to the lab-values page (it’s not about that normal range)
c) CORRECTLY treated it (see this page, plus Chapter 6 in the updated revision STTM book if saliva is VERY low, which also applies to Adrenal Cortex),

….they would have soared on NDT…along with good iron and being OPTIMAL on NDT (or T3)

Note: it’s always about the results of a saliva test, NOT blood cortisol.

Bottom line, it’s not as simple as “feeling better on T4”. It’s more about that you are NOT experiencing the side effects that you did on NDT from any of the above three problems, which were all correctible. That is different.

“That all sounds like too much trouble–I’m staying on T4-only!”, you may be exclaiming….

There is a big problem with that reasoning that I hope you will be open to….Namely, T4-only outright…

  • CAUSES low iron
  • CAUSES a cortisol problem
  • CAUSES many other issues like lowered B12, lowered Vitamin D, rising blood pressure, rising cholesterol, depression, anxiety, heart issues, bone thinning, chronic pain….and more. The individuality is in who gets which…but T4 users do get problems of their own kind, sooner or later.

Please note that the above is not an empty strong opinion. It’s based on years of reported patient experiences from many who were on T4! i.e. most of the following hypothyroid symptoms were experienced by T4 users!! They were still hypo!

Now you may state “But I know people on T4 who do not have those problems!”.

First, some outright DO have some of those problems, but don’t realize it or they deny it (while others see it in them). Adrenal issues, even those denied, can make certain people awash with defensiveness, argumentativeness, denial, anger, paranoia towards others observations, low patience, moodiness, etc.

Yes, some on T4 do, in fact, do better than others. But you know what we have observed? The longer they stay on T4-only, the more problems WILL, in fact, raise their ugly heads eventually…like either adrenal issues, or low iron, or low B12, or depression, or rising cholesterol, or rising blood pressure, or heart problems, or dry skin and hair, or chronic pain, or bone loss, or rising illnesses…..on and on. Forcing the body to live for conversion alone backfires….sooner or later.

Summary: A working Natural Desiccated Thyroid, or adding T3 to that T4 as a second choice and getting those frees optimal, is a much better way to go than being on nothing but T4, according to years of worldwide patient experiences

A working NDT gives you all five thyroid hormones, and does NOT force you to live for conversion of T4 to T3 alone, i.e. some of NDT is direct T3. Additionally with T4-only, some people have genetic mutations which hinder the conversion of T4 to T3 and may not realize it.

There is a good reason that millions of patients found out that T4-only is not the way to go for many reasons, and NDT is the way to go if you correct the reasons you did NOT to do well...or even adding T3 to your T4 in an OPTIMAL amount. But you will still need optimal iron and cortisol!

P.S. The above three reasons are the most common for not doing well on NDT (or T3) and should be considered first. A 4th less common reason: chronic inflammation of any cause. Read about inflammation. If this is true for you, the sad part is that T4-only will also backfire, as it raises RT3.

Mold exposure can also effect conversion.

Click on the graphic to order an excellent saliva cortisol test.

101 replies

UH OH–Naturethroid and WP Thyroid Shortages and what to do

NOTE: this post starts with what was going on in September 2017, and there are updates to it at the bottom of the article. If you didn’t know about this, you need to sign up for blog post notifications at the bottom right of the STTM website.

UPDATE: since the new Naturethroid has come out in 2018, there have been an awful lot of patients reports in seeing their hypothyroidism return, with labs to prove it. It has not been pretty.

Feeling panicked or frustrated by the shortages of two particular brands of Natural Desiccated Thyroid? Let’s take a look at all of this and what you can do.

Brands of NDT

Nature-Throid® and WP Thyroid® are two brands of NDT produced by the U.S. pharmaceutical RLC Labs. (There’s even an older third brand occasionally still foundable: Westhroid, which is said to be exactly the same as Naturethroid, though in less strengths than Naturethroid provides.)

As mentioned in the most sought-after patient-to-patient hypothyroid book on the market, RLC (formerly Western Research) has been around a long time–since the early 1930’s. And it appears they aren’t about to end that long tradition of their existence.

Why the shortage

RLC explains that the shortages are due to “significant upgrades to our facility and equipment”. And though that has created great inconveniences to and frustrations by users of their products, it’s clearly stated by RLC to be a temporary issue, though the resolution may take awhile.

Steps to consider in the meantime

  1. Writing the prescription differently First, make sure you doctor writes your prescription in a way that you are able to get any other brand of NDT your favorite pharmacy provides. One way is for him to write simply “desiccated thyroid”, then the amount you use, instead of mentioning a brand.
  2. Call around to different pharmacies. Patients are reporting that some still have their supplies of Naturethroid or WP, and especially WP. See if that makes you lucky.
  3. Consider other NDT brands. For example, NP Thyroid by Acella has been proven by patients to be a solid and well-made Natural Desiccated Thyroid, similar to the old version of Armour. And there are no shortages of NP.
  4. Compounding pharmacies Though more expensive, these versions of pharmacies are a way to have your NDT made according to you or your doctor’s specifications, especially fillers used.
  5. Using synthetic T3 with synthetic T4 If the two synthetics are used, patients have learned that their goals end up being the same as Natural Desiccated Thyroid as far as lab results with the free T3 and free T4, plus removal of symptoms, as well as not going by the TSH lab test. To see different brands of synthetic T3 like Cytomel and others, go here and see them in pink.

Why a pharmaceutical might be doing an upgrade

The U.S. Food and Drug Administration (FDA) states they inspect pharmaceutical manufacturing facilities worldwide, based on standards outlined by the Current Good Manufacturing Practice (CGMPs) regulations. This is especially true for those facilities which manufacture active ingredients like “thyroid tissue”, as well as the finished pill or liquid product from the contained ingredients. They state “inspections follow a standard approach and are conducted by highly trained FDA staff.” 1

Says the FDA:

CGMPs provide for systems that assure proper design, monitoring, and control of manufacturing processes and facilities. Adherence to the CGMP regulations assures the identity, strength, quality, and purity of drug products by requiring that manufacturers of medications adequately control manufacturing operations. This includes establishing strong quality management systems, obtaining appropriate quality raw materials, establishing robust operating procedures, detecting and investigating product quality deviations, and maintaining reliable testing laboratories. This formal system of controls at a pharmaceutical company, if adequately put into practice, helps to prevent instances of contamination, mix-ups, deviations, failures, and errors. This assures that drug products meet their quality standards.2

If you really want to get detailed information on CGMPs, here you go: https://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/ucm064971.htm

Stop the Thyroid Madness has not seen anything stated from RLC that this is the reason for the upgrades causing the shortages. But it will be interesting to see what the Naturethroid and WP Thyroid tablets look like, and act like, after this upgrade and catchup.

UPDATE as of OCTOBER 10th, 2017:

Heard the following from a gal who called RLC Labs: They have been working on the one grain tablets, and stated they should be finished in about two weeks. Then they will be mass shipping to pharmacies after that time around the first of November.

UPDATE as of November 2nd, 2017

From RLC Labs:

We are happy to announce that Nature-Throid 1 grain (65 mg) is shipping! Shipping for this strength began a few weeks ago and it should be hitting pharmacy shelves soon, but that can be variable; some locations may even already have it stocked and available. If your usual pharmacy is unable to fill your prescription, we recommend contacting other local pharmacies to see what they have in stock. You can also try any of the mail-order pharmacies listed on our website for a potentially faster turnaround. Strengths are being prioritized based on highest demand, starting with Nature-Throid 1 grain, and we are releasing in all counts. The next strength to be released will be Nature-Throid ½ grain (32.5 mg), and we will post here when it starts shipping. We are unable to provide any updates around WP Thyroid at this time, but will share them and any other new details on this page as soon as they are available. Every effort is being made to have all strengths stocked and available as quickly as possible while still maintaining our strict quality standards—the industry allows for a monograph discrepancy of +/-10% between T4 and T3, but WP Thyroid and Nature-Throid are not released outside of +/-2%. Patients are and always have been the top priority at RLC Labs, and we are literally working day and night to get back to our usual pace as quickly as possible. Your understanding and continued support are greatly appreciated as we do our best to get back to our usual pace. *Please discuss all health-related questions or concerns, including those about symptoms, with your physician.

UPDATE as of January 15, 2018

https://getrealthyroid.com/product-availability.html

In the meantime, NP Thyroid by Acella is a good one to switch to. You may have to adjust it for your own needs.

MORE INFORMATION:

  • Can Hashimoto’s patients do well on Natural Desiccated Thyroid? Find out here.
  • Is it true that thyroid cancer patients should avoid NDT? See this.
  • How do I use Natural Desiccated Thyroid? See what patients have learned here.
  • What if I want to use synthetic T3 instead? See this.
  • Where do I get the Stop the Thyroid Madness books I hear so much about? Right here.

 

 

1. https://www.fda.gov/drugs/developmentapprovalprocess/manufacturing/ucm169105.htm
2. https://www.fda.gov/drugs/developmentapprovalprocess/manufacturing/ucm169105.htm
663 replies

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 

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