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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

Can things get any crazier for UK Thyroid Patients? Apparently so. Horribly so.

Doctors will have more lives to answer for in the next world than even we generals.       
~Napoleon Bonaparte

Is it possible that what was already awful….can be MORE awful?? Apparently so in the UK (United Kingdom).

If you are a thyroid patient in the United Kingdom (UK), the absurdity is increasing, becry patients!

Absurdity Part One: Yes, like everywhere else, UK hypothyroid patients have been put on T4-only, aka Levothyroxine for decades with the idiotic expectation that it would convert to the amount of T3 one needs. It hasn’t for all too many.

But the absurdity deepened.

Absurdity Part Two: Next came the idiotic idea that a TSH lab test (a pituitary hormone, not a thyroid hormone) had to get over 10 before one would receive any treatment. Over 10?  Really?? How many of us have had a TSH in the 2’s with raging hypothyroid symptoms! The answer: a lot. It’s NOT about pituitary hormone that LAGS behind what is going on.

Insanity Part Three: 2017 saw the worse become total insanity: the National Health Service (NHS) stating that T3 (the active thyroid hormone) has “little or no clinical value”  thus removing the availability of liothyronine (T3-only) medication as an alternative or adjunct thyroid replacement therapy. And with that removal of T3 medication from the NHS, patients have watched doctors go absolutely loco, loopy and wacky.

A nightmarish example by UK hypothyroid patient Elaine, told to lower her T3

Here are her own words of what is happening to her:

I was on 55 mcg T3-only via the NHS for over 4 years (with some improvement, even if not optimal). But earlier this year, the new Endo who I saw for my osteoporosis diagnosis insisted that the osteo was in part caused by my suppressed TSH on the 55 mcg T3 (False. See below), and started me on (with my agreement) a mix of T4/T3 to be slowly introduced.

First I was on 25 mcg T4 (in July) and less T3 at 35 mcg.
Then was moved up to 50 mcg T4 and down to 25 mcg T3 after 2 months
Then I was moved up to 75 mcg T4 and down to 20 mcg T3.

Immediately with the last change, my immune system began to deteriorate and I got frequent colds, even though it was summer. This sickness issue has continued. My immune system was already precarious, but it worsened and I had immunoglobulin tests which confirmed this. I have low IgA and low IgG, but not low enough that they would refer me.

I then had 4 migraines in a week, rather than once a month as I had been doing.

So I have stopped the regime and backed the T4 down to 50 mcg and the T3 up to 25 mcg. The trouble is that it doesn’t feel like enough. My energy is flat and my joints are beginning to hurt. I have written to the Endo but I suspect that they will not agree with my reasons, and that I will be pressured to conform ‘for the sake of my bones’. But I cannot allow myself to become more ill just to suit their agenda. I was even told by the thyroid nurse that I would not feel as well on this regime!!!

I think ultimately I may be forced to treat myself to have any quality of life. I have begun to stockpile T3 which I have bought privately to prepare myself for this scenario. Not good, either way at any rate.

Why did Elaine get osteoporosis? Does a suppressed TSH equal bone loss??

Elaine’s osteoporosis may have had nothing to do with a suppressed TSH–the latter which is quite normal, with no issue, when one is on NDT (Natural Desiccated Thyroid) or T3. It is NOT the same as a suppressed TSH with Graves disease!!

In fact, when optimal on NDT or T3, which suppresses the TSH, patients have REPEATEDLY reported strengthen bones as revealed by testing, and/or a reversal of osteopenia.

Instead, Elaine was still hypothyroid.

The evidence? She had adrenal issues/low cortisol as proven by saliva testing. Finding oneself with low cortisol is COMMON for those who have been forced to live for conversion alone with Levo or Synthroid. And the side effect? Thyroid hormones like T3 don’t get to the cells well, and instead, start pooling high in the blood. She did find herself with a high free T3 long after she had taken her thyroid meds–too long after.

Bottom line, contrary to the suppressed TSH with Graves disease, it’s NOT a “suppressed TSH” from being on T3 which is causing bone problems. It’s about still being hypothyroid!

1) T3 regulates bone turnover and mineralization in adults. http://www.endocrine-abstracts.org/ea/0004/ea0004s5.htm

2) The skeleton is considered as a T3-target tissue  https://www.karger.com/Article/PDF/345548

3) Thus, all the factors required for locally regulated T3 action, including thyroid hormone transporters, metabolizing enzymes and receptors, are present in cartilage and bone indicating the skeleton is a physiological target tissue for thyroid hormone throughout life  https://www.karger.com/Article/PDF/345548

4) ….during bone formation, T3 stimulates osteoblast proliferation, differentiation and apoptosis, and increases the expression of osteocalcin, type 1 collagen, alkaline phosphatase, metalloproteins, IGF-1 and its receptor (IGF-1R). Subsequently, during bone resorption, T3 increases the expression of important differentiation factors of the osteoclast lineage such as interleukin 6 and prostaglandin E2 (5). Moreover, T3 acts in a synergistic manner with osteoclastogenic hormones such as parathyroid hormone (PTH) (9) and VD (10). It has also been demonstrated that T3 increases the expression of mRNA of the ligand of receptor activator of nuclear factor-κβ (RANKL) in the osteoblast, which activates RANK present in osteoclast precursors a key step in the osteoclastogenesis (7).  http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-27302014000500452

5) Without sufficient T3, then, normal bone remodeling is disrupted, and bone resorption happens at a more rapid rate than bone building. The result: decreased bone density and osteoporosis.  https://saveourbones.com/can-a-slow-thyroid-cause-low-bone-density/

And the above five examples only touch the surface of the information out there about T3 and your bones. Read this: https://stopthethyroidmadness.com/bones/

Bottom line, UK thyroid patients have it rough when their National Health Service has withdrawn the availability of T3 to patients who outright need this powerful thyroid hormone…and when doctors are clueless and push patients to lower the T3 they are already on…and to levels which do NOT work. 

 

 

 

 

 

 

 

 

* See the April 2017 Guest Blog Post about the NHS stating that T3 has little or no clinical value: https://stopthethyroidmadness.com/2017/04/02/stupidity-award-nhs/

* Here’s why Levothyroxine has not worked as reported by millions of patients, whether from the beginning or the longer they stay on: http://stopthethyroidmadness.com/t4-only-meds-dont-work

* Here’s a UK-based facebook group attempting to fight for better treatment in the UK: https://www.facebook.com/groups/ITTCampaign/

* Are you a Hashimoto’s patient? Here are ten questions you need to ask yourself: https://stopthethyroidmadness.com/10-gut-health-questions/

 

22 replies

The Problem that Aging Hypothyroid Patients Face and How to Deal With it

Perhaps because millions of baby boomers are hitting their “senior citizen” ages, we are seeing an increase in statements by doctors, websites, and pharmaceutical reps implying that seniors should not have T3 in their treatment like NDT (Natural Desiccated Thyroid) or synthetic T3, calling it “dangerous”.

So I hope you are as impressed with the words below of this wonderful 72-year-old lady named Pat as I was…because her experience refutes the growing and ridiculous fallacy that T3 is globally and inherently “dangerous”.

I am 72 years old and up until four years ago, I was on Synthroid for over 30 years. Back then, I noticed my hypothyroid symptoms about six years after my second child. But if I’m honest and look back on my life, I now know that even as a teenager, I had brain fog….actually pretty serious brain fog. But I learned how to cover it up…

During all this time, I was diagnosed with multiple problems (which are typical for too many people on the poor treatment with T4-only or those undiagnosed): fibromyalgia, high cholesterol, high blood pressure, arthritis in my fingers, fatty liver syndrome and more. 

I also had the inflammatory disease called sarcoidosis in one nerve and in my lungs. I can’t actually connect sarcoidosis to my hypothyroidism and poor treatment with Synthroid, even if hypo people can report seeing increased inflammation. But it did happen when I was taking Synthroid. I had to take prednisone to beat it back and have been in remission for 15 years now.

But the bottom line is that for all those other issues mentioned above, I used to take multiple medications to treat all of them.

And guess what? Changing to Natural Desiccated Thyroid (NDT) four years ago took away all the above issues I was having, meaning I was also able to get off most of my prescription meds. I have less fatigue. I now have the flexibility of a 40 year old. The arthritis I had in my fingers just went away. I don’t need cholesterol or blood pressure meds anymore.

I sometimes add in compounded T3 if my RT3 (reverse T3) inches up.

My latest doctor now takes Natural Desiccated Thyroid after she saw how well I was doing. She has hypothyroidism and Hashimoto’s. We share a lot of ideas on how to conquer this disease.

My husband often goes to my appointments and says he does not understand a thing we discuss. I gave my doctor my copy of the “Stop The Thyroid Madness” book.  Interestingly enough, i knew when I went to my doctor that she used to recommend Synthroid, but also recommended herbs and other things to help with this disease. She was open to change, I think, because of her own experience.

So I think I blew their office up on my first appointment. I came in with all my labs and history. It was a 3-hour appointment with 2 people plugging in my info – my doctor and her assistant. It was later that I realized, when she asked me how I took my NDT, that she had switched to an NDT herself!

On our last appointment when we were talking about my slowly rising antibodies she told me that hers were in the thousands (my mouth dropped) and that she was taking 6 grains of her NDT. I’m thinking of recommending that she take LDN (low dose naltrexone) as I have heard it can reduce the antibodies.

Bottom line, it wasn’t staying on Synthroid that changed my life. It was moving over to Natural Desiccated Thyroid that has direct T3 in it. And in my opinion, my experience tells me the drug companies are lying! They want to keep people unhealthy so they will buy their drugs and then buy more drugs to take care of the damage the first drugs caused.   ~Pat

Here are some of the crazy issues seniors face (and there are more):

1) Medicare in the United States dropped all NDT’s from their Part D formulary—i.e. they won’t be paid for if you rely on Medicare. Armour on page 2, Naturethroid on page 16, NP Thyroid on page 17, Westhroid and WP Thyroid on page 29. See here.  Luckily, most prescription NDT brands are not that expensive anyway. Armour did go up, while the others stayed less expensive like NP Thyroid. Some use the prescription comparison called GOOD RX to find the best price in your city. 

2) Medicare in the US states “….the serum TSH test is reliable, valid, and acceptable to patients.”   To the contrary, patients of all ages have found it to be the most ridiculous test to either diagnose or treat by. It should always be about clear symptoms along with the free T3 and free T4, plus about where the latter fall in those so-called normal ranges. This is why you HAVE to be informed and be prepared to stand up for what is right and wrong. Read http://stopthethyroidmadness.com/tsh-why-its-useless There is also a complete chapter against the lousy TSH lab test in the STTM II book, and written by an MD! THAT is a chapter your doctor should read. 

Even worse, the ATA (American Thyroid Association) has stated that the target serum TSH should be 4-6 mIU/L in hypothyroid individuals age 70 or older.  That is in spite of the fact that so many of us at ANY age can have raging hypothyroid symptoms even with a TSH in the 2’s.

3) Or take the British Thyroid Association (BTA), which has stated that British thyroid patients shouldn’t be put on any thyroid meds whatsoever until their TSH is over 10, and that seniors should have a TSH around 4-10…in spite of the FACT that no matter what age, we can have raging hypothyroid symptoms even with a TSH in the 2’s–symptoms which UK doctors may blame on something else!!  Equally as bad, the UK National Health Service only endorses levothyroxine, and refuses to provide T3 to patients anymore.

4) The American Thyroid Association (ATA) states “As with the younger patient, pure synthetic thyroxine (L-T4), taken once daily by mouth, fully replaces the function of the thyroid gland and successfully treats the symptoms of hypothyroidism in most patients”  YET, we know that’s a joke. Time to inform whomever you can that a healthy thyroid does NOT make the human body solely depend on conversion of T4, a storage hormone, to T3. A healthy thyroid gives some direct T3 to counter any issues with conversion.  Read http://stopthethyroidmadness.com/natural-thyroid-101

But you CAN bypass this craziness, say informed seniors, with these steps

  1. Finding the right doctor: As with any age, senior patients state they all-the-more need to DO THE WORK to find a smart doctor who WILL let you be on T3 or NDT, and will NOT go by the lousy TSH lab test. It can be work, but it’s possible to find one. http://stopthethyroidmadness.com/how-to-find-a-good-doc
  2. Understanding the iron and cortisol issue: Seniors who have either been undiagnosed or on T4 for years say it’s extremely important to check iron and cortisol levels, since they can be off from all the years of no treatment or a poor treatment with T4. If they are off, they can cause reactions to T3 or NDT, causing the misinformed doctor to proclaim “See, I told you so”, when in reality, reactions to NDT or T3 are revealing inadequate iron or a cortisol issue. They will need to be treated. See http://stopthethyroidmadness.com/iron-and-cortisol
  3. Commiserating with other seniors: If you are OVER 60…consider joining the Facebook FTPO 60-and-over discussion group and see where others have found a good doctor. (FTPO stands for For Thyroid Patients Only) https://www.facebook.com/groups/FTPO60andover/ NOTE: you canNOT be approved if the admins can’t discern that your age fits this group, or we can’t see either your wall posts or friends list–the latter to know you aren’t a spammer.
  4. If you have to go in the hospital…have an informed family member or friend) who will advocate for you about your current NDT or T3 treatment. Too many patients have reported they were taken OFF their needed T3 or NDT and put on T4-only…and they regret not bringing their own meds or having an advocate.
  5. Keep a document stating what thyroid meds you are on, and why, that your advocate can have access to.

To read more: https://stopthethyroidmadness.com/thyroid-patients-getting-older

To get the very important STTM Books: http://laughinggrapepublishing.com …. because YOU have be informed!! If we put all our apples in a doctor’s cart, the risk is high we’ll stay sick or poorly treated. We have to be prepared to guide our doctors!

 

 

 

 

42 replies

There’s a dynamo Thyroid Patient Advocate you should know about!

Sheila Turner TPA-UKI’ve been doing this a long time.

And early on in my activism, I became acquainted with someone else who was fighting for better hypothyroid diagnosis and treatment. And she was a bulldog! She chose NOT to “walk the fence”… instead speaking the bold truth about the scandal of the current popular thyroid diagnosis, as well as treatment with thyroxine for all too many. She has numerous times over the years written the governing bodies in the United Kingdom as to the problem, including with her communication “hundreds of references” to available research and studies to back up the issue.

Her name is Sheila Turner, and she’s the founder of Thyroid Patient Advocacy in the UK (TPA-UK).

And Sheila is a HERO!

Similar stories

Like myself and millions of you, Sheila suffered on thyroxine, which she also terms as “monotherapy”. She had “fatigue, weight gain, coldness and hair loss”–the latter even all over her body! And her pain was so bad that she couldn’t even pick herself up off the floor.

She finally managed to find a maverick doctor who put her on Natural Desiccated Thyroid, and she says “The sun came out!” She has now been happily pain-free and symptom-free for over 13 years. I identify, Sheila!

And her transformation led to the creation of her TPA-UK website and thyroid support forum just for UK patients and more, “dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.” The use of the word IGNORED couldn’t be better said, Sheila.

Others who work with TPA-UK

What I have loved about Sheila’s website and work are all those who are associated with it. They are:

– Barry Durrant-Peatfield, (UK) MB BS LRCP MRCS who serves as Patron and medical advisor
– Malcolm Maclean MD (UAE)​, a Scot practitioner who has rejected the idea that being “normal” in labwork means a patient couldn’t possibly have a thyroid problem. Dr. Maclean also wrote a brilliant STTM Guest Blog post about the effects of high doses of iodine
– Kent Holtorf, MD, the medical director of the Holtorf Medical Group and non-profit National Academy of Hypothyroidism.
– Gina Honeyman, DC, owner of the Center for Metabolic Health, LLC and co-author of a fabulously detailed book titled “Your Guide to Metabolic Health.” 
– Jacob Teitelbaum, MD,  a board certified internist and Medical Director of the national Fibromyalgia and Fatigue Centers and Chronicity.

Sheila’s latest concern and confrontation: Possible removal of Liothyronine (T3) from the NHS Prescription list

Just one more example of Sheila’s persistent and unflagging fight for better treatment, she has stood up in immediate defiance about the possible removal of T3 medication from the publicly-funded National Health Service (NHS) Prescription List–a potential removal as recommended by the NHS-funded program called PrescQIPP. (Only the second middle link on their website is working for me to view the Drop list.)

PrescQIPP is recommending the following:  

  1. They do NOT recommend the prescribing of liothyronine or T3-containing products for the treatment of primary hypothyroidism
  2. They do recommend prescribing of thyroid hormones in line with Royal College of Physicians guidance (which means thyroxine, T4-only, monotherapy).

The rationale of the above ridiculous comments? Are you ready??

– T3 has a short half-life

– Steady-state levels cannot be maintained

– No robust evidence i.e. has not been shown to be more beneficial that levothyroxine with respect to cognitive function, social functioning and well-being

– Inconsistent with normal physiology

– Insufficient clinical evidence of effectiveness and cost effectiveness to support the use of liothyronine (either alone or in combination) for the treatment of hypothyroidism. 

To the contrary, the evidence of consistently-reported therapeutic efficacy of T3-containing medications by a huge and growing body of thyroid patients worldwide is clearly important and worth consideration if the medical profession has even one intelligent and open-minded cell in their brains.

EVEN WORSE, their recommendations show how to move patients off their T3 and onto T4-only.

And in Sheila Turner’s latest newsletter, she states with her typical and dynamic activism:

The information about liothyronine by PrescQIPP is both mis-leading, and some of it is downright incorrect.  I am in the process of writing a response to PrescQIPP asking them to remove the hormone liothyronine from the ‘Drop’ list with immediate effect and I will give all the reasons they need to do this.  If such organisations as the BTA, NICE, NHS UKMi (Q56.6) and PrescQIPP learnt how the different thyroid hormones work, there would be no controversy and if L-T4 left patients with continuing symptoms, the active thyroid hormone T3 would be given automatically and without complaint.  I intend to ensure they know how thyroid hormones work.

Bottom line, Sheila Turner is a strong friend of thyroid patients who is persistent in her quest to drive in the TRUTH about what appears to be a backwards and dark ages medical system in the United Kingdom about how a thyroid works, about diagnosis, and about successful treatment protocols. And what Sheila might achieve in the UK will only help the rest of us!

You are a hero, Sheila!

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

– CHECK OUT THE LATEST VIDEO, which includes patients in the UK, and which underscores the FALLACY of T4-only, thyroxine treatment: https://www.youtube.com/watch?v=2n0NfAUyOKo

– Have you Liked the Stop the Thyroid Madness Facebook page? It’s full of daily inspiration and information based on solid patient experiences and wisdom!

– TPA-UK forum: http://www.tpauk.com/forum/

Read more on Sheila’s website:

http://www.tpauk.com/main/article/rcpbta-failures-harming-approx-300000-uk-citizens-suffering-symptoms-of-hypothyroidism-part-1/

http://www.tpauk.com/main/article/tpa-survey-finds-thousands-of-patient-counterexamples-to-l-t4-monotherapy/

http://www.tpauk.com/main/article/its-not-all-in-our-head-professor-weetman/

http://www.tpauk.com/main/article/the-best-clinical-guidelines-money-can-buy-a-look-at-guidelines-bias-and-thyroid-treatment/

http://www.tpauk.com/main/article/on-the-clinical-diagnosis-and-treatment-of-hypothyroidism/

65 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

 

 

 

 

 

 

 

 

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