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Medical Boards and the TSH: how they fail thyroid patients worldwide!

STTM Texas Medical Board“A learned fool is more a fool than an ignorant fool.”
                        ― Molière

 

In 2008, a news press appeared about the discipline of a very popular and well-liked doctor in Texas, USA who treated many hypothyroid patients.

And for what?

Under the column titled NONTHERAPEUTIC PRESCRIBING, it stated:  The action was based on Dr.________ prescribing Adipex, Adderal and Armour Thyroid to patients when such medications were not indicated.

Adipex and Adderal are both central nervous system stimulants, and we can’t comment one way or the other.

But the mention of Armour thyroid as “not indicated” was a sure sign that this medical board was using the ridiculous TSH lab test range to decide whether a thyroid medication was needed or not. We’ve already seen numerous and similar disciplinary actions brought upon well-liked and wise doctors like Dr. Peatfield and Dr. Skinner of the UK, Dr. Derry of Canada, and Dr. Springer in the US–all who dared to make obvious symptoms of one’s hypothyroid state more important than ink spots on a piece of paper. There have been many others.

Just to clarify: TSH stands for Thyroid Stimulating Hormone and is a messenger hormone released by your pituitary gland with the purpose of “knocking” on the door of your thyroid to tell it to produce thyroid hormones. So the implication is that if the TSH lab result falls in this so-called “normal range” (which in itself is a travesty), by golly everything must just be fine with your thyroid. You will read an interesting and explanatory chapter on the TSH in the revised STTM book as well as more information by Dr. Jeffrey Dach in the STTM II book.

But thyroid patients all over the world know first hand that the TSH lab result has been a complete failure. It can look “normal” even while we have clear symptoms of hypothyroidism. And it can take years and years before it rises high enough to show that something is quite wrong with the function of our thyroid.

A side note: the Association of American Physicians and Surgeons (AAPS) filed a lawsuit against the entire Texas Medical Board (TMB) and its officials in 2014. Though unrelated to thyroid treatment, they cited Manipulation of anonymous complaints, conflicts of interest, violation of due process, breach of privacy, and retaliation against those who speak out.

Kymm is a good example of the TSH fallacy in diagnosis

Take Kymm, a 45 year old woman. She had manifested hypothyroid symptoms for 15 years since the birth of her daughter. Yet during those entire 15 years, her TSH lab result had been completely “normal” in the upper 1’s and lower 2’s. Her hypothyroid state had never been “indicated” based on the typical and widespread gold standard of diagnosis used by medical professionals: the TSH.  As a result, she simply continued to suffer with easy weight gain, chronic depression, thinning hair, rising cholesterol, dry skin and an increase in stress on her adrenals. (And she did finally start on Natural Desiccated thyroid aka NDT, with adrenal treatment…and soared).

Kymm is not an oddity.  Thyroid patients on internet groups report going years with a normal TSH and no diagnosis, yet clear symptoms which are ignored by their TSH-obsessed doctors.  So their doctors may have avoided disciplinary action by going strictly by the TSH lab test, but did they truly practice the art and science of healing??

A doctor is disciplined for allowing a patient’s TSH to be suppressed

A horrendous disciplinary action happened to a California physician when it came to the thyroid treatment of one of his patients named as V.G who had had her thyroid removed. She had dizziness, dry skin and fatigue. He first put her on .125 levothyroxine, which only barely raised her T4 with a low T3. She continued to have the above symptoms, but also complained of nervousness, palpitations and weakness. He then moved her over to two grains of Armour, one brand of natural desiccated thyroid (NDT). The disciplinary action states:

Lab test results dated November 2, 2010, indicated that THS [sic} levels were suppressed, suggesting that V.G. was receiving too much thyroid hormone. However, at V.G.’s subsequent office visit on November 30, 2010, Respondant made no change to V.G’s thyroid medication. (#15)

The patient also had high cholesterol, plus symptoms of PCOS–both clear symptoms of continued hypothyroidism even though they claim she was receiving too much thyroid hormone! By point #17, after the patient had been raised to 3 grains, it reports a slight lowering of cholesterol and normal triglycerides, yet it was stated once again that she was on too much thyroid hormones due to a suppressed TSH. The bombshell comes in #19, it which states:

Respondent was grossly negligent in the care and treatment of V.G when he failed to recognize abnormal thyroid function tests and failed to properly adjust thyroid medications.

In other words, the California Medical Board was claiming that this doctor should have LOWERED the medication due to a suppressed TSH, in spite of the fact that she continued to have clear hypothyroid problems on the lower dose of 2 grains. Scores of thyroid patients who’ve had their thyroid meds lowered due to a suppressed TSH will tell you that their hypothyroid symptoms got worse, not better.

(If symptoms improve from lowering desiccated thyroid due to a suppressed TSH, that is more about the relief of hyper-like symptoms caused by low iron or low cortisol–either which NDT will reveal and aggravate until treated. See www.stopthethyroidmadness.com/ndt-doesnt-work-for-me  Also, there is a possibility that V.G.’s low T3 was due to a high Reverse T3, which will occur in the presence of low cortisol, low iron and/or inflammation.)

As far as a suppressed TSH, informed thyroid patients worldwide, who when optimally treated on NDT with the complete removal of hypothyroid symptoms (plus a healthy blood pressure and heart rate), find that it’s quite normal to have a suppressed TSH without one hint of symptoms of being on “too much thyroid hormone”!!!

Medical Boards can be a problem for thyroid patients and good doctors alike!

In the United States, there is a Federation of State Medical Boards with the stated purpose of “protecting the public from the unprofessional, improper and incompetent practice of medicine…”, yet the very boards which state they are protecting us from professional incompetence end up supporting incompetence via their flagrant ignorance about the TSH lab test and their dubious “discipline” of doctors who end up changing our lives and well-being!!

Or in the United Kingdom, we have the General Medical Council with the stated purpose of helping ” protect patients and improve medical education and practice across the UK”….yet they completely hounded Dr. Gordon Skinner who successfully treated thyroid patients, even though their TSH results erroneously implied that not a thing was wrong. Additionally, the GMC has brought at least 30 cases against Dr. Sarah Myhill, who also had the courage to treat her patients in spite of a so-called normal TSH.

Dr. Myhill so wisely stated: “Doctors who fail to toe the drug-industry-driven, conventional-medicine, symptom-suppressing line are singled out for special attention by the establishment”

Are Medical Boards useless?

Most informed thyroid patients would clarify that Medical Boards have good intentions. They can play a role in protecting us from true incompetence or negligence from those we put our trust in. They can serve a role in protecting us from sexual misconduct and the inability to practice safely due to substance abuse.

But when it comes to the highest and best treatment of our thyroid disease, medical boards DO THYROID PATIENTS NO FAVOR by disciplining doctors who….

  • have the wisdom and courage to look at the clinical presentation of clear symptoms rather than simply a “pituitary hormone” lab test with both its ridiculous normal range and its FAILURE to measure whether all organs and tissue are receiving enough thyroid hormones…
  • pay more attention to symptom relief on natural desiccated thyroid  (with good heartrate and blood pressure) rather than obsessing about one’s suppressed TSH lab test when thyroid patients are optimal.

As Albert Einstein so wisely stated, the measure of intelligence is the ability to change. Will Medical Boards grow up and change in their knowledge of thyroid treatment? No one more than maltreated thyroid patients worldwide can fervently hope so, as well as forward-thinking doctors who have been wrongly harassed by their medical boards in their treatment of hypothyroidism.

JanieSignature SEIZE THE WISDOM

 

*For more detailed information on the history of Medical Boards and problems, check out the book titled Medical Licensing and Discipline in America: A History of the Federation of Medical Boards. 

* Join the STTM Facebook page for tips, information and inspiration. 

* Do you have both the STTM books? They are extremely useful in making you an informed thyroid patient based on the experiences and wisdom of patients before you worldwide!

 

 

 

22 replies

The Case of the Missing Thyroid Nodules

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Have you ever had thyroid nodules? Read the real life testimony of thyroid and Hashimoto’s patient Cheryl and how she single-handedly removed her nodules with iodine and selenium…even though she has Hashimoto’s disease!  ~Janie, hypothyroid patient and site creator

Remember: this is just Cheryl’s remarkable experience and information. Each person reading this has to decide for themselves or in working with their doctor.

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My first thyroid ultrasound came as I was fighting for proper thyroid care.

The new doctor I had just recently hired had decided that my thyroid looked “spongy.” I knew that an ultrasound was a step up on the ladder that would eventually lead to a diagnosis and therefore treatment.

Within three days after the ultrasound study, my doctor called me and stated she was referring me to an endocrinologist. Multiple nodules covered my thyroid and several were going to need a biopsy. It would be much later before I found out how many nodules I had and exactly what shape my thyroid was in.

To say that those words, nodules and biopsy, scared me would be an understatement.

Never the less, I did what so many of us do when confronted with a health issue. I hit the Internet. First, I looked up the words “Thyroid nodules.” What exactly did that mean? Was it a nice way of saying I had cancer? Thyroid nodules, according to Mayo Clinic, are “solid or fluid-filled lumps that form within your thyroid.” The article went on to state that most are benign (over 95%) and not serious. That was not enough of a definition. I wanted, needed, and felt I deserved more information.

The next site, The American Thyroid Association page (which is good with this info but lousy with other parts), said virtually the same thing, only adding that it was an abnormal growth of thyroid cells on the thyroid gland. I kept perusing the internet, reading anything and everything I could find on thyroid nodules including the size at which a nodule becomes clinically significant (1cm and over) and needs a biopsy. I also found that not all nodules are solid abnormal growths but that some are the result of tissue breakdown. Those are the fluid-filled cysts and can occur due to Hashimoto’s.

Once I was satisfied with the information I gathered on the how and why of nodules- I made it my next mission to find out about biopsies of these “abnormal growths.”

The biopsy, and was I going to die?

What I learned was that Fine Needle Aspiration is the preferred method to biopsy a clinically significant thyroid nodule, and the doctor usually performs it right in the office. The endocrinologist inserts a hollow needle into the “lump” and extracts a sample of cells for analysis. It is a safe and relatively painless procedure.

The biopsy went flawlessly, as they always do, and my results came back: The lumps, numbering 21, (with only two being significant), were classified as being hyperplastic (adnomatoid) nodules. Being benign, they mostly contained follicular cells, Hurthle cells, and some foamy macrophages. When I asked about treating my thyroid, the nodules, and medication, I got the usual answer. “We aren’t doing anything. We are going to watch and wait.” I left that endocrinologist’s office with a sense of defeat. I was for sure I was going to die and no one in the world was going to help me.

The fighter in me did not stay down for long.

I was not going to “watch and wait.” “Not this girl,” I thought. It was obvious to me that my thyroid was floundering and needed help! By the time I got home from the follow up visit, about an hour and half away, I once again hit the World Wide Web to educate myself on the pathology findings. The next phase of my journey for true thyroid care began.

In the days immediately following my biopsy results, my primary care physician finally agreed to test my Free T3, Free T4, and both antibodies tests. When the results of those tests came back, they clearly proved my suspicions. My thyroid was down for the count. It was then that my doctor agreed to medication and natural desiccated thyroid was my choice (T4/T3 can work well, too). She started me off small with one 60 mg pill a day (…which is meant to be raised until we are optimal. How we raise is also in Chapter 2 of the updated revision STTM I book).

But, I did not stop there.

I had nodules that the field of medicine had completely disregarded. I started reading on how to treat an under medicated thyroid. I read about what nutrients and supplements the thyroid had to have for proper functioning. I started digging into benign tumors and how to treat them as well. I, then, packaged that information into a regimen of supplements made easy by online ordering.

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My regimen to begin with consisted of a working NDT (From Janie: this can also be T4 and T3) and selenium. I started the selenium first because I understood that it was critical to the thyroid. So vital, in fact, that the body will take selenium from the brain for thyroid use. It was determined from the lab/biopsy results that I had Hashimoto’s and I had heard that people with Hashi’s should not take iodine. Through my research, though, I began to understand that those with Hashi’s could take iodine but do need the selenium to protect the delicate thyroid. So, I started my selenium (400 micrograms a day). I began taking it a full two weeks before my iodine. I did not want to have a Hashi’s flare from taking iodine and knew the selenium would need a while to build up completely in my system.

Iodine supplementation was next

I had visited several sites regarding the use of iodine to cure cancers and tumors. I had joined an iodine group and absorbed Stephanie Buist’s information. I visited Breast Cancer Choices.org and found a ton of helpful information there as well. I educated myself on the many uses of iodine and the vital role it plays in the human body. I learned that as important as selenium was to the thyroid, iodine was just as important. It is the main ingredient in all thyroid hormones.

I was cautious with the iodine. I worked on building up a tolerance. I started with one drop of J.Crow’s Lugol’s 2% iodine solution a day for one week. I then “upped” the dose to 2 drops (6mg) a day for a week. And so on and so forth until I exhibited “hyper” symptoms at which time I dropped back down to the next lower dose. My body was set at 33 milligrams of iodine a day. I was going to heal my thyroid or die trying.

(From Janie: going low and slow is a good idea with iodine. It starts a detox of what we have too much of in our bodies: bromide, chloride, fluoride, etc. This is true for all but especially true if you have Hashimoto’s.)

What happened next has left many, including my physician, declaring a miracle.

Three months after the initial ultrasound, my doctor ordered a repeat. The results left her scratching her head and claiming divine intervention. In three months, I had lost 14 smaller clinically insignificant nodules. Fourteen nodules on my thyroid just disappeared. When I asked her, “How does that happen?” her response was “I don’t know – God.” I smirked but I knew it was the iodine and selenium I had religiously been taking.

As an experiment, and to confirm to myself what I already knew, I did come off the iodine and selenium, for a while, to see what would transpire. I told no one what I was doing, as I wanted to see it for myself, without influence or interference. For four months, I took no iodine or selenium- only the Armour. The following ultrasound showed a new nodule. That was proof enough for me. I went back on the iodine and selenium and continued to take my Armour, which, my doctor had upped to 2.5 grains a day.

Now, three years later, I am nearly “lump” free.

I no longer have any clinically significant nodules. In fact, I only have three nodules and the ultrasound reports shows that they are shrinking as well.

However, that is not all. For the first time since my fight for thyroid care began, my thyroid itself is no longer swollen and is in “acceptable normal limits,” meaning it is a “normal” size. While I know my thyroid will need consistent life-long care, as I do have Hashimoto’s, I no longer feel like I am a slave to my supplements or that my thyroid is more of a burden than a blessing. The fight for my thyroid, as long and as arduous as it has been, has been worth it. The “the Siamese sisters of the thyroid,” what I now call selenium and iodine, have given me my thyroid, and consequently, my life back. The ultrasounds alone prove it.

Cheryl

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Read more about selenium. Here’s good information about iodine.

Keep track of any US-made desiccated thyroid products. There were three that were rightly recalled in 2020, for example.

Do you experience hyper-like symptoms when you try to raise a working desiccated thyroid or T3 in your treatment in order to get optimal? That can point to an adrenal issue. Read here.

Have you raised a working desiccated thyroid or T3 and still feel hypothyroid? Read here.

And this is your patient-to-patient book, below, with Hashimoto’s. Order here.

242 replies

Part II: Erfa Canada says new thyroid pills are fine: Thyroid Patients worldwide exclaim HOG WASH!!

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Another nightmare for thyroid patients who depend on Natural Desiccated Thyroid.

If you are new to this subject, 2014 saw new batches of the Canadian Erfa Thyroid come out, along with patients worldwide reporting a return of hypothyroid symptoms in the worst way…sooner or later. It was eerily similar to what happened with Armour thyroid in 2009 after Forest Labs changed the way the pill was made. 

You can read about this travesty with Erfa Thyroid on the following May 8, 2014 blog post page, here: //www.stopthethyroidmadness.com/2014/05/08/dear-erfa-canada-stop-nonsense-change-desiccated-thyroid-back/  It is followed by a massive amount of posts, comparing batch numbers as well as symptoms which have returned. It’s all a must read!

This morning, I received a message from a thyroid patient who heard from Dr. Knafo, the Medical Director at Erfa Canada 2012 Inc. He stated to her:

We just received all the retesting on the product and everything looks fine on our end. Did you have a blood test done ?

In other words, when you look at his last question, the implication is the same that has been stated to others: that the symptoms which she has seen return on the new Erfa Thyroid are about HER, not about the pills.

But we also now have an official announcement from Dr. Knafo, and is exactly what I feared would be stated: 

Dear All,

I wanted to thank all of you for your response and wanted to update you on the results we got from the retesting done by an independent lab. All the side effects reported were sent to Health Canada and all the retesting were done by a reputable independent lab.

We got about 70 patients reporting to us and there was 55 lack of efficacy reports. Half of the time we had the lot number and we could do an analysis of which lot were involved. There was NO relations between the batches involved and the side effects reported as many batches (50%) were trace back to our older production. Regardless, we decided to retest the batches that were involved (both from the older factory and new one) and sent everything to an independent lab.

There was no difference in concentration from one batch to the other. We did not change our formulation, suppliers nor our manufacturing technique.

We have over 10,000 patients in Canada only and reports from Canadian patients were much less in numbers. We cannot explain why many of you are experiencing those symptoms however I think the right approach is to take every single case separately and understand if there is no other variables involved. The number of reports are however consistent with the increase of sale (we sold 3 times more Thyroid in the past year).

The test results are available in our office for anyone that wants to consult them.

I hope this update clarify a bit more the situation and action we put in place. Please feel free to contact me anytime.
Regards,

Dr H. Knafo
Medical Director ERFA Canada 2012 inc.

And I want to make my response to Dr. Knafo public here:

Dear Dr. Knafo,

Thank you for the kind way in which you expressed yourself concerning the testing of the “new” Erfa Thyroid by an Independent lab.

I want to underscore to you that the reason Erfa has seen a three-fold increase in its sales last year is because Erfa used to be a great product for all involved. Patients had found it to be as excellent as the “old” Armour used to be for decades, plus they have always loved that they can do Erfa Thyroid sublingually. Additionally, many patients in Europe have had access to Erfa, which was important when knowledge about Natural Desiccated Thyroid is so pitiful in Europe.

Understand that I have worked directly with patients for 12 years as an activist for better thyroid treatment. Natural Desiccated Thyroid (NDT) changes lives and is proven over and over by worldwide patient experiences to be a much better hypothyroid treatment than T4-only. It even edges out the combination of T4 and T3 by its positive effects!

Granted, there are many patients who have reported not doing well on NDT over the past decade. But that wasn’t because NDT didn’t work. We figured out early on that there are two main reasons why NDT may not seem to work: a cortisol issue (low or high), and/or low iron. So patients learned that they must get the right testing for both of those, know how to read the results, and treat both before they will do well with NDT. You can read about all this here: //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

And of course, some reported NDT not working because they were being held hostage to the TSH lab test, which we as informed patients know is the WORST test to be dosed by. You will remain under-dosed if a doctor goes by the TSH range. Read this: //www.stopthethyroidmadness.com/tsh-why-its-useless

So because of all the above, I had to discern if all these complaints about the “new” Erfa Thyroid were actually because of any of the above.

But Dr. Knafo, I quickly saw that no, the vast majority were not. The bulk of complaints…and bad experiences…have been coming from patients who were doing wonderfully on Erfa Thyroid for awhile, only to see their symptoms return exactly when they started using the pills that were now being made at a different facility.

You stated in your announcement: There was no difference in concentration from one batch to the other. We did not change our formulation, suppliers nor our manufacturing technique. What is missing from that statement is that you have, in fact, stated to others than Erfa Thyroid did change the facility in which the pills are made. And as far as the “manufacturing technique”…patients clearly see a difference in the “new” batches. They are now slightly shinier, the indentations are deeper, and the new pills have a blotchy look that wasn’t there before.

The photo above shows the difference between the old and new.

Of course, we don’t know if what we are observing in the new pills explains anything. All patients DO know is that all-too-many of them are seeing their hypothyroidism return with the new Erfa Thyroid.

I think you are a sincere man, Dr. Knafo. We appreciate that about you. But…something has, in fact, changed in Erfa Thyroid. And to dismiss the growing overall body of patients worldwide who are not doing well anymore on Erfa thyroid is a bad move, just as it’s insensitive to state that that there are no other variables involved so thus, it must be about the individual circumstances.

Sincerely,

Janie A. Bowthorpe. M.Ed.
//www.stopthethyroidmadness.com
https://www.facebook.com/StoptheThyroidMadness
//www.laughinggrapepublishing.com

P.S. Go back and read all the comments on the May 8th blog post linked above. It’s patently clear that the new Erfa Thyroid has changed, whether testing says otherwise.

UPDATE: thyroid patient S. compiled the following as of August 2015 and these represent expiration dates:

The good batches (no one reported them as bad, and one or more people reported them as good) are: 8/15 (reported by 3 people) and 4/17 (4 reports).

Some batches were reported as both good and bad by different people: 5/17, 7/17, 7/16, 2/17, 10/16, 3/15.

Some were reported only as bad: 11/15 (3 reports); 11/17 (1 report); 3/16 (3 reports); 8/17 (3 reports).

No reports for 1/17, 3/17 or 6/17 so these are unknown.

1,286 replies

Dear Erfa Canada: Stop this nonsense and change your desiccated thyroid back!!

Screen Shot 2014-05-08 at 8.13.37 AMNot again. 

It appears that one more time, a manufacturer of what was once a very good natural desiccated thyroid product has ruined it. 

In 2009, thyroid patients whose lives had changed in major and positive ways thanks to Armour, a brand of natural desiccated thyroid (NDT) made by Forest Labs, saw their hypothyroidism come right back. Why? Forest, in all their wisdom, decided to raise the cellulose, lower the sucrose, and make Armour a much harder tablet. And somehow in all that change, patients reported all their hypothyroid symptoms now returning. It was a disaster.

As a result of the above, thyroid patients moved to other natural desiccated thyroid products, and Erfa of Canada was one. And oh did patients love it. It was made like the old Armour, and we could also do it sublingually–a method many of us like. Erfa calls their NDT product simply “Thyroid” and it has always come in sizes of 30 mg, 60 mg and 125 mg.

Fast forward to 2014, and patients who have been doing wonderfully on Erfa are now reporting a major return of their hypothyroid symptoms!

And what’s the scuttlebutt we hear from Dr. Henri Knafo, the Medical Director for Erfa Canada?? That they changed the facility from which the tablets were made but not the ingredients. Really??

This is particularly disturbing for European patients whose lives have changed in positive ways thank to NDT, and know the inherent problems with T4-only.

All too many European doctors and their esteemed medical organizations are clueless about the efficacy of Natural Desiccated Thyroid and turn their backs on prescribing it. Like too many American and Canadian doctors, they worship the ground that T4-only medications unfortunately walk on, and fail to see the widespread problems that thyroid patients have on T4-only. So patients suffer. But luckily, thyroid patients in Europe had been pleased about being able to find Erfa in a few places and thus, see their lives change in major positive ways.

But that has now changed for European Thyroid Patients thanks to this latest egregious change in Erfa’s Thyroid, and the situation is horrific for patients once again, just as it was in 2009 when Forest changed Armour.

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What can you do??

  1. If you were once doing wonderfully on Erfa, and now see a return of your symptoms, email Erfa’s Medical Direction here: henri.knafo@eci2012.net  Spell out how you were BEFORE the change, and what is going on SINCE the change. And email him multiple times, if necessary. Make it clear. Make it often.
  2. Post here what has happened to you on the “reformulated” Erfa. This is a widely read blog post and website for informed thyroid patients as well as doctors.

In the meantime, if you need to move over to another brand…or if you CAN change over where you live….here are your options for better thyroid treatment.

PLEASE POST THE LOT NUMBERS of the bottles of which your symptoms returned!

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UPDATE May 12, 2014: A gal from Sweden heard from Erfa today, and they are admitting there have apparently been a bad batch or batches. I’ll keep you updated.

UPDATE May 15, 2014: Dr. Knafo has posted the following:
Dear all, 

As you know we are currently investigating all the complaints that I received and I would like to ask for your help in order to complete the investigation.

1.       Do you have a lot number and exp date written on the bottle of Thyroid ? If so please give it to us.

2.       Can you tell us what strength(s) you bough (30, 60 or 125mg) ?

3.       Also please mention what pharmacy you bought the product from.

Once this information is received we can go forward with the investigation.   Please feel free to email me if you have other questions

Dr Henri Knafo, MD, M.Sc, B.Sc

Email : Henri.knafo@eci2012.net

 

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* Watch for daily informative postings on the STTM Facebook page.

* Have you signed up to receive notifications of STTM’s blog post?? Go to the bottom right of the home page on STTM and sign up!

* Need to talk to other patients? Talk to Others page. You’ll also see many other great groups who don’t bash other groups (I hope), care about patient experiences and wisdom over “opinion”, and can be friendly.

* Do you have the STTM books?? You HAVE to be informed to get well.

* Learn why Synthroid or other T4-only meds by themselves are not the way to go in your thyroid treatment.

520 replies

An Open Letter to All Physicians from a Nurse about thyroid treatment

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A Thyroid patient who is also an RN was shocked to see the contents of a letter that a patient’s doctor had sent out to this patient. It was filled with terrible inaccuracies about thyroid treatment, she exclaimed, and she was horrified. No wonder so many thyroid patients are exasperated with their doctors!

So she compiled this excellent letter, refuting several comments made by this doctor, but directing it to ANY doctor who holds these false views.

Take the time to share this on your Facebook pages, your blogs, to your doctor, you name it. Spread the word as we work to Stop the Thyroid Treatment Madness!!

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An Open letter to physicians regarding the use of “Pig Thyroid Hormones”

I am writing this letter in response to any physician’s stance against the use of any forms of Natural Desiccated Thyroid (NDT) hormones as replacement for inadequate thyroid hormone levels. I will attempt to include links to medical-journal/peer-reviewed/scientific-based information to help you catch up on the latest in thyroid treatment and information.

I know that you, as a physician, have very limited time when it comes to researching various information on treatment protocols. I acknowledge that you were given limited training on thyroid diagnosis and treatments during your medical school programs, as well as in internship and residency programs, and have likely had to rely on the information provided by Pharmaceutical sales reps.

As such, I believe that your views are unfairly skewed and not fully fleshed out towards the use of T4-only medications such as Synthroid, Levoxyl, and others.

1) Regarding your assertion that Synthroid/T4 only medications are “bio-identical” in structure and thus, are an “adequate replacement” for a thyroid that makes 5 hormones (T4, T3, T2, T1 and calcitonin)

Please review the following photos, showing the chemical structure of human thyroxine (T4) and the chemical structures of T4-only medications such as Tirosint and Synthroid: (source: Synthroid Manufacturer’s Full prescribing information). As you can see below, there is a great difference between the molecular structure of Synthroid and human thyroxine.

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And below, in the top photo, is the human thyroxine (T4) molecule (Source: Chemical and Engineering news: https://pubs.acs.org/cen/coverstory/83/8325/8325thyroxine.html)  Compared that to the T4 molecule found in Nature-throid, bottom photo, which is one of several commonly-prescribed forms of Natural Desiccated Thyroid (NDT) medication.  (source: Nature-throid prescribing information http://www.nature-throid.com/images/Nature-Throid-PI-Rev041121-03.pdf)

As you can see, the molecules are identically formed, and therefore are the ones which are truly “bio-identical in structure”.

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2) Regarding your assertion that the TSH is a stable and reliable test which should be looked at first, while T4 and T3 levels fluctuate frequently and are not stable enough to be considered. 

Here are several medical journal articles which should make anyone rethink the use of the TSH lab test:

http://www.sciencedaily.com/releases/2010/03/100315230910.htm

http://jcem.endojournals.org/cgi/content/abstract/90/9/5483

http://www.thyroid-info.com/articles/david-derry.htm

http://thyroid.about.com/od/thyroiddrugstreatments/l/blderryb.htm

And not only the above, but there are a large body of thyroid patients who, for decades, have reported having a very “normal” TSH lab test while having very obvious symptoms of hypothyroidism, including a low temperature, fatigue, exercise intolerance, feeling cold, dry skin, depression, hair loss and more.

3) Regarding your idea as to what amount of T4 or T3 a human thyroid produces in a day (such as 100 mcg T4 and about 6 mcg T3 daily).

That information will vary. For example, another source states that a human thyroid makes on average between 3-5 grains of thyroid hormone per day:  “Estimates of average normal secretion for euthyroid humans are 94-110 µg T4 and 10-22 µg T3 daily (300).  If  you need more, it can be due to exogenous desiccated thyroid (giving it to yourself) vs. the superior absorption of natural release of thyroid hormones.” 

Source: http://www.thyroidmanager.org/chapter/thyroid-hormone-synthesis-and-secretion/

Either way, it varies according to each individual as to what amount of NDT will remove all symptoms.

4) Regarding your assertion that very few thyroid patients have issues with conversion of T4 to T3: 

As you may or may not know, many situations can cause problems with the conversion of T4 to T3 within the body, including a) mineral deficiencies (particularly low iron – a common issue in hypothyroid patients), b) gastrointestinal problems, c) liver problems, d) adrenal cortisol deficiencies (VERY common in T4 only-treated patients due to the inadequacy of being on nothing more than a storage hormone 5) the use of many commonly-prescribed medications including beta blockers or pharmacological doses of corticosteroids.

Source: http://www.naturalendocrinesolutions.com/articles/do-you-have-a-t4-to-t3-conversion-problem/

See Also:

http://press.endocrine.org/doi/abs/10.1210/jc.2008-1301

http://press.endocrine.org/doi/full/10.1210/jcem.84.2.5534

In addition to all the above, there are many thyroid patients who report that their FT3 “looked right” on T4-only, yet they continued to have symptoms of hypothyroidism while on thyroxine.

5) Regarding your assertion that there is no good way to dose Armour and other Natural Desiccated Thyroid Products

The growing body of thyroid patients around the world have frankly not had any issues with dosing NDT. Most dose it twice a day, such as first thing in the morning, and then the early afternoon. And it’s worked well.

Additionally, there are a variety of different strengths to choose from by the manufacturers of Natural Desiccated Thyroid meds such as Armour, NatureThroid, WP Thyroid, NP Thyroid, Erfa etc. For example….http://www.nature-throid.com/available_strengths.php

http://www.nature-throid.com/images/Nature-Throid-PI-Rev041121-03.pdf

6) Regarding the idea that a supposed “high dose of T3” has a stimulant effect…or is like a large dose of caffeine…or makes you feel good…or is addictive…or doesn’t make much sense physiologically…or may actually be dangerous, especially for the heart. 

I would hope that any doctor who proclaims to be a hormone-balancing “expert” would have a basic working knowledge of the need for T3 hormone in adequate levels for optimal cardiac functioning. Here are some helpful links which demonstrate the need for adequate T3 in order for cardiac functioning to be considered “optimal.”

The Journal of Clinical Endocrinology & Metabolism has reported that long-term levothyroxine replacement therapy in young adults is associated with cardiovascular abnormalities. http://jcem.endojournals.org/cgi/content/abstract/93/7/2486

And from this article: http://www.ncbi.nlm.nih.gov/pubmed/18221125 “Clinical studies have shown that mild forms of thyroid dysfunction, both primary (subclinical hypothyroidism and subclinical hyperthyroidism) and secondary (low T(3) syndrome) have negative prognostic impact in patients with heart failure. In these patients, the administration of synthetic triiodothyronine (T(3)) was well tolerated and induced significant improvement in cardiac function without increased heart rate and metabolic demand “

From this article: http://jcem.endojournals.org/content/93/4/1351.full.pdf  “Altogether, our data indicate that short-term administration of substitutive doses of synthetic L-T3 state reduces activation of the neuroendocrine system and improves LV SV in patients with ventricular dysfunction and low-T3 syndrome”

And this study: http://www.hindawi.com/journals/jtr/2011/958626/abs/ “The potential of TH (thyroid hormones) to regenerate a diseased heart has now been tested in patients with acute myocardial infarction in a phase II, randomized, double blind, placebo-controlled study (the THiRST study)”

And this statement, from this American Heart Association-sponsored study states: http://circ.ahajournals.org/content/107/5/708.long “…low T3 concentrations are a strong independent predictive marker of poor prognosis in cardiac patients and might represent a determinant factor directly implicated in the evolution and prognosis of these patients. “

To the contrary, hypothyroid patients are not seeking “high doses of T3”. Instead, they seek an amount of NDT that removes their symptoms of hypothyroidism, improves their temperature and metabolism, results in a strong heart and good blood pressure. When we achieve all the latter, we’ve noticed our free T3 in the upper quarter of the range, and the Free T4 around mid-range…and we have no symptoms of excess (if iron and cortisol is also corrected).  It’s all the result of adequate, physiologic doses for replacement, not high doses of NDT with its inherent direct T3.

We are NOT stimulant addicts or drug-seekers, and find that offensive. We are only seeking to replace what our thyroids are not giving us, and to regain a non-hypothyroid state as a result.

We are seeking human decency, wisdom and open-mindedness from our physicians. You would not deny a diabetic patient replacement with the hormone insulin, so why would you deny a person without adequate thyroid function all the right hormones, including the T3 hormone which is critical for every cell in the body to function properly? This seems cruel and unusual treatment in my book, and does NOT correlate with the “first, do no harm” portion of the Hippocratic oath!

7) Regarding the idea that patients are full of “bitter, angry, contentious discourse.”

Do try to understand how it feels to live in a body with a damaged or under-functioning thyroid and to have a doctor replace your missing thyroid hormones with nothing more than a storage hormone. We do not see healthy thyroids only producing a storage hormone. Living life without adequate thyroid hormones (particularly direct T3- the “active” thyroid hormone which every living cell in your body needs to function properly) leaves patients frustrated.

Additionally, put yourself in our shoes when you proclaim us “normal” based on a pituitary hormone, in spite of the fact that we continue to have hypothyroid symptoms. The latter test has repeatedly failed to correspond with how patients feel and function on a daily basis.

Imagine being held to a medication such as Synthroid, which then leaves you with inadequate thyroid hormones to obtain functional levels of daily living, optimal heart function and optimal hormonal balance. Imagine living your life in pain, depression, and with high blood pressure and cholesterol, with inadequate adrenal function, and all your sex hormones thrown off balance simply because your doctor is not open-minded or educated enough to grant you the use of natural desiccated thyroid which can make those symptoms disappear (in the presence of good iron and cortisol). Imagine being unable to get out of bed in the morning due to severe unrelenting fatigue and being unable to think properly due to brain fog caused by lack of thyroid hormones. Imagine missing out on the joys of life, and family, and being a functional member of society, simply because your doctor would not allow you to try a better form of medication. Would you not be upset with your physician if you knew there was a simple solution, yet you were repeatedly brushed off, symptoms ignored, and told to go on with living your half-life and to just “deal with it?”

8) Regarding the idea that Natural Desiccated Thyroid has not worked for some patients

Janie Bowthorpe has compiled several reasons why NDT doesn’t seem to works based on over a decade of reported patient experiences: //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me Can that many patients and their important experiences be unworthy of your open-mindedness and investigation?

In conclusion, I hope that you will read all the above with a more open-mind and rethink your stance on the use of Natural Desiccated Thyroid hormone. It is a proven safe and effective form of treatment for over 122 years and counting. Your patients are counting on YOU to do what is right!

Sincerely,

A Hashimoto’s and Graves patient for over 28 years, Post Total Thryoidectomy 2012. Happily out of heart failure and OFF BP and Cholesterol meds, OFF Cholesterol meds since June 2013- when my thyroid doctor put me on Natural Desiccated Thyroid.

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