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Here we go again, thyroid friends: Endocrinologists wear their pointed DUNCE hats.

Duncecap

Ah me.

Ever heard of Clinical Thyroidology?

It’s a physician-targeted publication by the American Thyroid Association (ATA). The ATA states they are the “leading organization devoted to thyroid biology and to the prevention and treatment of thyroid disease through excellence in research, clinical care, education, and public health.”

And a Letter to the Editor in the December 2013 publication of Clinical Thyroidology only underscores why so many thyroid patients report that they…

  1. Avoid Endocrinologists like the plague for the treatment of their hypothyroidism.
  2. Can hardly contain their disgust about Endocrinologists they have seen!

The letter is based on the March 2013 study I have mentioned before, titled “Desiccated thyroid extract compared with levothyroxine in the treatment of hypothyroidism: a randomized, double-blind, crossover study.” It was done by the Department of Endocrinology at Walter Reed Military Medical Center and headed by Thanh D. Hoang, DO and associates.

The objective of the study was to investigate the effectiveness of DTE (acronym for Desiccated Thyroid Extract, which is more popularly termed Natural Desiccated Thyroid for thyroid patients) compared with L-T₄ (more popularly known as T4-only for thyroid patients).

At the conclusion of the 16-week study, they found that…

34 patients (48.6%) preferred DTE therapy, whereas 13 (18.6%) preferred levothyroxine; 23 (32.9%) did not specify a preference, he said. Further analysis confirmed those who preferred DTE lost even more weight over a 4-month period.” i.e. the patients who preferred it “lost 4 lb during the DTE treatment, and their subjective symptoms were significantly better while taking DTE as measured by the general health questionnaire-12 and thyroid symptom questionnaire (P < .001 for both).”

Yet the study concludes: “DTE therapy did not result in a significant improvement in quality of life”.

And why did the study conclude there was no significant quality of life improvement? Is it possible that this study was flawed in ways they don’t understand…

Two easy answers:

  1. Patients canNOT be held hostage to the TSH lab test (which the study did for those participants) if we want to find that “significant” quality of life improvement!   When thyroid patients are at their very best with desiccated thyroid, they end up finding their TSH is below the so-called “normal” range, and without one iota of “hyper-like symptoms, i.e. no bone loss or heart issues”. (Hyper symptoms will only occur if there is an undiscovered or untreated cortisol or iron issue. See #4 below).
  2. We have to have optimal cortisol and iron levels with desiccated thyroid to achieve that “significant” quality of life improvement!

Back to the Letter to the Editor….

Doctors David S. Rosenthal, MD and Kenneth H. Hupart, MD proceed to present misinformed criticism and obtuse conclusions. The last part of their letter states the following…and I have bolded what I’m going to respond to:

…..Such nonphysiologic changes in serum T3 [serum T3 rose 23% and 36% in the participants] after DTE administration and resultant risks have long been known (2) and are the subject of concern (3). 

 

Exploring a role for DTE in the treatment of hypothyroidism with a well-designed, blinded, randomized clinical trial is laudable. However, when evaluating a therapy for a condition that affects millions of patients and for which an effective treatment already exists (4), this clinical trial should be powered and designed to detect adverse consequences. When the goal is physiologic replacement, care also needs to be exercised that normal physiology is restored. The study of Hoang and colleagues is provocative, but it does not achieve the minimum standard required to alter current clinical practice.

And my response to what I bolded:

  1. Risks? Concern? When are the risks and concern going to be mentioned about T4-only medications—the latter which forces us to live on ONE hormone, in spite of the fact that a healthy thyroid would be making FIVE. Where is the concern about the fact that a huge body of patients worldwide have continuing hypothyroid symptoms in their own degree and kind, either at the beginning of T4-only treatment, or the longer they stay on it? To the contrary, WE have concern when our doctors repeatedly ignore or blame those clear symptoms of continued hypothyroidism on other issues!
  2. Why are you so concerned about a higher FT3?? Thyroid patients have been doing fabulously, and have seen their lives change, on desiccated thyroid for over a decade now, and especially when we find our FT3 in the upper quarter of the range. Before that, there were a good sixty years of near-exclusive desiccated thyroid use! A higher range FT3 has done nothing more than strengthen our hearts, lower our cholesterol and blood pressure, rid us of depression and anxiety, improved bone strength, helped us lose weight, taken away the need to nap, improve our gut health, given us back our lives…and so much more.
  3. Can you be SO blind as to think that T4 treatment is that “effective”? Are you that destitute of observation about the clinical presentation of your T4-treatment patients who, sooner or later, complain of depression, rising cholesterol, higher blood pressure, aches and pains, hair loss, gut problems, the need the nap, heart problems, anxiety, weight gain and more symptoms of a POOR treatment?
  4. Have you not figured out that “adverse consequences” on desiccated thyroid, or even T3-only, are related to either inadequate iron and/or a cortisol problem? Patients are so FAR ahead of you in knowledge about the problems that cortisol and iron problems can cause with desiccated thyroid…and what to do about it. Once we correct those, we SOAR on desiccated thyroid.

A better way to look at the Walter Reed study

Nearly 49% preferred desiccated thyroid! That is nothing to sneeze about! It means something. It sends the beginning of the right message. And yes, it would have been a far greater percentage if those in the Endocrinology department had understood why it’s important NOT to go by the TSH, and why the participants needed to first be properly screened for their iron and cortisol levels, then property treated! And by the way, lab results have NOTHING to do with just “falling in the normal range”.

To all thyroid patients and friends worldwide:

Sadly, we all know that the majority of Endocrinologists we have seen wear Dunce hats. Of course, there are some exceptions in the Endocrinology field! We applaud those few courageous Endocrinologists who have dared to listen to our experiences and positive clinical outcomes.

But too many remain in a stubborn, dark world of their own, represented by the comments above—a mindset which only keeps us sick.

Your solution? Give your money elsewhere!!! Give your money to medical professionals who live in a lighter world and have an understanding of the efficacy of Natural Desiccated Thyroid (NDT), or even T3-only use, and who will let you teach them about the problems of cortisol and low iron, how to treat both, and how to read labwork (as the book will also help you do). P.S. Spanish in on sale for a limited time.

Seize the wisdom,

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Wall Street Journal’s recent thyroid article: 13 ways it could have been SO MUCH better!

Screen Shot 2013-08-06 at 1.05.29 PM(This post has been updated to the present day and time! Enjoy!)

As usual, informed thyroid patients can only roll their eyes about the latest example of a watered-down, thyroid-themed article in the media. This time, it’s from Wall Street Journal Online and appeared Monday, August 5th, 2013.

Now on the positive side, the title looks good: New Call for More Thyroid Options. 

But let’s set it straight: this is NOT new! Informed thyroid patients have been clamoring about better treatment for more than a decade!!

I started the Yahoo Natural Thyroid Hormones group in 2002 as a way to begin the important discussion about the efficacy of Natural Desiccated Thyroid as a treatment for hypothyroidism over T4-only. The Stop the Thyroid Madness (STTM) site first went up in December 2005–a compilation of worldwide patient experiences which included lives being changed thanks to natural desiccated thyroid (NDT). The STTM book by the same name first appeared in 2008, and the revision in 2011. The STTM II book came out in late 2014. Today, there are numerous thyroid groups all over Facebook which have been extolling the virtues of better treatment.

Let’s break the article down and go into further detail, correction or clarification–all which might have made this a MUCH more informative and accurate article:

1) Grass roots patient-activist organizations….and the doctor-founded National Academy of Hypothyroidism, say that the current screening test for hypothyroidism leaves out some symptomatic patients and that the main medication used to treat patients, doesn’t always alleviate many symptoms.

True! And let’s be more specific about that so-called “screening test”: it’s the inane use of the TSH lab test which has been a monstrous screening failure! The TSH is a pituitary hormone, NOT a thyroid hormone! And it can consistently look “normal” for years (according to the parameter of an erroneous man-made “normal” range), yet we have raging hypothyroid symptoms…all the while the patient has to hear his or her doctor state they need to “exercise more and eat less”. The “main medication” is the all-too-often lousy T4-only medication like Synthroid, Levoxyl, Levothyroxine, Eltoxin, etc. Yet, a healthy thyroid makes FIVE hormones, not just one.

2) They are calling for doctors to be open to other therapies, including a combination of synthetic hormones and the use of natural, animal-based ones.

True. But though adding synthetic T3 to synthetic T4 is a huge step in a much better direction and can be applauded (and so can being on T3-only), a multitude of worldwide patient experience has found that Natural Desiccated Thyroid has given these patients even better results (in the presence of good iron and cortisol levels). Doctors need to listen to that!

3) Hashimoto’s Disease: A Primer (box on the left side of the article) 

What a perfect way to lower the quality of an article. As usual, it contains the dark ages information about the use of the TSH, and mentions the “common” treatment of T4-only. They might as well have inserted a primal on blood-letting.

4) [In reference to Dr. Ridha Arem’s correct comment that “There are so many unhappy thyroid patients,”] :  Many of his mainstream medical counterparts disagree. “The vast majority of people are fine on the standard therapy,” says Jeffrey Garber, an associate professor of medicine at Harvard Medical Center and chair of the American Association of Clinical Endocrinologists Thyroid Scientific Committee. Still, he says, “there’s a whole group out there who just thinks we’re clueless. 

Yup, millions of informed thyroid patients worldwide would definitely put you in that clueless category, Dr. Garber.

5) The wide range of symptoms, so similar to those of many other diseases, can make diagnosis tough. 

Totally untrue, say thyroid patients! Thyroid disease has a common cluster of symptoms in patients, which can include one or more of depression, fatigue, the need to nap, rising cholesterol, rising blood pressure, achiness, hair loss, weight gain, inability to lose weight, dry skin, dry hair, achiness, a low mid-afternoon temperature (below 98.6F/37C) and so many more symptoms.

Additionally, we have noted that if our free T3 is mid-range or lower, or our Free T4 is low, along with the above symptoms, it’s a sure sign that we are hypothyroid. Finally, family history underscores it for others, as can an ultrasound. It’s not that difficult when you understand the clinical presentation of hypothyroidism over an ink spot on a piece of paper!

6) Newborns and pregnant woman are routinely tested. Experts recommend screening all women over the age of 35 every five years. 

And how does that help when the testing/screening is with the inadequate TSH lab test, which we, as patients, already know leaves millions of us undiagnosed for years.

7) For treatment, guidelines generally call for the prescription of levothyroxine, a synthetic version of a hormone called thyroxine, or T4, which is produced by the thyroid. The gland also produces one other hormone, Triiodothyronine, or T3. 

A healthy thyroid gland produces FIVE known thyroid hormones: T4, T3, T2, T1 and calcitonin. So what’s the motive to prescribe only a storage thyroid hormone???

8) Most doctors, says Dr. Arem, generally prescribe T4-only medications. But such medications may leave some patients with lingering symptoms such as fatigue and depression and, in some cases, low T3 levels. 

He’s right! But there’s more to the story. Even those T4-only treated patients who see a removal of those lingering symptoms still end up seeing them crop up the longer they stay on T4! T4-only treatment is NOT a pretty picture.

9) Some patients go to alternative health professionals to get prescriptions for drugs such as desiccated thyroid extract (DTE) prepared from animal thyroid glands, which include a combination of T4 and T3.  

Thyroid patients are NOT just getting their natural desiccated thyroid (NDT is the common term, not DTE) from alternative health professionals. They are also getting it from open-minded and progressive regular doctors who LISTEN to their patients experiences!

10) The danger here, Dr. Arem says, is such patients could end up with an excessive amount of T3, resulting in symptoms of overactive thyroids, such as anxiety and a fast or irregular heart rate. He advocates a combination approach with amounts tailored to the individual.  

With all due respect to Dr. Arem, who is light years ahead of his colleagues in many areas, an excessive amount of T3 is not because of the use of NDT. It’s because NDT will reveal the problems of inadequate iron or inadequate cortisol–either of which can cause T3 to pool high in the blood and not make it to the cells. When patients correct those, they eventually soar on NDT. A newer page on STTM explains why NDT appears to cause problems.

11) Most studies looking at combination approaches show conflicting results. 

This is because those doing the studies made several key mistakes!! a) they dosed by the TSH, which leaves patients underdosed, b) they had no clue about the problem of inadequate levels of iron or cortisol, either which will leave a patient hypothyroid! Learn from patients!

12) The study’s authors said in a news release that it showed DTE may be a good alternative therapy for a limited number of patients. Harvard’s Dr. Garber says there may be certain subsets who are genetically programmed to respond to such combination therapies. 

That’s like saying a “limited number” of human beings and only those “who are genetically programmed” will do well with a healthy thyroid (NDT gives the exact same hormones as a healthy thyroid!! T4, T3, T2, T1 and calcitonin).

13) Dr. Garber, like many endocrinologists, uses T4 medications with the vast majority of his patients. Occasionally he’ll also use conservative doses of a synthetic T3 drug, but he virtually never prescribes the animal-derived form, he says, because of complications that could arise for women trying to get pregnant or in early pregnancy, as well as individuals with heart disease.  

And this is why most thyroid patients, when they report about their doctor experiences, find Endocrinologists to be the worst doctor they ever went to, using descriptive words such as arrogant, close-minded, blind. And by the way, even some heart surgeons know that T3 SUPPORTS healthy heart function, not hurts it! See the Medical Research page on STTM which supports what we already know by our experiences!

See the actual Wall Street Journal article here.

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* Did you know that the original and revised Stop the Thyroid Madness book is in four languages?? English, Spanish, German and Swedish. Wooo hoooo!!  And now, there’s a STTM II book with each chapter written by medical practitioners! 

* The STTM Facebook page is very active and informative about successful thyroid patient treatment! Come join us! Discussion groups listed on the Talk to Others page.