Skip to content

Tag: american association of clinical endocrinologist

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,

Screen Shot 2013-12-11 at 11.37.51 AM

39 replies

Confessions of an Undercover Thyroid Advocate

The following guest blog post is written by Amy McMullen, who had undiagnosed & symptomatic hypothyroidism for 20 years due to the sole use of the TSH, resulting in multiple health problems. She is now treating per the guidelines on STTM including T3 for thyroid hormone resistance, adrenal support, and desiccated thyroid.

I found her story below as an undercover advocate fascinating,  and think Amy is caring and committed,  in spite of severe restrictions! Bless you, Amy.

I spend an inordinate amount of time these days contributing to a well-known online thyroid disorders forum I’ll call “Thyroid Health Forum” (not its real name).

It’s a tricky forum with draconian rules: they don’t allow you to post any links to resources, talk about where you get your online labs done, include quotes from studies, or post any names of thyroid advocates. You can’t use a username you’ve used on any other forums and you can’t mention using their personal messaging system.

I’ve received a few “infractions” from the ever-vigilant board “administrators” and “moderators” (never could color inside the lines, I guess) and have been warned to never, under any circumstances, use the words “Stop the Thyroid Madness” or any references to this website or book in my posts.

At more than one point I was ready to walk away and just give up on it.  How can you share your experiences when there were so many rules that seemed designed to inhibit a free flow of information, to the point of not being allowed to mention the title of a good book by name or type in the word Google?

But I would read the following posts submitted by desperate people and this would keep me coming back to try, somehow, to help:

  • “Hi, my doctor says my labs are all normal but I’ve got so many symptoms, I can hardly function…”
  • “My doctor says that free T3 and free T4 testing is not useful, that my TSH is normal and that unless my TSH is high he won’t order any antibody tests…”
  • “My doctor says that my TSH is too low and wants me to cut back on my thyroid hormones, but I know I will start feeling bad if I do this… Help!”
  • “I am taking Synthroid but I feel terrible and my hair is falling out and now my doc wants me to take an antidepressant…”

You see, I was in this very same boat for far too many years. About 20 years back I started noticing symptoms:  fatigue, depression, menstrual irregularities, and dizzy spells. I went to see my doc who did the usual TSH test and when it came back “normal”, prescribed antidepressants. The antidepressants did help, but my menstrual problems intensified and other symptoms increased until I finally underwent a hysterectomy for dysfunctional uterine bleeding. Shortly thereafter, I collapsed with heart irregularities and autonomic nervous system dysfunction in the fall of 2006.

I went to over 10 different specialists spending thousands of dollars for medical bills with no real answers–just a lot of shrugged shoulders and a fibromyalgia diagnosis.

It wasn’t until my mother was hospitalized and routine blood testing came back with a TSH of over 6 that I looked again at my own thyroid. My TSH was never above 3. I had one free T4 test done following my initial collapse but, again, all tests were flagged “normal” and thyroid was passed over once again.

But a search about TSH lab ranges led me to Mary Shomon’s About.com articles, and while she seemed to be stuck on the idea that 3 was an acceptable number for the top of range for TSH, based entirely on the American Association of Clinical Endocrinologists recommendations, I finally found the Stop the Thyroid Madness site and learned otherwise.

It was here that I learned about other testing like free T3, free T4, thyroid antibodies, vitamin and ferritin levels and, very importantly, that the TSH should be the LAST test done for diagnosing hypothyroidism instead of the ONLY test. I finally caught on to how the medical establishment has failed miserably to adequately diagnose and treat hypothyroidism. I felt both incredibly empowered and very, very angry.

I quickly delved into the thyroid forums to share what I’d learned and to learn from others. The first forum I found was the aforementioned  “Thyroid Health Forum”, and since this is one of the best-known, it is where many of the newbies, like me, find themselves. There were both natural and synthetic hormone proponents on the board and the advice ranged from very good to quite bad. I soon found there were better forums like Realthyroidhelp and the natural thyroid hormone Yahoo groups that had really smart people who were happy to share resources and information that was truly useful. I spent a lot of time on these and learned a great deal.

But for some reason I couldn’t seem to leave the “Thyroid Health Forum”. The people who stumbled on there seemed so lost and I felt compelled to impart what I had learned to them. I would offer alternatives to the synthetics and explain why natural desiccated thyroid (NDT) was a superior treatment option and, more importantly, that they did have an option for their treatment, despite what their doctor told them. I’d relay what I had learned from other boards about access to NDT during the shortages.

When I figured out I had adrenal fatigue and later thyroid hormone resistance as a result of being undiagnosed for so long, I started relaying information about these issues to the many who were having difficulties getting optimized on their hormone replacement therapy. I found it to be both rewarding and enormously educating for myself as I would spend time researching questions that were asked about supplements, lab tests, and studies. I was not allowed to post links so had to summarize things I had learned and this taught me even more. The main messages I pushed were (and are):  get the right labs done, learn how to interpret them correctly, be your own advocate, know your treatment options, and don’t implicitly trust doctors.

I will continue to contribute what I’ve learned to the “Thyroid Health Forum”. So far I’ve managed to fly under the radar and play, however grudgingly, by their rules. I figure if I can get just one or two people to question the present thyroid clinical guidelines, as written by our friends at big pharma, I’ll be more than satisfied. I actually believe that by getting good information out there to as many sufferers as possible, we may create a groundswell of people who will no longer accept being dismissed as depressed complainers by their healthcare providers. And this is one more way we can help enact real change to the currently abysmal medical practice of thyroid diagnosis and treatment. Well worth it in my book!

*******************************

Latest news from RLC: Shipments of Naturethroid are beginning Monday, January 4th and the first two weeks with backorders going out ASAP.  Medco should have some by the end of January. Their Patient Information Line: Naturethroid/Westhroid: 877-600-4752

Thyroid  patient guest posts can be read about here: /writing-a-guest-blog-post-on-sttm/

Want to honor someone who has helped you?? See the blog post below and thank someone.

NOTE: if you were receiving email notifications about these posts,  the company doing them is out of business. Instead, use an RSS Feed.

9 replies