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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!

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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.

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9 replies

The unsung heroes of this thyroid patient movement

shakinghands1Let me tell you, there are a LOT of individuals–those I know and those I don’t–who give their blood, sweat and tears to help thyroid patients with feedback and information to help them feel better in their treatment, and with no notoriety that I or a few others get.   i.e they do what they do without a huge or far-reaching website like STTM, or a well-known blog, or a popular book, or other ways a few of us get well-known.

And in my mind, these individuals deserve praise and recognition. They are just as important in their direct one-on-one influence and helpfulness as those of us who gained public recognition.

There are many who voluntarily helped others in the last few years who aren’t as active anymore, but still deserve praise.

And there are many other individuals who own, moderate, or give helpful feedback to patients on forums and yahoo groups I could mention, but I don’t know their names or am just drawing a distracted holiday blank.  I also noticed several thyroid cancer groups.

So, if you want to recognize an individual who has helped you and others but is less publicly well known, use the Comments below and give 1) their name, 2) what group or forum if applicable, and 3) specifically how they helped you on your path in finding a much better thyroid treatment protocol and good health.

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Getting the facts straight about Dr. Sydney Wolfe, and what YOU can do.

armourbottleWith the recent blog post by health writer Mary Shomon concerning Dr. Sidney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Management Advisory Committee, there has been much brooha and fear-mongering on thyroid patient groups.

Why? Well look at it this way. This is a man of stature. He is an MD, an Adjunct Professor of Medicine, the director of Public Citizen’s health research group which promotes drug safety and public health, and editor of the newsletter Worst Pills, Best Pills, and since August of  ’08, a member of the Drug Safety Committee.  He also has a resume a mile long.

Yet in spite of his seemingly caring activism for our health and well-being, and his immense experience and education, he is clearly and completely off-base about Armour and other desiccated thyroid prescription drugs.

For example, as as editor of the Worst Pills, Best Pills newsletter,  Wolfe declared Armour desiccated thyroid as a “Do Not Use” product because it is not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available”. (Gee, funny how our experiences are completely otherwise….)

Then in the May 2003 issue (of which you have to have a paid prescription to read), he wrote an article titled  “Do Not Use! Natural or Desiccated Thyroid (ARMOUR THYROID) For Thyroid Hormone Replacement Therapy.” In that article, the clueless Wolfe stated that he supported The American Thyroid Association’s statement “There is no evidence that desiccated thyroid, a biological preparation, has any advantage over synthetic thyroxine.” (I guess millions of us and our improved heartrate, stamina, cholesterol, depression and more…aren’t evidence?)

He then proposes that Armour is mostly prescribed for weight loss, is a niche market for the unscrupulous, and concludes with “if you are offered natural thyroid hormone replacement treatment for any reason, this is a red flag and you should get a second opinion.” In a letter to consumers, Wolfe and Public Citizen state that that T3 is only needed from conversion and is predictably found from conversion, that the T2 and T1 also found in desiccated thyroid has essentially no activity, that desiccated thyroid is an unpredictable mixture, that is has no predictable biological activity…plus so many more complete and total inaccuracies based on “intellectual head chatter” not on observation and experience.

Thud.

Mary Shomon, in 2003, did a bang-up job trying to communicate with Wolfe, Worst Pills, Best Pills, and Public Citizen about the inaccuracies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chapters 1 and 2 in the STTM book which are enlightening those reading it all!

So we are left wondering, six years later, what his four-year appointment to this committee will mean. But let’s make a few things quite clear to contrast some of the fears going on and expressed on thyroid groups:

1) Armour is not being banned.
2) Wolfe is one of a current 9 members of this committee. Wolfe is not “the committee”.
3) Wolfe and seven others currently have voting rights. He is the only “Consumer Representative”.
4) There are still six more vacancies.
5) The committee is NOT the power. They simply make recommendations. And historically, the FDA can be slow to act on their recommendations, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medication like desiccated thyroid).

So what can you do? I challenge you to follow and act on the below, which puts our energies into communication, not feeding the ego and power of a misguided man with our overtly expressed fears as if they have actually come to pass :

1) Remember 1-5 above. Armour is fully available. Keep the facts straight, and fear-mongering down.

2) STTM has a powerful and growing page of testimonies of those who switched to desiccated thyroid.  Are you in there? If not, you need to be. This website currently has a huge audience. It’s noticed by doctors all over the world, as is the STTM book, which is YOUR book of YOUR experiences,  which is also being ordered by doctors. Use the Contact Me form at the bottom of that page.

3) Tell your experience with Synthroid or other thyroxine medications at the following websites:  www.rateadrug.com,  www.drugs.com,  www.askapatient.com They don’t include any of the desiccated thyroid meds yet, but you can tell of the negative experiences with all the T4-only drugs, including adrenal fatigue if you fell into that, and all your lingering thyroid symptoms.  The above links will take you to their Synthroid page–you can search for the other T4 meds.  Remember to mention Armour or other desiccated thyroid meds and how they have helped you!! Update: thyroid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only experience to MedWatch, the FDA’s  program for reporting problems.  You will see an Online Reporting Form to download. Don’t fail to mention which problems were removed or greatly improved when you switched to Armour, or the fact that you now have to deal with adrenal fatigue thanks to the inadequacy of T4-only treatment. You can also call 1-800-FDA-1088, but remember: your call is not to draw attention to Wolfe’s opinions! It’s to draw attention to how lousy a treatment T4 is as compared to how much better Armour has been.

5) Go to my article titled Synthroid Sucks: the Rallying Cry of Thyroid Patients vs. Clueless Doctors and comment on this article, including mentioning what Armour, Naturethroid or other desiccated thyroid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask questions and YOU can answer, mentioning YOUR experience and how much better desiccated thyroid has been. Clicking on that will take you to the Synthroid patient questions. Answer them. Be careful with links–they may not catch them at first, but will remove them if they do.  You can mention website names, tho, like Stop the Thyroid Madness.

7) Send people here to follow all these steps. Power is in numbers!

8 ) Use the following website to email or write your senators and representatives: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remember this!  Here’s a template letter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and places to write or call, add your comment to this post. Remember,  put your power in communication! LOTS of communication.

P.S. Did you know that the American Thyroid Association, in cooperation with the American Association of Endocrinologists, together support January as “Thyroid Awareness Month”…which is supported through an unrestricted grant from Abbott Laboratories, the makers of Synthroid?? Major UGH.


2 replies