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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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How are YOU doing with the current desiccated thyroid shortages?

Pills Spilled Shortages

(This post garnered a lot of attention, up to FIFTY comments just a few hours after it went up. People are very interested in sharing their experiences in coping with the shortages! See below and add your own.)

This year will go down in history as shockingly miserable for enlightened thyroid patients on natural desiccated thyroid.

First came a reformulation in the most popular brand–Armour by Forest Labs. Patients worldwide in groups and forums reported a serious return of their hypothyroid symptoms on this product. A huge disappointment.

Second came the production shutdown of the two generic makers of desiccated thyroid: Time Caps Labs and Major Pharmaceuticals. It’s the first step in the FDA’s compliance plan to corral all grandfathered-in drugs (drugs already in existence when the the FDA was created in 1938) and make them each prove the efficacy and safety of their medication via very expensive clinical trials.  i.e. over 110 years of safe and effective use of desiccated thyroid is not enough for the FDA?? We are still waiting to see the outcome of that plan with RLC  and Forest Labs.–the two who were actually in existence before 1938.

Third came demand being greater than supply and shortages. Because of informative patient websites like Stop the Thyroid Madness,  Sheila’s TPA-UK, Lyn’s ThyroidUK, Stephanie’s Natural Thyroid Choices, some areas of about.com (and other good websites I don’t mean to miss here), plus many fine patient forums and groups,  patients found out why they had continuing symptoms on T4 thyroxine, and demand for natural desiccated thyroid grew exponentially.

STTM then created a list of options for all thyroid patients until the shortages resolved themselves, and also created CDT (Coalition for Desiccated Thyroid) where patients could discuss alternatives in a supportive and factual atmosphere.

And we’ve seen some interesting experiences and comments:

The new Armour: One grain tabs started to appear on some pharmacy shelves the past month.  Other pharmacies have still been waiting.  Many patients appear to have switched to other alternatives, though. One gal still on it feels she is finding success by adding T3 to the amount of new Armour she is on.  Time will tell if patients can ever find success with the newly formulated Armour, and most feel it’s a huge loss.

Naturethroid and Westhroid: Patients reporting on their switch to either of RLC Lab’s two identical products report doing well, having to raise it slightly or lower it slightly, or just not liking them at all. Others have had a hard time finding it on their pharmacy shelves, but have been seeing some appear in the last few weeks.

Erfa’s Thyroid from Canada: When it became clear that the FDA was allowing this excellent product to be shipped to patients, many switched and had their prescriptions faxed to a Canadian pharmacy. Prices at many of those pharmacy websites were doubled after prescriptions started to come in from the US. Most patient who stuck with it seem to love it, reporting you can do it sublingually, as well. A few haven’t been impressed, but were finding their former success by raising it.

Compounded desiccated thyroid: In spite of being a more expensive option, some patients found success with this. Others learned they preferred the filler to be Acidophiles.  If not the latter, Microcrystalline Cellulose was preferred over Methyl Cellulose–the latter which appeared to lessen the effectiveness of the compounded thyroid.

Synthetic T4 and Synthetic T3: some patients switched back to the synthetic combination, but many report that it hasn’t been as effective as desiccated thyroid was.

Other options: Patients moved to OTC products like Nutri-Meds, etc, which can be much weaker. Others sought desiccated thyroid from other countries and have found success.

So I’d like to hear from all of you.   Did you go back to synthetic T4?  What desiccated thyroid did you switch to? What worked and why? What didn’t work for you and why?  What product do you hope to switch to once you run out of your current meds?

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FDA’s Safe Use Initiative–think they will listen to our cries about T4-only meds?

EarplugsAs a thyroid patient who was profoundly harmed by the use of Synthroid and Levoxyl in the treatment of my hypothyroidism, and as an activist who sees this same harmful truth with potentially millions of other patients, I find this recent news interesting.

But you gotta wonder if they will be wearing noise reduction headsets and ear plugs…or not…when it comes to the scandal of synthetic T4-only medications.  Will they?

Just today, the U.S. Department of Health and Human Services and the Food and Drug Administration (FDA) announced the Safe Use Initiative, “a program aimed at reducing the likelihood of preventable harm from medication use”.

Statements I gleaned from this initiative include:

1. Today, tens of millions of people in the United States depend on prescription and over‐the‐counter (OTC) medications to sustain their health–as many as 3 billion prescriptions are written annually. Too many people, however, suffer unnecessary injuries, even death, as a result of preventable medication errors or misuse.

2. Although FDA and many other stakeholders have been working to improve how the healthcare system manages medication risks in the United States, it is widely recognized that more needs to be done to protect the public from preventable harm from medication use.

3. Medications offer great benefit, but they come with risks. Whenever medications are not used optimally, risks of harm can increase significantly.

4. FDA proposes to identify, using a transparent and collaborative process, specific candidate cases (e.g., drugs, drug classes, and/or therapeutic situations) that are associated with significant amounts of preventable harm.

This initiative is actually far broader than what I gleaned above, and also involves self-abuse, exposure of dangerous medications to children, dire side effects, and more. Five areas are also specifically targeted:  Consumer medication information (CMI), Medication dosing devices, Acetaminophen toxicity, Alcohol-based surgical preps, and Medications in vials. You can read more in the fact sheet.

But if the FDA is going to do their job with this initiative, or do their job overall, you have to wonder if they will listen to and include the problems associated with being treated with a T4-only medication as experienced by millions of patients worldwide. Continuing symptoms of hypothyroidism while on this inadequate treatment is widespread and damaging for many, causing hands reaching deep in pockets to pay for numerous doctors appointments, besides antidepressants, anti-anxiety meds, blood pressure meds, statins, cortisol meds for adrenal fatigue, and other medications which we would have never needed, and would have been preventable, if we had been on natural desiccated thyroid like Naturethroid or Westhroid in the first place.

Many patients on thyroxine, T4-only medications will also report actual hospital visits due to the side effects of a poor treatment.

In other words, thyroxine aka levothyroxine aka T4 treatment has been an unsafe and harmful treatment, causing millions to suffer unnecessary injuries and side effects for over 50 years of its useless and popular use.  It fits the Safe Use Initiative. Or at the very least, it calls for the FDA to listen to patient experience with this lousy choice to treat hypothyroidism.

Listen to us, FDA. Listen and be wise.

P.S. See the blog post below about a genetic reason why so many do lousy on T4.

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Is there a genetic reason many of us do lousy on T4?

deiodinase2Last May, a very interesting article appeared in the May 2009 issue of the Journal of Clinical Endocrinology and Metabolism, titled For Some, L-Thyroxine Replacement Might Not Be Enough: A Genetic Rationale and presented by Endocrinologists in Bristol in the UK. It’s accompanied with an editorial by Endocrinologists Brian W. Kim and Antonio C. Bianco.

This is the same article referred to by Endocrinologist Dr. Gary Pepper on the last Thyroid Patient Community Call on Talkshoe.

Basically, the article states that a genetic variation in the enzyme that converts T4 to T3, deiodinase D2 (also called Type 2 Deiodinase, or 5′-Deiodinase), may be responsible for why so many thyroid patients don’t do well on Synthroid, Levoxyl, levothyroxine, etc, and in turn, do so much better on natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or the combined synthetic T4 and synthetic T3 (Cytomel).

In other words, where some may have a strongly functioning deiodinase D2 enzyme which converts T4 to the active T3 well, others may have a modified deiodinase D2 enzyme, causing less optimal conversion.

In the Editorial, the two Endos Kim and Bianco explain the reality of “polymorphism”–a condition in nature in which changes or variations occur, and in one patient from another, a change in the DNA.  As related to conversion of T4 to T3,  some thyroid patients have a less effective deiodinase D2 enzyme in the conversion of T4 to T3.  Specifically, there is a common variant of the gene, threonine (Thr) 92 alanine (Ala), and it results in decreased D2 enzymatic activity.

The study proposes that this alteration from polymorphism occurs in 16% of those studied, and concludes that the majority don’t have this problem, and thus, “most do fine on T4-only medications”. But 16% do have this problem and need the combined therapy of T4 with T3.

Bristol was also mentioning this reality in 2004 here, even if they thought it was as low as 5%.

As Dr. Pepper hinted, this study could do wonders to open the eyes of Endocrinologists about the use of desiccated thyroid, or at the very least, about combined hypothyroid treatment with synthetic T3 added to synthetic T4.  And I’m glad for that when so many patients have found Endocrinologists to be narrow-mindedly stuck on Synthroid or other T4-only thyroxine products.

Of course, informed thyroid patients know this is only a baby step in the right direction, even if a good one! So we’ll rejoice for this study, and watch for more progress from the medical community and Endocrinology in general. For example, saying that “most do fine on T4” simply because they have may a non-variation might be proven wrong as physicians take the time to really look at those “fine” patients, especially as they age and symptoms of an inferior treatment do pop up. And though the combination of synthetic T3 with synthetic T4 definitely gives better results, thyroid patients who then moved to desiccated thyroid with it’s T4, T3, T2, T1 and calcitonin report even better results and clinical presentation!  We’ve also learned that the TSH lab test absolutely sucks when it comes to diagnosis and treatment.  Read TSH Why It’s Useless, or see even more detail in Chapter Four of the STTM book, titled Thyroid Stimulating Hooey.

And finally: do thyroid patients really believe that problems with T4-only treatment is simply due to a genetic abnormality or variation? Maybe. But isn’t it funny that a healthy human thyroid does NOT depend solely on conversion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the supplement Selenium helps with conversion, by the way, but has never stopped our first-hand knowledge that desiccated thyroid rocks!

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What the recent Medco scandal is actually telling us–i.e. there’s more to this story

medcoI have been watching with interest the past week about the justified ire of patients being expressed all over patient groups in the internet. And in case you’ve been too busy with school starting or end-of-summer activities, it involves one of the nation’s largest mail order pharmacies as well as the largest Pharmacy Benefits Manager (PBM):  Medco.

In a statement you can read right on their website, they state:

1)  there is a “nationwide shortage of porcine-derived desiccated thyroid”
2)  they are “uncertain about continued availability.”
3)  “ask your doctor if a synthetic thyroid medication, such as levothyroxine is right for you.”

In Medco’s direct message to doctors, they state;

1)  desiccated thyroid does not have the U.S. Food and Drug Administration (FDA)  Federal Drug approval”
2)  the FDA  “may remove any remaining unapproved products from the market.”
3)  the shortage is due to this “uncertainty”.
4) “the American Association of Clinical Endocrinologist recommends levothyroxine over desicccated thyroid, liotrix, combination of thyroid hormone, or triiodothyronine (T3) for the treatment of hypothyroidism.”

Clarification on their statements

If you are just now finding out about this,  do note the following:

1) There is not a nationwide shortage of all desiccated thyroid. There is a shortage of Armour because of its 2009 reformulation. (See my blog posts below about problems with the newly formulated Armour.)
2) Naturethroid by RLC Labs continues to be available. They are working hard to keep up.  See my post on Naturethroid.
3) Desiccated thyroid was around long before the establishment of the FDA, so they are grandfathered in and still work with the FDA guidelines.
4) There has been no statements by the FDA that they are removing desiccated thyroid.

An even more important revelation in this entire Medco scandal

There is actually an underlying message in the entire Medco fiasco that you should find even MORE disturbing: the continued  promotion of T4, aka levothroxine, as an adequate treatment of hypothyroidism.  And this is not just a faux pas of Medco, it continues to be the ignorant opinion of far too many doctors, medical schools and medical boards. All you have to do is look at what has happened in the UK with the Royal College of Physicians to see the idiocy abounding.

Over 100 years ago, desiccated thyroid was found to be an excellent treatment for hypothyroidism.  I give precise details about the first use of desiccated thyroid in Chapter 2 in the Stop the Thyroid Madness book. It worked!

But in the early 1960’s, the tide turned thanks to a batch of desiccated thyroid that turned out not to be what it said it was.  This is documented in the 1970 Pharmacological Basis of Therapeutics.  And pharmaceuticals, especially  Knoll Pharmaceuticals who first tableted levothyroxine aka Synthroid in 1955,  jumped to promote T4-only as a “new and modern medication”.  (See page 41 and 42 in the STTM book).  And doctors and medical schools fell for it hook, line and sinker.

And to this day, levothyroxine continues to be purported as an acceptable and logical treatment choice for hypothyroidism.  But patients all over the world beg to differ.  T4 medications like Synthroid, Levoxyl, Eltroxin, Oroxine and others simply leave all patients with their own unique amount and degree of lingering hypothyroid symptoms, no matter how high you raise it.

I also find it hugely disturbing to refer to AACE (American Association of  Clinical Endocrinologists) as if they are the grand poopah of knowing what’s right for thyroid patients. They are NOT.  Millions of thyroid patients who have switched to desiccated thyroid, T3, or a combo of T4 and T3 will tell them hands-down that they have gotten FAR better results, and most especially with desiccated thyroid like the “old” Armour, and now Naturethroid.

Visiting numerous thyroid patient groups will reveal how patients feel about Endocrinologists they have visited throughout the years.  Their experiences are far from flattering. In other words, with a few exceptions, thyroid patients are NOT impressed with Endo’s.

Medco’s statements are definitely a concern for patients and range from presumptous to unfactual.  But those statements only represent a far wider problem around the world in the medical community.  Clinical presentation and wisdom has been thrown out the window by doctors.  So patients have to continue spreading the word about the far superior treatment of desiccated thyroid, and their problematic experience with T4.

Want to be informed of these posts so YOU can be informed? Curious what’s on Janie’s mind? Use the Notifications on the left at the bottom of the links.

***50% off sale!! All STTM t-shirts are now on sale. I love sales. Not only do they help support this site, they are a great way to spread the word. Go here.   Did you know that Laughing Grape Publishing will send a STTM book directly to your doctor?

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