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:
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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]]>And a slew of thyroid patients around the world, as well as a growing body of doctors, would completely disagree with this post.
Namely, a DO explains the problem of patients arriving in doctors offices with “innumerable possible symptoms of hypothyroidism” including “fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others.”
Yet, he bemoans, these patients have a “normal TSH” which is “well within the normal laboratory reference range.” He also refers to their normal free T3 and free T4, and states there is no history to suggest pituitary dysfunction or that the TSH is unreliable.”
He then proceeds to pat himself on the back because he 1) will treat some patients with a high-normal TSH and other clinical features, 2) he will treat to a low-normal TSH of less than 2.0, but like the good-boy-doctor, “still within the normal laboratory reference range” and 3) he will not induce iatrogenic hyperthyroidism, even if symptoms persist. (yikes)
“Iatrogenic hyperthyroidism”?? Since “iatrogenesis” refers to harmful medical procedures, he’s probably referring to a TSH below the range, which in his mind, equates to hyperthyroidism.
***Then comes the observation that has made many thyroid patients shiver, since so many doctors have said it: because he feels that adding T3 to T4 has more negative results than positive, he explains to his patients “that there may be causes of their symptoms besides the thyroid.”
THUD.
So here is my 6-point response to any doctor who might share these beliefs:
1) There’s hardly a thyroid patient around who hasn’t had a so-called “normal” TSH in spite of clear and obvious hypothyroidism. The TSH lab test frequently lags behind what is reality in the body, and has been doing so since it’s creation in the early 1970’s (see Chapter 4 in the Stop the Thyroid Madness book for history).
2) Having a “normal” free T3 and free T4 means nothing. It’s “where” the result falls in that range that means something. i.e. patients all around the world are noticing that having a free T3 mid-range or lower in the presence of hypothyroid symptoms is usually a BINGO lab result pointing to hypothyroidism.
3) Exactly because doctors tend to dismiss clear hypothyroid symptoms as “something else” thanks to a lousy TSH reference range, a burgeoning number of thyroid patients are falling into adrenal fatigue with its low cortisol, which serves to mess them up even more.
4) A huge body of thyroid patients who are on desiccated thyroid hormones (aka Armour, Naturethroid, etc), and who finally have a complete removal of symptoms with a normal temperature and heartrate, also have a suppressed TSH lab result, and not one iota of “iatrogenic hyperthyroidism.”
5) When it appears that adding T3 to T4 is having negative effects, the problem is most likely adrenal fatigue that needs correction, and/or low ferritin, NOT deciding that the symptoms must be from another cause or T3 doesn’t work.
6) “Fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others” may be shared in other conditions, but you are most likely missing CLEAR symptoms of hypothyroidism, both in the undiagnosed patient with a so-called normal TSH, or with a patient treated with the lousy thyroxine, which leaves most everyone with continuing hypothyroid symptoms.
“I’m sorry. It IS your thyroid” is exactly what patients need to hear.
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And Diane said to me “Somehow the true message needs to get into the main stream.”
Boink! That just hit me squarely between the eyes! Sure, I’ve been saying the same in a different way for years–that our message needs to get out. But when Diane mentioned the “mainstream”, it hit me.
Here we are, victims of a medical scandal which has been going on for 50 years, and which has effected HUNDREDS OF MILLIONS all that time. Some of those victims are dead; and many more are still alive, with new victims happening DAILY. Yet, the “mainstream media” has never taken the time or interest to report on this. HUHHH??
Wikipedia defines the mainstream media as the section of the media specifically envisioned and designed to reach a very large audience, and that might include television, radio, newspapers and magazines. Yet, what do you see on any of those mediums? You see the regurgitation of the old-boy, Pollyanna methods of hypothyroid diagnosis and treatment–the use of the TSH and total T4, plus T4-only meds like Synthroid, Levoxyl, Levothyroxine, et al. And if there is mention of desiccated thyroid, it’s bare. YAWN.
Some pundants feel that there is a form of literary censorship going on in the main media…i.e. if it’s not sensational, forget it. Others will cite bias and manipulation by those that report, especially in the political arena.
But what I lean to believe is that there’s a monkey-see, monkey-do mentality in the media. Namely, the mainstream media lazily conforms itself to the loudest, longest or most financially-influential voice. And who’s had that voice in the thyroid treatment arena?? The money-grubbing pharmaceuticals, who thrust billions of dollars into medical schools, besides their bright-eyed reps, to eventually convince every doctor since the early 1960’s that the lousy T4-only medications (Synthroid, Levoxyl, et al), and the dubious TSH lab tests, are from God Almighty.
So, that lie keeps being repeated, ad nauseum, and the TRUTH, which comes from everyday patients all around the world, gets ignored by the mainstream media. Thus, millions out there still sit, miserable or compromised in their day-to-day lives, and on a myriad of other pills to counter the lingering symptoms…because their main contact with the world–the mainstream media–is deaf and dumb–and they have not yet found Stop the Thyroid Madness, and may not for years!
So….what can YOU do?? Contact the mainstream media. SCREAM at the mainstream media. DOG the mainstream media. I have worked hard to put YOUR truth up here and in the book. You can help by spreading that word, one by one, like the Lilliputians who moved the giant.
*To contact ABC, go here.
*To contact MSNBC, go here or email Health@MSNBC.com
*To contact CBS, go here. Use the drop down menu to click on a news program
*To contact Fox News, go here.
*To contact CNN, go here.
*The top 20 Women’s magazines are here.
Want to add more emails or website URL’s for contact? Just add a comment to this post below.
**Patients are reporting that the STTM book is even better than the website! Yeehaw! To order your copy, go to the publishing website here. There are also options to order one for your doctor, and one for Oprah!
]]>And how she is moving on TOTALLY impresses me, and I think all of you reading this should consider this positively assertive and self-advocating strategy.
First, she scoured through her list of doctors on her insurance plan, and found one that looked promising. She called and spoke to his nurse on the phone. She then told us the following: I explained that I use Armour and refuse to change meds; I am VERY involved in my health; I watch my Frees carefully and don’t rely on the TSH at all since the feedback loop is interrupted by meds..etc. With that said, the nurse stated she would check with the doctor.
In other words, my friend Kerry refused to do what all of us have done most of our lives–approach the doctor passively. She clearly outlined who she is, where her intelligence is about her body, and that she expects a partnership, not a demi-god, one-sided dictatorship of what is right and what isn’t right for her health care.
She also stated that if this doctor didn’t come through, her next strategy was to write a letter about her health needs and how she wants to be very involved in her treatment, then fax it to every available doctor on her insurance list in her area and see if she gets someone calling.
MAJOR, HAND-CLAPPING BRAVO, Kerry!!
THAT, friends, is the way each and every thyroid patient should approach their health care: candid as to your beliefs about your treatment, and what you want from the doctor. And eventually, your assertive approach will produce a doctor who is going to be a gem for you! Remember: it’s YOUR body and YOU live in it.
p.s. Without an insurance plan? Pull out the Yellow pages! And don’t hesitate to use parts of this Dear Doctor template letter to help you flesh out and compose your words or letter.
***WANT TO MAKE A FASHION STATEMENT ABOUT YOUR THYROID TREATMENT? Go HERE for a thyroid advocacy t-shirt. I dare you to wear it to your doctors appointment. (But if you don’t, wear it everywhere else. It does attract questions.)
]]>1) expect that the relationship with my doctor will be a TEAM approach to my health care: not just his medical school/continuing education/experience, but also my own important knowledge and wisdom that I have gained (from reading sites like this), plus my subjective experience on my medication. My doctor does not live in my body or experience my symptoms; I do.
2) take the time to find a better doctor if my doctor refuses to respect the knowledge I have gained from reading sites like this, and/or will not listen to my subjective experience in my own body!
3) make my symptoms far more important than ink spots on a piece of paper called lab results, and will not passively allow a doctor to treat me ONLY according to those lab results.
4) give myself important supplements, including, but not limited to: selenium and zinc (helps conversion of T4 to T3), other minerals which may include magnesium, etc., plenty of B-vitamins (which are needed as I improve my thyroid function, besides supporting my adrenals), Vitamin C (also supports my adrenals) and more that I feel are suited for my needs.
5) be open to the fact that if Armour or other desiccated thyroid products don’t seem to be working, I am making one of several mistakes in my use of it, and will identify my mistakes and correct them.
Do you have others as a thyroid patient? Just respond to this post.
]]>For those who haven’t heard, Oprah announced on September 10th during her Good Morning America interview that she “blew her thyroid out”. Now that also sounds suspiciously like she also has adrenal fatigue, but time will tell.
And Oprah will now join the club of an estimated “billions” worldwide with thyroid disease. But even worse, she may also be joining the club of those who for nearly 50 years, have been put on the lousy T4-only medications (Synthroid, Levoxyl, Levothyroxine and others) and who have been terrorized with the TSH lab and it’s dubious and pathetic “normal” range.
Yes Oprah, beginning in the 1960’s, doctors starting putting ALL of us on T4-only meds, and in the early 1970’s, dosing by the TSH lab. And NEITHER have worked. Sure, some will state they felt better. But many will tell you that NOTHING changed. And ALL, to one degree or another, have been left with a variety of hypothyroid symptoms while doctors have been proclaiming that those VERY symptoms had nothing to do with hypothyroid since we were now “adequately” treated.
But we have NEVER been “adequately” treated, Oprah. Doctors became cattle in the chutes of their pharmaceutically-financed medical schools, blindly believing that T4-only meds were working and that the man-made TSH was the gold standard of diagnosis and dosing…and ignoring clinical presentations which showed the opposite.
And when we still complained of symptoms, we have been put on anti-depressants, statins, anti-anxiety meds, and a variety of other pills to bandaid our continuing hypo symptoms.
And we finally fought back Oprah. For the last 7+ years, patients like myself found out that there has always been a MUCH better treatment (desiccated thyroid), MUCH better labs (free T3 and free T4) and much better dosing strategy (by symptom elimination). Our lives have become far better because of what we have learned.
This website represents the knowledge of a large and constantly growing body of patients worldwide, and some wise doctors, which goes totally COUNTER to nearly 50 LOUSY years of pitiful thyroid treatment.
You, Oprah, are a megaphone of influence. And if you can take the time to read this website, you might play a huge role in helping to change MILLIONS of lives. Because right now, the vast majority of the medical community does NOT get this, and is continuing to keep patients SICK and TIRED and/or with continuing hypothyroid symptoms of some kind. And YOU are going to be one, with your own continuing list of symptoms, if you don’t consider what thyroid patients are trying to tell you by nearly 50 years of LIVING it.
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