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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This entry was posted on Friday, January 1st, 2010 and is filed under hypothyroidism. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
trisha said:
Jan 01, 10 at 6:25 pmi did not know she was undercover– she touched my life! i have a special place in my heart for amy. i was so excited to read this…she was a God send for me. i have learned so much from her and i met her on the forum she mentioned above– i kept telling her she was incredibly smart and knowledgeable about this disease and she should be a doctor! . i don’t go there often anymore but when i do i see her on there doing what she does best, encouraging people to THINK. although i have never met her i count her as a friend. i am on this journey too and am grateful for her advice and time she took to explain things to me that i never knew existed. i feel challenged by the above post , i walked away but she is right helping more people to SEE what is going on in these forums may change and create a huge wave of less ignorant doctors and people towards this thyroid maddness. she will be seeing me on there more often now! good job amy!
Alana said:
Jan 01, 10 at 8:28 pmBless you Amy! I’m still new to all of this so I can’t say if I have seen you yet in any forums or not (I possibly have) but it doesn’t matter to me if I have of if I haven’t. It’s people like you and Janie and so many others who are providing people, like me, with the information they require to find the confidence they need to make the most amazing positive changes in their quality of life and for that I, and so many others (I am sure) are so very, very grateful. (Words can not express!).
I only discovered Stop The Thyroid Madness in November 09 so I am still in the ‘eye’s bugging out of the head’ and the ‘wanting to run out into the middle of nowhere and scream and scream and scream’ stage with all of the information I am finding about this on the internet and in forums. I quite happily took my 100mcg of synthetic thyroxine a day and accepted that my lingering hypothyroid symptoms were all related to other things, mainly ‘normal daily stresses’ and depression which I never felt I had. Nevertheless, these diagnosis rattled my self esteem and this mixed with bad thyroid symptoms stopped me doing things I would have liked to have done in the last 10 years of my life (ie making good use of my Bachelor of Applied Science Majoring in Ecology which I later discovered I achieved somehow whilst withstanding debilitating symptoms of undiagnosed hypothyroidism, if not hashimoto’s disease — were BOTH antibodies ever checked? I continue to wonder – my endocrinologist told me when I was finally diagnosed that I had probably had it since high school).
The information I have discovered on STTM and in other facebook groups (many of whom don’t seem to know anything about STTM! I am trying to spread the word as best I can) and forums has resulted in my traveling across the globe to my home country, Australia, for treatment due to a major adverse reaction (including allergic symptoms in my lips, mouth and eyes) to the thyroid medication I was taking whilst living in Denmark. My doctor would not take me off this medication and change me to another or refer me to someone who could treat me with natural desiccated thyroid medication, due to the fact that my TSH was normal. I was diagnosed as a hypochondriac (yes, these were my danish doctors words) and with depression. I am currently trying to find a doctor who will support the recommendations for testing and treatment made by STTM here in Aus (it will be done!).
The point of my big spiel (I do apologize, I try to keep it short, never seems to work), without the information provided and the personal help given by of people like you, Amy, and Janie I would still be happily popping my 100mcg of synthetic thyroxine daily wondering why my symptoms were getting worse and worse over the years and being told I am normal, just depressed… a hypochondriac etc etc. NO MORE!
I am trying to spread the word as best I can (which will hopefully increase exponentially as I am treated properly and recover from this) and I agree… the more people that know, the more chance there is for change. WE can fight for our rights ok once we know this information but what about all of the elderly people suffering (possibly like my Grandmother and her sister) who don’t have the strength to go against the will of their doctor or change doctors and travel for miles to see a doctor who will take this seriously?
The way thyroid problems are diagnosed and treated NEEDS to change and I do believe this approach of spreading the word will work and that doing so can be very hard work so thank you so very much for all you do (words can not express)and for helping make this happen!
Andrea said:
Jan 02, 10 at 6:54 amDoes anybody know if CVS and the other chain drug stores be getting the desicrated thyroid medication soon? I was on Medco’s plan but now have been switched to CVS. Thank you for your help.
Barbara said:
Jan 02, 10 at 7:33 amBless you for your patience! This is where I normally throw up my hands. A lesson learned.
Brenda said:
Jan 05, 10 at 11:05 amTo answer Andrea’s question: Walgreen’s has been getting 60mg Armour in limited supplies. For a while, I felt like a begger hanging out at Walgreen’s. Last month I received my first shipment of Erfa from Canada (thanks to this site for sharing info. about Erfa). I am mixing it with my left-over Armour and have been very happy with it. It really makes a noticeable difference to take it sub-lingually. I also take my liquid Thyadine (iodine) at the same time (Lugal’s is on order; thought I’d give it a try). Also my newest natural DOC has told me that his compounding pharmacy has NO shortages of dessicated thyroid. Check your local compounding pharmacies and ask them which DOCs are their best customers. That’s how I am finding my DOC sources. My energy levels are up and I am able to hit the gym each night after a 10 hour work-day. That’s the way it should be!
By the way, I quit ordering dessicated thyroid meds through my insurance company. My last Armour refill was only $9/month out-of-pocket. Erfa is much more expensive due to demand. I can’t afford to wait and deal with insurance companies.
Alexia said:
Jan 05, 10 at 5:46 pmI just ordered Erfa Thyroid. I hope it is as good as my compounded thyroid and I wish Westhroid will have 30mg pills soon
Leigh said:
Jan 05, 10 at 10:49 pmAndrea, I don’t know what State you are in, but I’m in NYC and yes, CVS does have Nature-throid! It’s thanks to CVS I’ve made it through the shortage at all, the back-supply on their shelf (though truthfully, I’ve had a really rough time switching from sublingual Armour). Best of luck!
denise king said:
Jan 07, 10 at 12:15 pmwhere does one get some stock in the uk please or is it all imported?
D King
(from janie: it’s mostly imported)
MercolaFan said:
Jan 07, 10 at 1:22 pmThanks to this amazing site, I am now going to switch my medical doctor. The current thyroid situation is truly madness in America. My mom lived without a thyroid gland for 10 years and has been on Levothyroxine T4 only and had major symptoms throughout these gruesome years (severe back aches, headaches, osteoporosis, fatigue, VERTIGO, freq. menstration..too much to list). I can only imagine what Amy went through for 20 years! After educating myself about thyroid issues, actually, thanks entirely to this gem of a site, I mustered up some courage and went to the doc the other day with mom to ask for NatureThyroid or Westhroid but he wouldn’t prescribe dessicated thyroid meds because he was either uninformed or had ‘deep-pocket’ ties to pharma corps. My heart plunged when he said “I only prescribe T4 meds because T3 Triiodothyronine is not useful…wtf. I then told him T3 is the active form of hormone while T4 is only the storage precursor form. He didn’t agree…blasphemy! I don’t see how a person w/o a thyroid gland would be able to sufficiently convert T4 into T3 much less maintaining equlibrium. He gave us the usual “your TSH levels are fine, blood levels are good, just keep taking Levothyroxine and Tylenol” talk.. On the contrary, I believe my mother’s adrenal glands are on the brink of mutiny due to over-stimulation of TSH (Hypothyroidism) being without a thyroid, & an immediate Cortisol injection is needed to keep her sanity. Well I won’t be going to the same doc anymore and we all know why. The medical establishment on the majority has failed. Thyroidmadness.com will be treasured by me as it has already empowered me with a sharper perspective. Thank you for sharing your story Amy McMullen.