Six years ago, when I got involved in thyroid patient advocacy by starting the Natural Thyroid Hormone Users group on Yahoo, I did it because I was amazed and shocked what switching to desiccated natural thyroid did for me! There I was, on the brink of applying for Social Security Disability after YEARS of misery & lack of answers, and simply changing to a different thyroid treatment completely turned my life around. I owe some of that change on what I found out on Mary Shomon’s Thyroid group in early 2002.
And it dawned on me: if desiccated thyroid with its T4, T3, T2, T1 and calcitonin did this for ME, what could it do for others?!I A group was NEEDED with a direct focus on desiccated natural thyroid.
And over time, as NTH grew and other fine internet patient groups evolved and grew, other patients were just as amazed at what it was doing for them, as well. This wasn’t coming across at ALL as a treatment only for “some”. It was coming across as a treatment that might just benefit quite a large body on individuals! We also learned by the seat of our collective pants about low ferritin, low cortisol, low B-12, Celiac and gluten intolerance–you name it.
From all the above came the STTM movement: a patient-to-patient compilation of all we have learned–and then the book with even more information. The STTM movement was created because “internet groups” were NOT enough to get the word out about the efficacy of desiccated thyroid, nor were they enough to change the huge and rigid medical establishment. Change had to come from the bottom up–in other words, educate patients, who in turn can take the new information into their doctor’s offices.
But sadly, with the success of patient information about the amazing results of desiccated thyroid treatment has come veiled criticism and overblown misconceptions within our own ranks. And it’s a sad thing to behold!
Namely, we can now read a September 10th internet blog “conversation” by so-called thyroid patient advocates who imply that it is “dogma and narrow-minded” if anyone dares state there just might be a thyroid treatment which JUST MIGHT BE better for most all thyroid patients. IMAGINE the audacity!! I guess it was just as “dogmatic and narrow-minded” when it was first suggested there were better ways to deal with certain health conditions than bloodletting. I can hear it now: “To deny bloodletting is just boxing people in!” “Offering bloodletting as a choice is helping people expand.”
And contrary to the self-righteous tone, condescending misrepresentations, and veiled criticisms towards certain patient groups, this patient movement is not a one size fits all movement. Instead, it’s a “one size JUST MIGHT BE a better alternative” than the other available alternatives, and we strongly encourage that each patient consider finding a doctor to help them give it a try. And, if something about desiccated thyroid isn’t working, we strongly encourage patients to look at particular reasons that can underlie problems.
If you think T4 is working for you, go for it! The same goes for the use of T3 only, or synthetic T4/T3, or certain ratios of T4 and T3. Choice is a blessing we can all respect. Just keep an eye out for depression, rising cholesterol, less stamina than others, adrenal issues and/or a myriad of other continuing hypo symptoms that just might creep up on you as you age on these treatments. Or, consider that we’ve seen many people on these treatments, who, when they switched to desiccated thyroid like Armour, Naturethroid, Westhroid, etc, they reported even better results. (The use of T3-only for high RT3 is a different issue and is where T3-only may be absolutely needed and good. We also respect those who have ethical issues with animal products.)
Finally, I encourage others who consider themselves thyroid patient advocates to TAKE A BIG BREATH and TAKE THE TIME to be in open-minded dialogue with all patients, including me and all of us over here, instead of openly ignoring our existence or deciding what we promote is simply narrow-minded dogma. You might find that direct communication and kindness is a far better method to help thyroid patients instead of the underhanded veiled bashings and misrepresentations within this recent blog conversation.
This entry was posted on Monday, September 15th, 2008 and is filed under Armour, Health Care, Information, Patients, Starting the Site, book. 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.
Tracy said:
Sep 15, 08 at 11:13 amAmen!! I read the article, too, and I was disgusted with the smug attitude these so-called patient advocates have. One doctor actually mocked a commenter because she stated that armour contains T1,2,3,4 and calcitonin. The doctor said that we cannot claim that armour is better because it has more of the right ingredients!!!!! Isn’t that what makes a cake better–if it’s made with sugar instead of salt? The right ingredients DO MATTER!
As someone with no thyroid, I contacted this self proclaimed thyroid advocate. I told her my story and about my cancer. She didn’t bother to send me even a junk mail response. As soon as I comment that T4 meds don’t work, THEN she responds to me, saying “you don’t get it.” Uh, no, sweetie–it’s YOU who is in the dark.
Sorry if I sound a little ticked here, folks, but I am. With “advocates” like that, who needs enemies?
Shawndra said:
Sep 15, 08 at 8:04 pmHi Janie,
I just wanted to say thanks for all of the incredible info on your site. I’m 24 years old, and I was diagnosed with Graves Disease when I was 20. I went through a miserable season of anxiety, depression and chronic fatigue. It pretty much ruined my athletic career. Reading the info on your site has shown me that I probably had a thyroid problem since I was a little girl.
I am now on my second endocrinologist, and I am still being told that if the labs are normal then everything is fine and I just need to eat better. But, now I know that my symptoms are valid and not just in my head. Somehow these doctors have made me feel responsible for my symptoms. The depression/anxiety never left completely, and I am DEAD TIRED all the time. It’s the hardest thing in the world for me to just wake up in the morning.
I’ll spare you any further details, I just wanted to say THANK YOU! I don’t feel crazy anymore, and the madness has definitely got to STOP. I’m going to switch to Armour ASAP.
Again, thank you.
~Shawndra
Colleen Devlin said:
Sep 17, 08 at 1:38 pmI just found your site and I’m really grateful to you for doing what you’re doing. I was diagnosed with Hashi’s 25 years ago, treated with synthroid all these years, and have still experienced the host of ills and symptoms outlined here, and with increasing severity. This past year I’d become convinced I was simply destined to be incapacitated and debilitated for the rest of my life (I’m 54 and have felt 90+ I think) and depressed beyond measure anymore. Lately I’ve been wondering what life’s good for and well gad. None of my docs would agree to investigate other treatment than synthroid until my new doctor’s nurse practioner who put me on Armour just last week. I swear to god I feel 20 years younger. I’ve had increasingly debilitating dizziness for years now, and good lord I think it’s cleared. It’s been a daily nightmare and now… I’m afraid to hope. Could it be that I can live a normal life again? I have energy. I can think. I have a libido again! I’m suddenly joyful and happy for the first time in years. I’m also frankly stunned. My husband says I need to give that nurse a big kiss for both of us…. And now I come here and read nearly identical stories from so many people. It’s astonishing. I’ve been to one doctor after another trying to get some answers now for years. And then I give up, and then it gets so bad I start all over again. I’ve suspected for years that the culprit was insufficiently-treated Hashimoto’s, but of course that suggestion has always gone nowhere. Thank you for your work.
Sandy said:
Sep 18, 08 at 6:08 amHi Janie
I would like to thank you for your courage and determination. I am a thyroid cancer patient from New Zealand and have been treated with Eltroxin / Levothyroxine for nearly two years. I had been absolutely devastated by the reality of not ever feeling ‘normal’ energy levels in this time. Some weeks ago the new formation Eltroxin hit our headlines as people who had been taking their T4 meds (GSK is the only subsidised Thyroxine med here) for years, began to complain about new and unpleasant symptoms (the possible connection with GSK’s med is disputed by some). Thus began my search for information through local discussion boards etc – and the trail leads to your wonderful site.
We are trying to start up a support group/society here. We intend to continue to advocate for greater choice and for ‘listening’ to patients, and I (along with others) hope to convince our doctors to prescribe T4 + T3, or WTE; as well as find a pharmacy willing to supply it.
Thank you so much for the resources you so readily share, and for all of the research and time you have put into this. Your knowledge and experience benefits sooooo many.
You are a legend !!
Mel said:
Oct 17, 08 at 10:44 pmHi, I agree with the comments above. Thanks for the site. It is very informative and highly needed for so many.
I just wanted to respond to Sandy’s comment above. And say, that I am on Whole Thyroid, I am from New Zealand too. And there are doctors that do prescribe it. And a pharmacy that makes it over here.
Pharmaceutical Compounding New Zealand compounds whole thyroid and also, dhea, and other hormones such as progesterone, estrogen (natural hormone replacement therapy). I have a doctor that they recommended for my region. Near Wgtn. Anyhow, best wishes for your recovery!
And PCNZ have a site with their contact details.
It is http://www.pharmaceutical.co.nz/
Their Phone number is (09) 4425850
Let me know if you need more info…
Thanks again, for this site!
Mel