Source: someecards.com via Janie on Pinterest
I, Janie, am not very political. I’m kinda private. I see myself as representing patients solely. And I don’t let my ego push me to play like I’m the only valuable thyroid patient advocate out there, or that only MY groups or STTM are worth looking into. Chortle chortle.
But…I can see the benefit in tooting the horn about Stop the Thyroid Madness! Because I think it inspires all of YOU to know what you are a part of when you use any groups associated with STTM, or the website, or the book.
1) The Stop the Thyroid Madness revolution began in spirit in in 2002. That was when I created the Yahoo group Natural Thyroid Hormones after my own life started to make a miraculous change. And we began talking…and talking…and talking. And from all the incredible things we were learning came the REAL Stop the Thyroid Madness, first appearing on the net in December 2005…and growing all the time to what you see right now.
2) The Stop the Thyroid Madness book has been sent to over 33 countries besides the United States since 2008 and in multiple amounts. That is from the publishing company stats from a year ago, and there’s probably more now. And that’s nothing to sneeze about and is satisfying that the message of successful patient experience is going far and wide. It’s also been the #1 rated thyroid book several times. And it’s now in German and Swedish with more translations coming.
3) The STTM website gets so many monthly hits (and has for a few years and keeps growing!!) that I am constantly forced to increase the hosting memory over and over to handle it all. This is why you may occasionally go to this site and it’s down–huge amount of hits at the same time. I keep trying to tackle it by increasing memory. And if YOU appreciate the website, please considering contributing to the burgeoning monthly hosting fees here.
4) There are now 14 Facebook patient-to-patient discussion groups related to Stop the Thyroid Madness. And good ones they are, where you can chat with other patients about your issues in a friendly and helpful atmosphere! **And remember: not all patient responses should be taken as correct for YOU, so compare what you are told with patient experiences in the book.
5) Yahoo’s NTH (Natural Thyroid Hormones) group is now over 10,000 members and is the NUMBER ONE thyroid patient discussion group on Yahoo! It’s run by excellent moderators, ready and willing to give you excellent patient-to-patient experience information to consider.
6) Janie is also seeing more and more of the following:
- Emails from doctors. Yes, I continue to get a steady stream of contacts from wonderful doctors who are more than willing to ask questions about patient experiences as laid out on STTM, and that is nothing but GOOD. They are listening, one by one, and we appreciate each of you for doing that. Sure, we still have to deal with other doctors who are narrow-minded, arrogant and just plain awful. But the growth of more open-minded doctors is impressive, and they will eventually crowd out the id-jits.
- T4-only folks going downhill after a certain time of doing well. I know this outcome is hard to see when a T4-only treated thyroid patient feels they are doing well enough not to consider NDT, as if treatment is oh-so-individual. But sadly, when the failure of T4 hits, it can hit bad, like the young mother who did well for seven years on Synthroid, then came to me via phone coaching with the sudden misery of low cortisol. It had been creeping up all along. Or the 68 year old who also felt she did well for 21 years on T4, and now finds herself on three other meds (BP, statin and anti-depressant) and a lot of misery. She ignored for years what she saw coming…:(
- Other websites in support of better thyroid diagnosis and treatment thanks to STTM. STTM’s content concerning successful patient experiences has clearly influenced the way certain things are written about on other websites and books, even if the authors of the content don’t give any credence to where it came from. But it’s clear where it came from! I’ve been doing this long enough to see the progression, and STTM’s content has clearly influenced a lot of what you see on other thyroid websites and groups.
Bottom line: I am proud, and I am excited. I’m excited how Stop the Thyroid Madness has been SO influential in educating patients, changing lives…and changing the way many doctors are practicing.
And I’m just as excited to see the ways others have been inspired to contribute their own websites and groups and energy to this worldwide thyroid patient revolution, especially those who recognize that WE ARE IN THIS TOGETHER. i.e. it’s not just about one advocate or one website or one group. Someday, this entire thyroid patient movement…represented by many websites and groups….will be in history books as the most UNIQUE and INFLUENTIAL movement for change ever done.
Congratulations to ALL of us! Let’s continue to “Stop the Thyroid Madness” though all the variety of websites and groups!!
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* Send your BEFORE AND AFTER desiccated thyroid treatment photos here (or you before and after adrenal treatment, etc)
* Have fun with FLAT STTM!!
10 Responses to “Amazing things you should know concerning Stop the Thyroid Madness”
Charleen
I just want to thank you for your book and website. I was doing ok on synthroid up until a year ago. At that time, my dr said my thyroid tests were normal and I asked why I was feeling so bad. She (amazingly!) switched me to Amour. After 2 1/2 months I went back still not feeling well, but she didn’t do anything. Four months later I was feeling worse, so bad I thought I might lose my job. I went to a specialist who upped my dosage and after 2 months I was feeling better than I have ever felt since my diagnosis in 2008. My TSH test came back at .007 and this specialist said that it indicated an overdose, however, I wasn’t having any symptoms. Thankfully, he said I could make my own decision and stay on the new dosage. Your “The TSH test is useless” webpage made me feel comfortable to stay on this dosage. THANK YOU for all your work!
Pam Nonstick
Well, I must admit I give this site first when advocating to anyone wanting to know more about thyroid disease. What’s a busy gal supposed to do (after personally wading through thousands of research articles and taking actual thyroid disease sufferer’s by the hand to the doctor and still trying to get others to research some themselves.
They are, for the most part, brain fogged at first…then slowly they start identifying with others at this site and the other helpful places.
It’s a ‘cut to the chase, will ya?!’ kind of world so STTM will be pointed out first…to get the engines fired up a bit, and then the researcher can start to ‘hunger for more’ and also the most fun game ‘Pass on the information, do it fervently, do it often, and lead others to the correct information. Oh, yeah, and ‘cut to the chase’.
JSinhypoland
Go Janie! STTM is like The World Book Encyclopedia for thyroid patients….no topic too big or too small.
I’m a great fan of the STTM data…constantly evolving and spreading like wildfire.
JNFlyer
I’m on T4 only, and although initially skeptical of this site… I purchased the STTM book because I mostly notice cold hands and feet and weight gain while still on T4. I cycle on and off of Adipex to control weight gain. My doctor tells me eat less and exercise more, and the basic formula is simply calories in vs calories out. I know there must be something more going on that he won’t consider because of course TSH is normal.
The question is… if the information in STTM is true and correct, why has no one brought suit for malpractice?
Janie
Understand that STTM is primarily about worldwide patient experiences, both in what has not worked, and what has worked…as well as the wisdom patients have gained over the past ten years as to the whys and the whats. So to doubt what is on STTM is to doubt a huge and growing body of patients all over the world, which is what the website and book is based on! As far as a lawsuit against doctors or the makers of thyroxine, maybe the majority of patients are putting a lot more energy in getting well again rather than putting energy into a lawsuit.
Rachel Tripp
I am so happy that so many people with hypothyroidism are taking a stand and spreading awareness! I am a 25 year old female and I was diagnosed with hypothyroidism about 3 years ago. I too started a blog recently about my experience being “hypo”. This website is full of great information so far…keep up the good work!
Gail Longmire
I have just ordered STTM to read. I was first diagnosed back in 1999 but was being treated for it whilst I lived in Germany & it was under control. When I returned to the UK in 2001 my medication was changed & each year my weight gain goes up & my other problems get worse. I hope the book will help me understand more about the problems with hypothyriodism.
Catarina Hultgren
What you say about some patients doing well on T4 meds for a while, even years, then crashing, is sadly true…and, by then, of course, their adrenals are out of whack, along with other organs.
My hope for the future is that this movement will spread to other countries where NDT is hard or even impossible to get. I hope this book will contribute to greater patient mobilization and, in the end, freedom of choice for patients, so we don’t have just one form of treatment forced upon us by ignorant doctors.
Justine
Janie, could you elaborate in a future post about the connection between tonsillectomy, cholecystectomy, hysterectomy and hypothyroid? I would be very interested to read about this as I have had all three.
(From Janie: Justine, this sounds like a good topic you could research and write up an article about it for STTM. It would need references to research you have found, as well, as to back up what you write.)
Andrea
Janie, I just caught up with this post and want to add my thanks and congratulations to you. Thanks to you and our consults I was able to identify a terrible RT3 problem keeping me overweight and depressed though I was on Armour. I switched to Cytomel, elimiinated RT3, have improved my adrenal profile, and lost weight, going from a tight size 12 to a perfect size 6. I weigh less now than I ever have in my entire adult life. Now i’m going to re-introduce Armour slowly as we discussed. I don’t know where I would be without you – you and STTM totally rock!!