I am new to STTM Facebook forums: what can I expect?
What you have today with the STTM forums is very different than just a decade ago! i.e there were few thyroid groups! But one in particular was starting to boom in 2002–the Natural Thyroid Hormones group on Yahoo.
And within that constantly growing group, thyroid patients just like you were comparing notes, discussing, analyzing, trying new things and learning together!
And we ended up with valuable shared experiences and wisdom about what wasn’t working, what was, and what we were doing about it all successfully!
From those experiences was birthed the Stop the Thyroid Madness website, and later the book, outlining what we had learned repeatedly.
Fast forward to today: many like yourself are brand new to all this, and it can be overwhelming, can’t it !
In fact, because you weren’t around until recently, the information presented in the STTM Facebook forums can definitely seem overpowering or strange or awfully strong, making you want to question what is being stated, or feel overwhelmed, or defensive, or even angry. So here are questions you may have as someone new to the forums, and with answers we hope will help:
1) WHY am I told T4 is not the way to go? I came here for T4 support!
For over 50 years, patients have been put on T4-only meds (Synthroid, levothyroxine, Eltroxin etc) just like you are (or are going to be).
And beginning a decade ago, we shockingly discovered that most of us had lingering symptoms of the poor treatment of T4-only…whether right off the bat, or the longer we stayed on it! Not only was that a HUGE revelation that we weren’t alone, but it was scandalous! We had been repeatedly told we were normal because ink spots on a piece of paper said so. Or, based on whatever was wrong, we were told we needed to exercise more and eat less, that being a mother (or “our age”) meant needing a nap was normal, or we needed to see a Psychiatrist, or those “other” issues were not related to hypo since we were now “adequately treated”. Some of us were put on statins, BP meds, pain meds, anti-depressants, or others.
And, we were also discovering a decade ago that we got FAR better results with Natural Desiccated Thyroid (NDT), definitely more so than T4-only, And it was even more effective than being on T3-only, or being on synthetic T4 with synthetic T3…even tho all the latter were a good step up from T4-only.
Thus, the mission of STTM…and these forums…is to educate and intrigue you about patient experiences with the problems of T4, as well as about better treatment with NDT. If we didn’t tell you the truth of years and years of thyroid patient experience, we would NOT be “supporting” you at all. Support is telling you the TRUTH about the inadequacy of T4-only, not helping you stay on a med which, according to too many experiences before you, is going to eventually bite you in the behind, sooner or later.
2) Shouldn’t you be open to all viewpoints and opinions and less dismissive?
Remember….many, many thyroid patients worldwide have already walked this path before you! We already explored all viewpoints and opinions! We discussed them all, tried them all, analyzed them all. But patient experiences kept telling the truth, not “viewpoints and opinions”. We couldn’t escape the truth of our worldwide experiences: that T4 was problematic sooner or later, that NDT was changing lives (even Hashi’s patients)….and more.
So STTM was developed to relay “patient experiences and wisdom” of those who have already been there, done it, before you. Lots of us. It’s all laid out right there for you on both the website and the book, and also presented by folks who are knowledgeable enough about it right in the forums.
3) But I have a doctor. You are not a doctor. Why should I not trust my doctor who put me on this?
STTM information is not about playing doctor. STTM information is simply a compilation of worldwide patient experiences and wisdom. It’s there for you to learn from. And once you really start getting it, it’s there to take into your doctor’s office for better treatment.
Because unfortunately, we’ve learned the hard way that all too many doctors are NOT trained correctly about thyroid treatment and about the reality of so many other problems we fall into due to the inadequate protocols they use. This is exactly why so many of us headed to the internet a decade ago…and still do!!! Something was clearly wrong, wrong, wrong. And though all our discussion, comparing, and experiences, WE FOUND OUT about far better ways to treat our hypothyroidism, and so much more. THAT is what STTM is about–our experiences and wisdom.
4) But I think you are “pushy/unkind/biting/narrow-minded/bullying or “fill-in-the-negative-blank”.
It may seem that way to a few. But do note that communicating on a computer screen is RIFE with misunderstanding since you can’t see the emotion and genuine concern behind someone’s words. That is a very important fact to keep under your belt when you think the worse!! 🙁 See #4 below, as well.
Granted, there may be someone who also didn’t express him or herself well. But no group is going to be void of that. 🙁
So just remember this: there will be many attempts to educate you as to what patients have learned ahead of you! And it’s because we know the truth, and hope you will figure it out sooner than later.
5) I know of a few people who have left STTM groups with the above accusations (or want to leave). So what is that about?
This will be hard to hear, but many T4 users who come on the STTM group already have low cortisol–one of the worst side effects of being on T4-only. And they don’t know it.
So guess what low cortisol can do to some folks? It can literally affect their brain and neurotransmitters, making them chronically defensive, paranoid, angry, arrogant, condescending, critical, nasty and/or fearful. They are also the ones who tend to fight and resist and criticize over and over. And they don’t see this in themselves!! So no matter how or what we try to explain, it comes across wrong and bad and awful and mean.
And with kindness, that may be you!! I strongly recommend going to the Adrenal Info page and doing the Discovery Steps honestly and with courage. There is even more in Chapter 5, pages 81 – 85.
6) But I feel great on T4: why do you keep pushing NDT?
You wouldn’t believe the amount of T4-users who felt they were doing great, only to see more and more symptoms crop up the longer they stayed on. And some were, and are, caught by surprise when they royally crash down the line.
Remember: lots of patients have walked this path before you, even if it seems new and overwhelming right now. And STTM is all about that path already walked!
In addition, many T4 users look back after switching to NDT and exclaim “I really wasn’t doing as well as I thought.”
7) I tried NDT and it didn’t work for me!
There are clear and correctable reasons why NDT didn’t work for you. Read it very carefully.
8) People are different! You seem to keep pushing that everyone should be on NDT!
To the contrary, we are very aware that there are a small subset of folks who just may not be able to be on NDT. They might have a missing enzyme which converts T4 to T3, they might be severely allergic to pig, they might have a strong religious reason to avoid it, their serious Lyme might be a problem with NDT, or any other more rare issue.
Instead, STTM communicates that the majority can, in fact, do quite well on NDT…if they understand that inadequate levels of cortisol and/or iron have to be discovered and corrected. See #6 above.
In fact, the one reason why so many do better on NDT than T4 is because it’s giving you all five hormones which you own thyroid would be if healthy! That’s huge.
BOTTOM LINE: in all kindness, STTM forums are not T4-only support groups. Instead, STTM is about educating and empowering you based on 50 years of patient experiences before you, and about a recent decade of patients who already looked at all alternatives, discussed, experimented and mightily learned what works, and what doesn’t.
It’s up to you to listen to those patients and take that leap of faith that they just might know what they are talking about! 🙂