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Category: Health Care

Good grief! Stop the judgment!

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.

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The tortoise and the hare: the STTM movement is the tortoise, but we’re winning!!

Hardly a person hasn’t heard Aesop’s fable of the tortoise and the all-too-confident hare, running their I’ll-prove-to-you-who’s-boss race. The hare was FAST and certain to win the run. But the ever-so-committed tortoise, even if slow, slower and slowest…was steady…and won the race.

Until recently, I thought our thrust and determination to change the Big Pharma, zombie-doctoring medical system in the treatment of hypothyroid would be like the hare. We’d get the attention of the mass media through our great determination, shout the message of a FAR better thyroid treatment, and create huge change.

But I think I was wrong. Change has occurred, but we have been doing it like the tortoise…slow and steady.

Slowly but steadily, we are seeing more and more doctors starting to “get it”, even if they still have a way to go. Slowly but steadily, folks are finding out why they have less stamina than others, or depression, or rising cholesterol, or fibromyalgia, or thinning hair in the face of the dogged “normal” diagnosis…all due to an inadequate medication called T4, aka Synthroid, Levoxyl, Eltroxin, et. al. and a lousy lab called the TSH.

Slowly but steadily, folks are finding out about desiccated thyroid to treat their hypothyroid, and cortisol to treat their adrenal fatigue.

Even the STTM book has been like the tortoise. Literary agents didn’t get it, nor did huge publishing companies. I finally stopped counting, but I bet I had over 200 rejections. They all thought it was simply “another” thyroid book. So the fruition of the STTM book came out of true sweat and tears, and a lot of cuss words as I squirmed through my frustrations. Yet, the STTM book–a PATIENT-TO-PATIENT book of which I was only the messenger, is not only a steady seller like the tortoise was steady, but sales keep growing every month, reviews are excellent, and lives ARE changing. How can you criticize a message, whether the STTM site or the book, that is based on the positive and critical experience of thousands of patients around the world!!

Change IS happening! Like the tortoise, we’re winning the race and creating change, bit by bit, whether it’s via STTM, various internet thyroid groups, other good books, or just word of mouth. We’re all a part of it. But we can’t be complacent, because it’s truly obvious by blogs and websites I read that there’s still a huge body of hypothyroid patients still suffering on T4 who need to find out what WE have found out. But it will happen, bit by bit. 🙂

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Has progress been made with thyroid treatment??

Sometimes I ponder: the current movement away from Synthroid & Levoxyl and all other T4-only meds to desiccated thyroid like Armour (as well as the understanding of the high prevalence of adrenal fatigue with thyroid patients), has been going on for ALL of the 21st century. In other words, patients were starting to talk about desiccated thyroid like Armour by the year 1999, and Yahoo’s Natural Thyroid Hormones group was started in 2002. Other patient groups sprung up around the same time. The latter group is also where the knowledge about adrenal fatigue in thyroid patients grew, which was further added to on STTM. So….has there there been any changes in the way thyroid patients are treated for their hypothyroid and related conditions?

The YES

Sometimes I can say a resounding yes! There are many doctors around the world who are looking at Stop the Thyroid Madness (STTM) and listening to what is says. STTM is about the real life changing experience of patients! Some doctors tell me outright, either via the Contact Me form or by responding to my blog posts here, that they are reading it and approving the information. Or, I find out about other doctors second hand by patients who tell me their doctor TOLD THE PATIENT to read STTM. The latter definitely makes me chuckle when so many doctors tell patients that information on the internet is DANGEROUS! 😆

I can also say yes when I read the comments of patients on various thyroid patient groups on the internet. Because of the information patients have learned from STTM, which is in turn passed into the groups, patients all over the world are making demands in their doctor’s offices, and some progress is being made all over the world.

And a final yes can be uttered by me when I see a few but growing number of websites promote desiccated thyroid.

The NO

But there are so many situations where I have to say no. 1) When doctors on internet forums TO THIS DAY continue to give lousy advice to thyroid patients, it’s disheartening. 2) When patients on thyroid patient groups TO THIS DAY continue to have doctors state each and every ridiculous give me a break comment, it’s sad. 3) When a famous female talk show host continues to ignore each and every email sent to her for years about the deplorable situation across the world with thyroid patients, as well as seem to misunderstand her OWN thyroid and potential adrenal problem, it’s maddening. 4) And when I can run into patients DAILY when I go to the grocery store, or to the gas station, or to any public place, who are still on Synthroid or Levoxyl and coping with innumerable symptoms of a poor treatment, not excluding adrenal fatigue, it’s scandalous.

So the complete answer? Yes and no. The ball has definitely been rolling for better treatment. Some doctors out there are truly listening. Many patients out there are learning and demanding change. It’s happening. But baby, we have a LONG WAY TO GO. And the power will be in the hand of patients who question their treatment, find answers via STTM and other websites and patient forums, and continue to demand change from their doctors and the entire medical establishment. I just hope to see more change sooner than later, don’t you?!

p.s. Want to spread the word?? Go HERE to order a t-shirt or bumper stickers. You CAN make a difference!

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Does it make sense? Nope. In fact, it’s just plain STOOPID.

If you were told that water wasn’t important to your well-being, and thus, if you want it, you will now need to pay a LOT more for it, would that make sense?

Nope. And neither does what Medicare has decided about Armour Thyroid.

Medicare is the government’s health insurance for those of you age 65 or older. It’s also available for those with certain disabilities, and for any age with permanent kidney failure requiring dialysis or a kidney transplant. And recently, the almighty Medicare has notified those using Medicare that it will no longer cover Armour. Why? Because it fits under medications considered “less than effective.” And poop on top of garbage…Medicare also recommends T4.

You have got to be kidding.

Armour thyroid is conclusively, adamently and overwhelmingly changing the lives of those who switch to it. Conversely, T4-only medications like Synthroid, Levoxyl and others have conclusively, adamently and overwhelmingly left most if not all hypothyroid patients with continuing hypothyroid symptoms of one degree or another. Yet, Medicare has dictated that an inferior treatment is the medication of choice and will be covered, and a medication that changes lives is not worth being on their formulary.

There is a pervasive madness going on out there.

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