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Category: Starting the Site

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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No, Mr. Johnson, pharmaceutical marketing does NOT benefit patients

In the Feb. 2nd issue of the New York Times given to me, an editorial questioned the practice of doctors receiving gifts from the pharmaceutical industry and medical device manufacturers. The editorial described how an article published in the Journal of the American Medical Association clearly stated that current guidelines against gifts, free samples and promotional incentives “are far too weak”, and these practices should be prohibited.

The Times editorial stated that such proposals “are hardly onerous,” and added, “It is long past time for leading medical institutions and professional societies to adopt stronger ground rules to control the noxious influence of industry money on what doctors can prescribe for their patients”.

Sounds good, so far.

But the followup Letter to the Editor by Ken Johnson, a senior vice president at the Pharmaceutical Research and Manufacturers of America, was enough to make you puke.

He stated that restricting the free samples given to doctors would be “unfortunate and could negatively affect patients who rely upon the $16 billion worth of medicines distributed each year.”

Uhh, Mr. Johnson, I don’t doubt that there are medications which save the life of many folks, and are beneficial. But the fact that patients “rely” on $16 billion worth of medicines is a crock in itself, since SO many of those prescribed medicines, like the lousy T4-only thyroid medications, DON’T WORK, or cause side effects WORSE than the condition they were treating. Additionally, there are a plethora of natural or safe supplements which can create the same GOOD effect of some medications, WITHOUT the side effects. My husband, for example, used to be on Celebrex, and now gets the same great relief by being on 2 capsules of Ginger Root a day. He also used to be on Statins, but now keeps his Cholesterol down by using ground Flax Seed and Flax oil.

Mr. Johnson continued it his reply: “We believe that pharmaceutical companies should not offer or provide anything to doctors that would interfere with the independence of their prescribing practices,” but, “clearly, pharmaceutical marketing benefits patients.” He concludes, “It also enables doctors to learn about new therapies and diagnostic tools,” and, in the end, “knowledge is the best medicine of all.”

Mr. Johnson, we as patients have seen it CLEARLY demonstrated that your free samples and incentives DO INTERFERE with independent thinking of our doctors. They give us the Synthroid prescriptions which you have so aptly promoted, and we still have hypo symptoms. When we complain of continuing symptoms, they throw out a couple of those free anti-depressants you give them, with a prescription to follow…or they cast out those prescription papers for Statins when our Cholesterol is too high from being on the inferior T4-only meds. Or they toss us a few packets of anti-inflammatory meds when we ache and hurt from being on the inferior T4-only medications you promoted like the ads on your free notepads and pens.

And yes, knowledge is the best medicine of all–knowledge that many medications you blindly promote have toxic side effects, or don’t work, or there are MUCH better alternatives.

Pharmaceutical marketing, Mr. Johnson, has mostly benefitted the linings of your pockets, and has made thyroid patients like us sicker, and has made our doctors robotic-thinking lackeys who seem to think they are “doctoring” when they throw us your latest pills. And that mindless way of practicing medicine is failing the oath to “do no harm”.

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Why this site was created

Welcome to StopTheThyroidMadness.com. You might say I became a fledging thyroid patient advocate in 2002, when I started a site on Yahoo Groups. That site grew and grew, and so did my knowledge along with with everyone else’s. We have all been living guinea pigs and self-educated in the face of doctors who had little to NO insight about Armour, correct treatment, and side issues like Ferritin and Adrenals.

And having a website on the side was something always on my mind. But with the growing Yahoo group, and with my busy private life, it kept being swept under the carpet.

But last year, I started paying attention to a few doctor-to-patient websites. And I was APPALLED at the LOUSY advice a particular doctor was giving desperate patients who came to their site, seeking help. The more I read, the more frustrated and angry I got. Thus, I finally put “the pedal to the metal” in the Fall of 2005, and with the help of a website designer, put all my articles and information together, as well as brought on board a few other knowledgeable thyroid patients whom I knew could offer a lot.

The result: Stop the Thyroid Madness. This site is intended to educate and to give HOPE to the millions of thyroid patients who remain sick due to untreated hypothyroid, or under-treated hypothyroid.

Additionally, this site is dedicated to a young and desperate gal named Miserable Mom, who came to one of these doctor-to-patient sites, got advice which only left her sick, and she never came back again.

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