sttm tags

With the recent blog post by health writer Mary Shomon concerning Dr. Sidney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Management Advisory Committee, there has been much brooha and fear-mongering on thyroid patient groups.

Why? Well look at it this way. This is a man of stature. He is an MD, an Adjunct Professor of Medicine, the director of Public Citizen’s health research group which promotes drug safety and public health, and editor of the newsletter Worst Pills, Best Pills, and since August of  ’08, a member of the Drug Safety Committee.  He also has a resume a mile long.

Yet in spite of his seemingly caring activism for our health and well-being, and his immense experience and education, he is clearly and completely off-base about Armour and other desiccated thyroid prescription drugs.

For example, as as editor of the Worst Pills, Best Pills newsletter,  Wolfe declared Armour desiccated thyroid as a “Do Not Use” product because it is not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available”. (Gee, funny how our experiences are completely otherwise….)

Then in the May 2003 issue (of which you have to have a paid prescription to read), he wrote an article titled  “Do Not Use! Natural or Desiccated Thyroid (ARMOUR THYROID) For Thyroid Hormone Replacement Therapy.” In that article, the clueless Wolfe stated that he supported The American Thyroid Association’s statement “There is no evidence that desiccated thyroid, a biological preparation, has any advantage over synthetic thyroxine.” (I guess millions of us and our improved heartrate, stamina, cholesterol, depression and more…aren’t evidence?)

He then proposes that Armour is mostly prescribed for weight loss, is a niche market for the unscrupulous, and concludes with “if you are offered natural thyroid hormone replacement treatment for any reason, this is a red flag and you should get a second opinion.” In a letter to consumers, Wolfe and Public Citizen state that that T3 is only needed from conversion and is predictably found from conversion, that the T2 and T1 also found in desiccated thyroid has essentially no activity, that desiccated thyroid is an unpredictable mixture, that is has no predictable biological activity…plus so many more complete and total inaccuracies based on “intellectual head chatter” not on observation and experience.

Thud.

Mary Shomon, in 2003, did a bang-up job trying to communicate with Wolfe, Worst Pills, Best Pills, and Public Citizen about the inaccuracies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chapters 1 and 2 in the STTM book which are enlightening those reading it all!

So we are left wondering, six years later, what his four-year appointment to this committee will mean. But let’s make a few things quite clear to contrast some of the fears going on and expressed on thyroid groups:

1) Armour is not being banned.
2) Wolfe is one of a current 9 members of this committee. Wolfe is not “the committee”.
3) Wolfe and seven others currently have voting rights. He is the only “Consumer Representative”.
4) There are still six more vacancies.
5) The committee is NOT the power. They simply make recommendations. And historically, the FDA can be slow to act on their recommendations, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medication like desiccated thyroid).

So what can you do? I challenge you to follow and act on the below, which puts our energies into communication, not feeding the ego and power of a misguided man with our overtly expressed fears as if they have actually come to pass :

1) Remember 1-5 above. Armour is fully available. Keep the facts straight, and fear-mongering down.

2) STTM has a powerful and growing page of testimonies of those who switched to desiccated thyroid.  Are you in there? If not, you need to be. This website currently has a huge audience. It’s noticed by doctors all over the world, as is the STTM book, which is YOUR book of YOUR experiences,  which is also being ordered by doctors. Use the Contact Me form at the bottom of that page.

3) Tell your experience with Synthroid or other thyroxine medications at the following websites:  www.rateadrug.com,  www.drugs.com,  www.askapatient.com They don’t include any of the desiccated thyroid meds yet, but you can tell of the negative experiences with all the T4-only drugs, including adrenal fatigue if you fell into that, and all your lingering thyroid symptoms.  The above links will take you to their Synthroid page–you can search for the other T4 meds.  Remember to mention Armour or other desiccated thyroid meds and how they have helped you!! Update: thyroid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only experience to MedWatch, the FDA’s  program for reporting problems.  You will see an Online Reporting Form to download. Don’t fail to mention which problems were removed or greatly improved when you switched to Armour, or the fact that you now have to deal with adrenal fatigue thanks to the inadequacy of T4-only treatment. You can also call 1-800-FDA-1088, but remember: your call is not to draw attention to Wolfe’s opinions! It’s to draw attention to how lousy a treatment T4 is as compared to how much better Armour has been.

5) Go to my article titled Synthroid Sucks: the Rallying Cry of Thyroid Patients vs. Clueless Doctors and comment on this article, including mentioning what Armour, Naturethroid or other desiccated thyroid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask questions and YOU can answer, mentioning YOUR experience and how much better desiccated thyroid has been. Clicking on that will take you to the Synthroid patient questions. Answer them. Be careful with links–they may not catch them at first, but will remove them if they do.  You can mention website names, tho, like Stop the Thyroid Madness.

7) Send people here to follow all these steps. Power is in numbers!

8 ) Use the following website to email or write your senators and representatives: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remember this!  Here’s a template letter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and places to write or call, add your comment to this post. Remember,  put your power in communication! LOTS of communication.

P.S. Did you know that the American Thyroid Association, in cooperation with the American Association of Endocrinologists, together support January as “Thyroid Awareness Month”…which is supported through an unrestricted grant from Abbott Laboratories, the makers of Synthroid?? Major UGH.

An intriguing thought: what if there were lab packages specifically designed by Stop the Thyroid Madness and all its patient-to-patient wisdom.  Well, there are!

STTM has created lab profiles in partnership with MyMedLab, a direct-to-consumer lab facility which has expanded to provide services to nearly the entire United States

This lab facility promotes the empowerment of patients in their own care, similar to STTM’s focus on educating the patient and expecting a partnership when you walk into the doctor’s office. Empowerment!

You will find a combination of both in-home collected tests (saliva cortisol) and those performed at LabCorp collection sites across the US.   Take a Peak: STTM Lab packages (be sure and click on the green What’s Included icon on the lower right. You get a lot!)

With recent news of Oprah’s continuous weight gain (currently partially due to her failure to properly treat her hypothyroidism and probably Hashimotos (see post below this), it can make us all shudder as we deal with the holidays and all that great food!

I admit it: At Christmastime, I LOVE the easy Gingerbread Boy Cookies recipe I used when the boys were little, the Microwave Fudge recipe to die for, my world famous Chocolate Chip Meringue Cookies which I color red and green, my mother’s wonderful Pralines which I occasionally try to make myself,  and Grandma’s Fruit Cake–yeah an actual fruit cake I LOVE, which I order EVERY SINGLE YEAR at this time.

And it’s hard not to gain weight! Is that you, too?? So let’s go over 6 HOLIDAY FACTS about thyroid treatment with desiccated thyroid:

1) Armour, Naturethyroid, Westhroid, or any other desiccated thyroid medication is not meant to be a Christmas weight loss pill. Desiccated thyroid medications consist of thyroid hormones: T4, T3, T2, T1 and calcitonin. They simply give you back what your own thyroid is not giving you…the same five hormones which give you back a stronger immune system, a normal body temperature & improved metabolism, better energy, healthier hair and skin, less aches & pains, emotional happiness, better lipid profiles like cholesterol, stronger bones…and on and on.  But even with all that benefit, and even though it does improve your metabolism, desiccated thyroid is not meant to be a weight loss pill.

2) Armour et. al. can only do its holiday job if you have strong adrenals or adequate cortisol treatment. Because cortisol is needed for thyroid hormones to move from your blood to your cells, you can only benefit optimally from desiccated thyroid during the holidays if you are lucky enough to have strong adrenals, or if you are giving yourself back the cortisol you need based on stable temps, blood pressure, and removal of most low cortisol symptoms.  So don’t forget that cortisol right now, and definitely consider adding a stress dose of cortisol if things get rough with the in-laws. (See Chapter 6 in the STTM book for even more details about stable temps, blood pressure, and stress dosing)

3) Don’t drink that Armour down with Egg Nog! Calcium is a known binder of thyroid hormones in your stomach, keeping you from benefiting from some of those health-giving thyroid hormones.  So if you swallow your desiccated thyroid, get the water.  Or even better, do it sublingually.

4) Don’t expect Armour to keep you from looking like Santa Claus: you still gotta exercise & watch what you eat! It’s true: the optimal use of desiccated thyroid does raise your metabolism and eats those extra calories up like PacMan.  But if you’re like me, you can still have a tendency to put on those love handle butter pounds if you eat your fill of holiday foods.  ho ho ho. To curtail the gain, add exercise to your holiday regime, or increase what you already do. I try to aerobically walk a LOT during the holidays. And when I’ve eaten a Christmas stocking full of goodies, my next meal will be nothing but high protein, like  turkey, cheeses and nuts. Or, you can also balance your intake by choosing one meal a day to be low glycemic to somewhat balance out the high glycemics you know you are going to eat later. For example, I make my breakfasts only eggs and nitrate-free bacon, or plain yogurt with berries, nuts, and Stevia.

5) Building a holiday snowman outside?  Consider an extra 1/4 grain of Armour. It’s a fact that prolonged exposure to cold increases your demand for energy, which in turn can increase your demand for more thyroid hormones. As a result, many patients find that adding an extra 1/4 grain of desiccated thyroid to one’s daily amount helps meet the demands of Frosty the Snowman or that holiday sprinkling of lights all over your house in the cold air.  Talk to your doctor.

6) Give a gift of the STTM book to a loved one. There are other good thyroid books on the market, but unlike all of them, this is the bible of patient experience on successful thyroid treatment. You’ll find volumes of information that patients all around the world have learned. A true patient-to-patient guide to feeling wonderful again.  Go here to order.  And the publishing company is extending the time you can order a book to be sent DIRECTLY to your loved one.

Who, as a smoker, hasn’t heard how deleterious tobacco smoking is for your health. Not only will you acquire health problems directly related to smoking, but your life is shortened by 10-15 years average according to statistics. My own father died at age 63 directly related to his smoking.

But in spite of strong reasons to quit, most smokers will tell you it’s NOT easy. Why? Because the nicotine in tobacco is the addictive bogeyman. Nicotine stimulates those pleasure centers in your brain, besides being a substance which “gets you going” by releasing both blood sugar and adrenaline. The American Heart Association states that “Nicotine addiction has historically been one of the hardest addictions to break.”

But for hypothyroid patients, tobacco smoking presents another whammy. Namely, it stresses your adrenals over and over. And with adrenal fatigue being a common side effect of treating hypo with T4 meds like Synthroid, Levoxyl, Eltroxin, et all, as well as being dosed by the lousy TSH, you’ve got a third reason to fall into adrenal fatigue if you are a smoker.

Additionally, another factor in the difficulty of quitting is that cortisol decreases when you try to quit. A 2006 research report found that the lowered cortisol after quitting is associated with smoking relapse and with reports of increased withdrawal severity and distress. So, when you already have adrenal fatigue, and you quit smoking–a double whammy against being successful.

What’s the solution? If you don’t have adrenal fatigue and want to quit, it may be wise to have a good adrenal support on hand, such as Isocort or any quality OTC adrenal product at your health food store. If you DO have adrenal fatigue, staying away from cigs may require adding additional cortisol to your daily amount. Chapters 5 and 6 in the STTM book have good information to help you with cortisol support.

Are you a smoker with hypo? Don’t hesitate to respond to this post with your experience. (Please note that replies are not for questions.)

READ DEBORAH’S STORY ABOUT HER ATTEMPT to STOP SMOKING.

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.