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Getting the facts straight about Dr. Sydney Wolfe, and what YOU can do.

armourbottleWith 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.


2 replies

7 reasons you’re gonna love Forest Pharmaceuticals (told ya so)

Now being announced on the Forest Pharm hotline at 866-927-3260, the following strengths of Armour are now completely available again:

1) 15 mg. (1/4 grain)
2) 30 mg. (1/2 grain)
3) 60 mg. (one grain)
4) 120 mg. (2 grains)
5) 180 mg. (3 grains)
6) 240 mg. (4 grains)
7) 300 mg. (5 grains)

Yessiree, the above represent the different size and strength tablets of natural desiccated thyroid via the Armour brand, most of which had been unavailable for quite awhile. The 90 mgs is still on backorder.

Rejoice!

P.S. And we thank RLC Labs for their continued availability of Naturethroid and Westhroid, plus Sriprasit Pharma Co., Ltd. in Thailand for their Thyroid-S.   Because no matter how hard any pharmaceutical company, Endocrinologist, certain hospitals,  or group of physicians (see below) tries to sing the praises of T4 treatment with Synthroid, Levoxyl, Levothyroxine, Eltroxin, Norton for thyroid disorders or hypothyroid….WE KNOW BETTER.

(Want to be notified of my blog posts? Curious what’s on my mind? Use the Notification method to be informed. Look on the bottom left of the links where you can sign up. )

3 replies

A real life horror movie: suckered by Big Pharma marketing. Part 2

(Want to be notified of my blog posts? Curious what’s on my mind? Use Notifixious to be informed. Look on the bottom left of the links where you can sign up. )

Recently, after we watched a semi-scary movie about being suckered, a friend brought up my blog post of last July where I described a terrifyingly-real horror movie.

The plot: stunningly convince hundreds of millions of individuals worldwide that what is obvious, isn’t. i.e. it’s all in your head, you are adequately treated on Synthroid, Levoxyl, Eltroxin, Norton, et al,  and not only that, we’ll bandaid your continuing problems with more medications.

A second plot: also completely hoodwink those with top notch higher medical educations and experience by churning out the the exact same poppycock, and reward their stupidity with gifts.

The central villian: Big Pharma, followed by the doctors who bought the lie

Exactly a year ago this month, Science Daily came out with an article, citing two York University researchers who estimated that the U.S. pharmaceutical industry spends almost twice as much on promotion as it does on research and development, contrary to the industry’s claim. In other words, the researchers estimated that $57.5 billion in US dollars was spent on pharmaceutical promotion in 2004–the year they were studying. Yes, I said BILLION.

Breaking that down, Big Pharma spent approximately $61,000 per physician in promotion of their products.  And they concluded that both figures were UNDERestimates.  In other words, they concluded that the US pharmaceutical industry is marketing-driven rather than “life-saving”.

And adding fuel to the fire: most doctors believe every thrust of that marketing. I recently participated in comments with other wonderful patients in response to a DO/Endocrinologist, Dr. Thomas Repas, who has clearly bought the Big Pharma marketing when it comes to levothyroxine. You can read his posts and our comments here, here, and here.   Dr. Repas is exactly the kind of doctor who has  starred in our horror movie, and the kind of doctor that patients have lamented about for years.  Read the  Give Me a Break list of comments made by doctors, as well as further comments on the January 1st blog.

But Dr. Repas is in good company. Doctors have believed the Big Pharma lie about T4-only medications, and against desiccated thyroid like Armour, Naturethroid, etc. for 50 years.  In the patient-to-patient  Stop the Thyroid Madness book, you can read about the first tableting of Synthroid in 1955 and the strategic and successful promotion of T4-only, in spite of the fact that T4 was known to be unstable for decades.

And today, more than 50 years later, very few of us have been untouched by the Big Pharma push for levothyroxine T4-only treatment.  My own mother was suckered, and I was suckered.  And until patients started to make a huge push for desiccated thyroid treatment the last few years, nearly every single doctor around the world had been suckered.

We still have a way to go. But we’ll get there, bit by bit.

5 replies

Doctors still have a long way to go a.k.a. Those symptoms might just be the thyroid!

Just as I was finishing up the post below about a short summary on the Endocrinology Today website, I saw a link at the bottom of the page that interested me.  It took me to a blog post on the same site from December 10th titled “Why can’t it be my thyroid?”.

And a slew of thyroid patients around the world, as well as a growing body of doctors,  would completely disagree with this post.

Namely, a DO explains the problem of patients arriving in doctors offices with “innumerable possible symptoms of hypothyroidism” including “fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others.”

Yet, he bemoans, these patients have a “normal TSH” which is “well within the normal laboratory reference range.” He also refers to their normal free T3 and free T4, and states there is no history to suggest pituitary dysfunction or that the TSH is unreliable.”

He then proceeds to pat himself on the back because he 1) will treat some patients with a high-normal TSH and other clinical features,  2) he will treat to a low-normal TSH of less than 2.0, but like the good-boy-doctor, “still within the normal laboratory reference range” and 3) he will not induce iatrogenic hyperthyroidism, even if symptoms persist. (yikes)

“Iatrogenic hyperthyroidism”??  Since “iatrogenesis” refers to harmful medical procedures, he’s probably referring to a TSH below the range, which in his mind, equates to hyperthyroidism.

***Then comes the observation that has made many thyroid patients shiver, since so many doctors have said it: because he feels that adding T3 to T4 has more negative results than positive, he explains to his patients “that there may be causes of their symptoms besides the thyroid.”

THUD.

So here is my 6-point response to any doctor who might share these beliefs:

1) There’s hardly a thyroid patient around who hasn’t had a so-called “normal” TSH in spite of clear and obvious hypothyroidism.  The TSH lab test frequently lags behind what is reality in the body, and has been doing so since it’s creation in the early 1970’s (see Chapter 4 in the Stop the Thyroid Madness book for history).

2) Having a “normal” free T3 and free T4 means nothing. It’s “where” the result falls in that range that means something. i.e. patients all around the world are noticing that having a free T3 mid-range or lower in the presence of hypothyroid symptoms is usually a BINGO lab result pointing to hypothyroidism.

3) Exactly because doctors tend to dismiss clear hypothyroid symptoms as “something else” thanks to a lousy TSH reference range, a burgeoning number of thyroid patients are falling into adrenal fatigue with its low cortisol, which serves to mess them up even more.

4) A huge body of thyroid patients who are on desiccated thyroid hormones (aka Armour, Naturethroid, etc), and who finally have a complete removal of symptoms with a normal temperature and heartrate, also have a suppressed TSH lab result, and not one iota of “iatrogenic hyperthyroidism.”

5) When it appears that adding T3 to T4 is having negative effects, the problem is most likely adrenal fatigue that needs correction, and/or low ferritin, NOT deciding that the symptoms must be from another cause or T3 doesn’t work.

6) “Fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others” may be shared in other conditions, but you are most likely missing CLEAR symptoms of hypothyroidism, both in the undiagnosed patient with a so-called normal TSH, or with a patient treated with the lousy thyroxine, which leaves most everyone with continuing hypothyroid symptoms.

“I’m sorry. It IS your thyroid” is exactly what patients need to hear.

How’s your weight?? 6 Holiday Facts for Thyroid Treatment from Stop the Thyroid Madness

(Though this post was originally written in 2008, it has been updated to the present day and time and still applies to TODAY’S holiday! 🙂 )

With the holidays here and all the goodies, it can make us all shudder as we deal with 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 or T3:

1) WP Thyroid, NP Thyroid,  Naturethroid, T3, etc or any other excellent 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 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, or even adding T3 to that T4, is not meant to be a weight loss pill.

2) NDT or T3 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 NDT 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 or T3, get the water.  Or even better, do it sublingually.

4) Don’t expect NDT 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 NDT. 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.

HO! HO! HO!

JanieSignature SEIZE THE WISDOM