patient 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.

Just two months ago on January 15th, I wrote an article titled Ten Reasons You May Still Feel Bad.  Nearly every hypothyroid patient can have some of those ten problems, and if so, they need to be discovered and corrected.

And one of those issues was low B12. B12 is a vitamin which has a key role in cell metabolism of your entire body, giving you energy, sharpness in your brain, and healthy nervous system functioning.

And unfortunately, a certain percentage of hypothyroid patients have low levels of this important vitamin, largely due to digestive issues common with hypothyroidism– either undiagnosed due to the lousy TSH lab test, or undertreated on T4 meds like Synthroid, Levoxyl, Levothyroxine, Eltroxin, etc.

Symptoms of low B12 can vary from person to person, but can include numbness and tingling in your hands or feet,  tremors, poor reflexes, tongue soreness, leg pain, or difficulty walking with balance.   Psychologically, you may have memory issues, confusion, or depression. Young women may have difficulty getting pregnant due to low B12.

When doing lab work, you want a result in the upper end of the range.  To correct inadequate levels of B12, you’ll want to use high oral B12 (methylcobalamin is the recommended form of B12), B12 cream, or injections by your doctor (especially if you have pernicious anemia) .  It’s also recommended to increase your consumption of meat and dairy products, which can be rich in B12.

March 27, 2009 is the kick-off date to begin an awareness campaign of B12 health, with September 23rd being “Vitamin B12 Awareness Day”. And I highly recommend the book Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, R.N. and Jeffrey Stuart, D.O., who are spearheading this awareness.

Have you found yourself with low B12? Tell us your symptoms, how you treated it, and how long it took to stop the symptoms.

Want to be notified of these blog posts? Curious what Janie is ranting about this time? Use the Notification on the bottom left of the links.

Ever heard of Henry R. Harrower?

He came to the US from England in 1903 at age 20, and with great fortitude and drive, became an MD and Endocrinologist. He had influence in the creation of today’s  professional Endocrine Society.   He also believed (to the consternation of many of his colleagues) in the use of organs to treat conditions, such as Armour desiccated thyroid.

And in 1931, he made the following incredible statement:

“A good laboratory report is cold comfort to a patient whose symptoms remain unchanged, and the doctor can repeat such reports until he is blue in the face, but they will not help his patient much if unaccompanied by controlled symptoms and changed feelings.”

He also stated:

“Are not the feelings of the patients often as clinically valuable as the other findings? In no case can we wholly discount them.”

BRILLIANT!!  BRAVO!! “Cold comfort” couldn’t describe our reaction better when a slew of your modern colleagues have habitually discounted thyroid patient symptoms for decades in favor of ink spots on a piece of paper called “lab results” with dubious “normal ranges”. And we give the same “Bravo” to a growing body of doctors who are making a courageous change in their relationship with patients the last few years by LISTENING to the patient first and foremost.

p.s. Thanks to Stephanie Buist, working to become a naturopath, who posted the first quote above to the Facebook of a mutual friend of ours. You can read more about Harrower here.

How do you feel about what Dr. Harrower said over 100 years ago? How would you rate the Endocrinologists you’ve seen the past few decades as compared to Harrower? Have you had no more than “cold comfort”?

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.