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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.


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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.

What is going on with the Texas Medical Board?? Potentially worrisome.

This 2008 blog post was updated in 2015 here: //www.stopthethyroidmadness.com/2015/07/28/medical-boards-and-the-tsh-how-they-fail-thyroid-patients-worldwide/   Enjoy!!

**************

I was informed today that a very popular and well-liked doctor in Texas, who treats many hypothyroid patients, was disciplined recently.  And for what?  Under the column titled NONTHERAPEUTIC PRESCRIBING, it states:  The action was based on Dr. Launius’ prescribing Adipex, Adderal and Armour Thyroid to patients when such medications were not indicated. www.tmb.state.tx.us/news/press/2008/101608a.php

Adipex and Adderol are both central nervous system stimulants, and I can’t comment one way or the other. But the mention of Armour thyroid as “not indicated” is potentially worrisome, especially with similar disciplinary actions brought upon well-liked and wise doctors like Peatfield and Skinner of the UK, Derry of Canada, and  Springer in the US–all who dared to make obvious symptoms more important than ink spots on a piece of paper.

Take Kymm, a 45 year old woman.  She has manifested hypothyroid symptoms for 15 years since the birth of her daughter.  Yet during those entire 15 years, her TSH lab result has been completely “normal”…i.e. hypothyroidism has never been “indicated” based on the typical and widespread gold standard of diagnosis: the TSH.  But she has never, ever been normal with 15 years of easy weight gain, chronic depression, thinning hair, rising cholesterol, and other clear hypothyroid symptoms. And she has in fact started on Armour…and is soaring.

Kymm is not an oddity.  Thyroid patients on internet groups report going years with a normal TSH, no diagnosis, yet clear symptoms which are ignored by their TSH-obsessed doctors.   So their doctors may have avoided disciplinary action, but did they truly practise the art and science of healing??

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The dirty-yellow brick road to ADRENAL FATIGUE…are you headed there??

 

STTM YELLOW BRICK ROAD(This page was first written in 2008 and has been updated to the present day and time. Enjoy!)

Do you ever feel like you want to strangle your doctor with your bare hands?

Of course, we don’t mean it literally, but there is heightened frustration about the lack of knowledge displayed by our doctors! 

Today, I am once again appalled and saddened by the endless body of thyroid patients who continue to plummet into the abyss of adrenal fatigue/adrenal insufficiency, day after day after day. And it just never needs to happen if doctors would simply pay attention and be informed.

Belinda is the perfect example.

She didn’t participate in thyroid patient groups anymore, living her life happily, because she thought her post-RAI thyroid treatment was under control, being on 2 grains of Natural Desiccated Thyroid for a year and a “normal” TSH.

But suddenly, she felt the need to return to her groups and seek feedback. Because 2 grains was not an optimal dose for Belinda. She has become more irritable and moody, has a hard time falling asleep, and feels frequently anxietal. Labs are redone, and she finds herself with a slightly over-range free T3 and a very suppressed TSH. Her doctor decides to lower her thyroid meds, which in turn improves her insomnia and anxiety, but weight starts piling on. She’s confused and wonders how she can find her balance between being on too little with unwelcome weight gain and being on too much with uncomfortable anxiety and insomnia.

What Belinda didn’t get, and what her doctor didn’t get, is that Belinda had now joined the dubious camaraderie of those with adrenal fatigue/adrenal insufficiency–a needless condition of over-stressed and now under-functioning adrenals i.e. low cortisol. As a result, T3 in natural desiccated thyroid starts to pool in the blood, or raises the inactive Reverse T3, either causing anxiety, insomnia, and all sorts of low cortisol symptoms.

In Belinda’s case, the problem was that 2 grains was not an optimal dose for Brenda, even if her TSH looked oh-so-normal! Because it’s never about the TSH. It’s about where our free T3 falls and more.

Thyroid patients just like Belinda have to first discover what is going on, then face the complicated balancing act of treating adrenal fatigue AND hypothyroidism. And it’s a path that never needed to happen.

WHAT IS POTENTIALLY TAKING YOU DOWN THE DIRTY-YELLOW BRICK ROAD TO ADRENAL FATIGUE??

  1. Being undiagnosed, or being dosed by, the faulty TSH lab test and its dubious “normal” range, which will leave you with lingering hypothyroid symptoms. 
  2. Being treated by T4-only medications like Synthroid, Levoxyl, Eltroxin, et al, which end up teasing your adrenals to work harder to take up the slack of an inadequate treatment, then to fall into the abyss of low cortisol.
  3. Lowering your expectations of what “normal” is. No, it’s not normal to have less stamina than others, to be on an anti-depressant to bandaid your hypo depression, to feel colder than others, to require frequent naps, to feel the need to avoid people, to be bothered by lights or noises, to be told by those you love that you are too defensive or over-reactive…and so on.

I hope anyone reading this comes to an understanding that you canNOT enter your doctor’s office as if you are entering the throne of a god. Your doctor, no matter how educated, dedicated or wonderful, may not have a strong understanding of the role of adrenal function in relationship to bad treatment via T4-only meds or the TSH lab range. You may have to bring this knowledge to your doctor, or find another one who is either learned, or open-minded. Because your chances of having adrenal fatigue/insufficiency are higher if you are on T4, if the TSH is worshipped by your doctor whether on T4 or desiccated thyroid, or if you keep walking into the doctor’s office and hang your own knowledge on the hook outside his or her door.

JanieSignature SEIZE THE WISDOM

 

 WANT TO UNDERSTAND MORE ABOUT HOW WE FALL INTO HAVING LOW CORTISOL?  

Order the STTM II book and read Chapter 15. It’s brilliantly written by an MD who gives a most excellent explanation of how we get there!

 

 

 

STTM graphic How cortisol can cause problems when raising NDT

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Thank you to my doctor–what a BREATH OF FRESH AIR

Started with a new doc. He prescribes Armour and is reading the STTM book. That latter in itself is an eye-popping miracle.

And…as we were going over my extensive labwork, which he does for new patients, and as I was lamenting the way too many doctors put their patients on the lousy statins (when all they need to do is treat hypo CORRECTLY), he stated, with a sigh of dismay and humility, something to the effect of: We doctors are simply too busy to keep up with the latest good information that patients are finding out far ahead of us.

I nearly fell off my chair!! He was honestly and humbling admitting that patients are finding out good information far ahead of doctors! i.e. he was NOT dissing the internet; he was NOT dissing that a patient could actually be more informed than him; he was not dissing information that goes against the Big Pharma Con Job .

This doc is a keeper.

p.s. Think your doc is open-minded enough to read the STTM book?? You can have the publishing company send one directly to your doctor. Click on the SEND A BOOK TO YOUR DOCTOR.

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