doctor 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 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.

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.

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??

How many doctors can I strangle with my bare hands?? Grrrrrrrrrrr.

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, 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 Armour for a year. But suddenly, she felt the need to return to her groups and seek feedback. Because 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, a needless condition of over-stressed and under-functioning adrenals. As a result, T3 in Armour starts to pool in the blood, causing anxiety, insomnia, and all sorts of low cortisol symptoms. 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. (Belinda’s 2 grains tells me she was being dosed by the TSH)
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.
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 or dedicated, 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 are huge 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.

(See Deborah’s story about ceasing to smoke with adrenal fatigue)