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FDA’s Safe Use Initiative–think they will listen to our cries about T4-only meds?

EarplugsAs a thyroid patient who was profoundly harmed by the use of Synthroid and Levoxyl in the treatment of my hypothyroidism, and as an activist who sees this same harmful truth with potentially millions of other patients, I find this recent news interesting.

But you gotta wonder if they will be wearing noise reduction headsets and ear plugs…or not…when it comes to the scandal of synthetic T4-only medications.  Will they?

Just today, the U.S. Department of Health and Human Services and the Food and Drug Administration (FDA) announced the Safe Use Initiative, “a program aimed at reducing the likelihood of preventable harm from medication use”.

Statements I gleaned from this initiative include:

1. Today, tens of millions of people in the United States depend on prescription and over‐the‐counter (OTC) medications to sustain their health–as many as 3 billion prescriptions are written annually. Too many people, however, suffer unnecessary injuries, even death, as a result of preventable medication errors or misuse.

2. Although FDA and many other stakeholders have been working to improve how the healthcare system manages medication risks in the United States, it is widely recognized that more needs to be done to protect the public from preventable harm from medication use.

3. Medications offer great benefit, but they come with risks. Whenever medications are not used optimally, risks of harm can increase significantly.

4. FDA proposes to identify, using a transparent and collaborative process, specific candidate cases (e.g., drugs, drug classes, and/or therapeutic situations) that are associated with significant amounts of preventable harm.

This initiative is actually far broader than what I gleaned above, and also involves self-abuse, exposure of dangerous medications to children, dire side effects, and more. Five areas are also specifically targeted:  Consumer medication information (CMI), Medication dosing devices, Acetaminophen toxicity, Alcohol-based surgical preps, and Medications in vials. You can read more in the fact sheet.

But if the FDA is going to do their job with this initiative, or do their job overall, you have to wonder if they will listen to and include the problems associated with being treated with a T4-only medication as experienced by millions of patients worldwide. Continuing symptoms of hypothyroidism while on this inadequate treatment is widespread and damaging for many, causing hands reaching deep in pockets to pay for numerous doctors appointments, besides antidepressants, anti-anxiety meds, blood pressure meds, statins, cortisol meds for adrenal fatigue, and other medications which we would have never needed, and would have been preventable, if we had been on natural desiccated thyroid like Naturethroid or Westhroid in the first place.

Many patients on thyroxine, T4-only medications will also report actual hospital visits due to the side effects of a poor treatment.

In other words, thyroxine aka levothyroxine aka T4 treatment has been an unsafe and harmful treatment, causing millions to suffer unnecessary injuries and side effects for over 50 years of its useless and popular use.  It fits the Safe Use Initiative. Or at the very least, it calls for the FDA to listen to patient experience with this lousy choice to treat hypothyroidism.

Listen to us, FDA. Listen and be wise.

P.S. See the blog post below about a genetic reason why so many do lousy on T4.

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I met hundreds of millions of women today…in one woman

bunny Michelle, 40-or-50-something, came over to my house today to go over some paperwork. I hadn’t taken my Armour yet, and I said “Excuse me, I need to pop my thyroid meds under my tongue.”

“Oh, I take thyroid meds, too.  Synthroid” she explained as she was writing on the papers with her pencil.

Now when I hear something like that, being who I am, I’m like a bear in a china cabinet who suddenly smells honey.  So as not to overwhelm,  I casually say “Oh, I used be on Synthroid.” And after a long pause while we are going over the paperwork, I say “Did you know there’s a worldwide patient revolution going on against medications like Synthroid?”

At the point, she raises her head in curiosity.

I then stick my paw in the honey: “You and I and millions have been put on meds like Synthroid and then told we are “normal” because the TSH says so. But all of us have continuing symptoms of hypothyroidism.  It’s a lousy medication. “

And when I laid out what those continuing symptoms were, her eyes got as big as saucers and she was shaking her head up and down in recognition. “Depression, rising cholesterol and blood pressure, easy weight gain, fatigue, less stamina than others, dry hair and skin, feeling cold, etc”, I told her.

And the most profound aspect of Michelle? She lives her life like the Energizer Bunny, going and going and going. She told me she often doesn’t get home until 6 pm doing her job, and she clearly has a lot of professional responsibilities.

But does an active Michelle mean that Synthroid works and is just as good a thyroid treatment as desiccated thyroid? You know the answer. She revealed that she’s quite tired when she comes home, wishes she had more energy, and still has issues with her weight, even though she lost some when she got on Synthroid.

And reading between the lines, it was clear that Michelle is probably on an anti-depressant, a statin, and a blood pressure medication.  And…she clearly has an adrenal problem that’s only going to get worse. She has a terrible time falling asleep at night (high cortisol), and is very sensitive to light and noise (high or low cortisol).

Suddenly it dawned on me. I am sitting across hundreds of millions of women, and some men. I am listening to how millions live their lives–making a living, maintaining a home, loving their spouses and children, interacting with people.  But underneath it all, it’s not a pretty picture. They cope, and they cope again.  And they dish out their money for more medications to treat the very symptoms caused by an inferior medication. And as they age, they’ll pay each of their millions of prices, just as my mother did, and as I was headed.  Energizer bunnies with faulty batteries.

P.S. Barack Obama has a health care reform plan. Will it change the lives of those 50 million with thyroid disease in the US, or will it only continue this T4-only travesty and health care scandal?  Are we headed in the same insane direction as the UK when it comes to T4-only?  Express your opinion.

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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.

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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!!

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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 STOP THE THYROID MADNESS book is out!

UPDATE: I am pleased to announce that the most gutsy, revolutionary, comprehensive and practical book on the subject of diagnosis, treatment, and medications for hypothyroid, as well as related conditions, including low ferritin, adrenal fatigue and other problems which befall hypothyroid patients…is out! This is YOUR book as a patient-to-patient book.

The link below will take you to the Publisher’s website. On the home page, you can read about the publisher. Then click on the PRODUCTS page to see the book and information. Click on the DOUBLE GREEN ARROWS to open up the entire text plus shipping information.

www.laughinggrapepublishing.com

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Yup, it’s done. It’s complete. And I can say without a doubt that there is NO book on hypothyroid as hands-on as this one. Why can I say that? Because the book is based on YOUR EXPERIENCE and thousands like you. Because this is THE patient-to-patient book. Yes, I wrote it, but YOU wrote it, too.

Where is the STTM book available? It will FIRST be available right here on the site in approximately two weeks. It’s about 300 pages and will sell for 19.95. So keep coming back here.

Is the STTM book a copy of the website? Not exactly. Yes, you will see some things in the book that ARE on the website. That was important. But….you will also find a chapter totally on T3. You will learn some history that’s not on the website. You will get more details on adrenal support. You will have new stories of others. You will read a chapter totally written for and about doctors. And there’s much more that is not right on the STTM site…little details inserted here and inserted there.

Why did I write it? Because though the STTM website has done WONDERS to reach people, MORE is needed. There are folks out there who are NOT coming to the web, or even know to look for answers, and this book will reach them. And….it can simply be more productive to have a BOOK to refer to and a BOOK to read when you are traveling in the airplane or waiting in the doctor’s office. AND…..FINALLY, we have something to HAND THE DOCTOR when he or she doesn’t get what we are talking about…or to our family or friends when they don’t get it, either.

Get ready. I’m excited. I hope you are too. img_0261.JPG

P.S. Guess what Oprah Winfrey may be drinking daily?? Soy milk. And since soy is a known thyroid inhibitor, guess what she’s doing to her thyroid? Quoted directly from her site: Thanks to all the yogurt and calcium-enriched soymilk she consumes, she’s getting an average of about 1,100 mg of calcium daily OOPS.

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