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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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Patients and wise doctors continue to learn in leaps and bounds

IMG_2008 Just when you think we’re full of great information for better thyroid care, there’s still more to learn and find out.  Below is information that you might find interesting on STTM.

ADRENALS: For those who discovered via the 24 adrenal saliva test that they needed cortisol support, we have come to realize that some can’t do the ramping up schedule from a small amount to a larger amount without having problems from the feedback loop.

Instead, many simply need to “start” on the higher amount, which would range from 20-30 mg. You can read about that on the How to Treat page, and you’ll note that not one morning amount goes higher than 10 mgs.  With the exception of men, higher than 10 mg seems to suppress the ACTH and adrenals too much.

A NEW LOOK: To make the STTM home page more understandable to newcomers, the home page has broken down the information better into separate pages, and also has a new interesting way of using it.

LISTEN TO THIS INFORMATION: STTM has short audio clips you can listen to, or send someone else to, to help understand what this is all about.

STORIES OF OTHERS: Individual real-life stories continue to come in, proving over and over that this revolution for far better care really does work.

FEEDBACK and MORE FEEDBACK: I get emails daily about lives changed thanks to this patient revolution. It’s wonderful to see people finding out WHY they have depression, less stamina than others, rising cholesterol and blood pressure, hair loss plus other lingering symptoms of  hypothyroidism left untreated because of the lousy TSH, or undertreated because of the equally-lousy T4-only treatment like Synthroid. I can’t begin to post them all, but STTM does contain a sampling of this feedback.

DESICCATED THYROID BRANDS: Wow, the list is growing for desiccated thyroid brands around the world! We now have listings for Denmark, Germany, Italy and New Zealand, as well as more detailed information on compounded thyroid in Australia. Thanks to all who contributed.

KEEPING UP WITH ADDITIONS TO STTM: In case you didn’t know, there’s a page meant to inform you of what’s added to STTM. I may neglect to list a few additions occasionally, but think I’m pretty close to getting most of them up there.

MEDICAL RESEARCH TO PROVE WHAT WE ALREADY KNOW: Did you know that STTM has a page which compiles research and studies which prove what we as patients already know? It’s not loaded with research yet, but it’s growing. And if you have found more to contribute to that page, use the Contact Me form.

SITE MAP: And bottom line, you can always go to the Site Map, or review the information more compactly in the book, which patients are taking into their doctors offices.

*Want to be informed of these blog posts? Curious what’s on Janie’s mind? Use the Notifications on the left at the bottom of the links.

*Stop the Thyroid Madness T-shirts are now 50% off! I like sales, don’t you? And by wearing these shirts, you’ll never know what seed you put in the mind of someone walking past you who’s still on Synthroid or any other T4 meds, and doesn’t know WHY they have depression, rising cholesterol, easy weight gain, the need for naps, etc. You”ll also find humorous bumper stickers which definitely spread the word.

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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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Ten reasons you may still feel bad: health is like a chocolate cake

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(This post has been updated to the present date and time! Enjoy!)

I frequently bake chocolate cake for birthdays in my family. Of course, part of it is so I can lick the beaters and bowl. **blush** But in my family, we are chocolate lovers. So any cake I bake is THE BEST cake in world.

Why? Because of the combination and/or amounts of several important ingredients that make any cake “great”… by anyone. Leaving out any of those specific ingredients, or putting in too little or too much, could result in a cake less than great.

And your health and feel-goods as a thyroid patient are like a good cake: the combination of ingredients and amounts that you have to get right.

Below are ten healthy “ingredients” to investigate to make sure the “chocolate cake of your life” is great!

1) INGREDIENT: The right amount of thyroid hormone medication

One of the most common mistakes made by patients and their doctors is simply not raising high enough to find the right amount. I have a friend who was stuck on 3 grains of Natural Desiccated Thyroid out of habit. Now 3 grains might be right for some, but it wasn’t for her–she continued to have hypothyroid symptoms out of habit. I finally convinced her to talk to her doctor. Labs showed her free T3 was just a few points over mid-range, and having a free T3 towards the top seems to work better for most. That will also push the TSH very low…and without a problem. So she did raise, and it finally did the trick. She now had the perfect chocolate cake of health!

2) INGREDIENT: Optimal B12

Sammy felt like she was doing great on her thyroid meds, but something was off. She had occasionally weakness, a tingling in her fingers, fatigue, and sometimes walking problems. Turns out her B12 levels were not optimal, which can be common for those undiagnosed hypothyroid or on T4-only. She got a B12 test, learned where patients are optimal, and corrected it.

3) INGREDIENT: Optimal iron

Did you know that like most nutrients, being “in range” has nothing to do with anything?? It’s “where” you fall that counts. And thyroid patients who’ve been undiagnosed, undertreated due to being held hostage to the TSH, or treated with T4-only, tend to acquire inadequate levels of iron. Symptoms can include fatigue, depression, weakness, achiness, breathlessness or others.  Learn all about iron and where iron is optimal.

4) INGREDIENT:  The right amount of stomach acid via ACV or lemon juice

Hypothyroid patients can have low hydrochloric (HCL) stomach acid levels. That not only contributes to acid reflux (yes, reflux can be because of LOW iron), it means you don’t absorb nutrients well (including low B12 and iron mentioned above). As a result, it’s crucial to give that acid back to yourself.  A tablespoon of Apple Cider Vinegar or lemon juice mixed in water and taken twice day helps many. Or try taking Betaine, which is HCL in pill form, or any other quality HCL or digestive product.

5) INGREDIENT: Optimal levels of B-vitamins

Did you know that when you become healthier due to the right thyroid treatment, your demand for B-vitamins can increase? Yessiree. B-vitamins along with CoQ10, help drive the production of your internal cellular energy. Though a variety of foods give B-vitamins, patients will often supplement with a good whole food B-vitamin or one brand or kind of their choice.

6) INGREDIENT: Avoidance of gluten

Now, patient experiences have revealed that not everyone needs to remove gluten from their diet. But a very high percentage of Hashimoto’s patients (the autoimmune version of thyroid disease) find they do a great deal better if they do. Why? Gluten can raise one’s antibodies, as well as damage your stomach lining and intestines, thus reducing absorption of many key nutrients. If you have Celiac disease, removal of gluten is also important.

7) INGREDIENT: Sex Hormone balance

When your thyroid or adrenals get out of balance, your sex hormones can follow suit, from estrogen dominance to low testosterone.  When estrogen dominance occurs, you can feel depression, fatigue, and sore breasts.  Low testosterone can equal lower energy and mood. That’s why many thyroid patients also treat their hormonal levels, if needed, to feel better.

8) INGREDIENT: Iodine plus other minerals

Turns out that not only are your thyroid hormones in need of iodine to even exist, patients have reported iodine supplementation to help them feel better. Women like using it to rid themselves of fibrocystic breast disease. We do recommend doing on Iodine Loading Test to first see if you need it, though. Most do, but some may not. Other minerals are important too, like magnesium, potassium, sodium and more.

9) INGREDIENT: A good doctor

Yes, we certainly know how hard it can be to find an informed and open-minded doctor. And because of that, some patients are forced to self-treat, and we don’t begrudge that choice at all. If you do want to find a better doctor, here’s a page to help you do so. It may not always be easy where you live, but can be possible.

10) INGREDIENT: Knowledge

This is where Stop the Thyroid Madness (STTM) comes into play. STTM is the flagship of patient experiences and wisdom, ready for you to absorb all its excellent information and regain your health and well-being again, besides help teach your doctor. There are now TWO STTM books to learn from, too.

P.S. My real chocolate cake: I think cake mixes are just as good as homemade. I use Devils Food Cake a lot, but have used all the varieties for fun. But the icing is ALWAYS homemade: cream one stick butter, add about 4 cups powdered sugar, 1/2 cup cocoa, then cream or half-n-half.  Shake in a liberal amount of sea salt. Add two tsp. vanilla.  Beat, beat.  Taste. Modify as needed. YUM. There are other great icings you can make! 

JanieSignature SEIZE THE WISDOM

** Come join the STTM Facebook page for daily inspiration and wisdom!

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I am pleased to announce labs designed by Stop the Thyroid Madness

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!)

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