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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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Thyroid patients report despising their Endocrinologists—but here’s one you might just love!

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I once cracked open an egg to find it had TWO shells.  And that oddity is equivalent to finding an Endocrinologist who supports the use of natural desiccated thyroid. 

Voila!! ~~ you can listen and talk to an Endo who does just that on this Thursday evening’s popular THYROID PATIENT COMMUNITY CALL on TalkShoe.

His name is Dr. Gary Pepper, Board Certified by the American Boards of Internal Medicine, and Endocrinology and Metabolism and editor-in-chief of metabolism.com.  Besides serving many years in distinguished leadership positions, he was selected as one of the top 100 physicians in New York City by New York Magazine and is also a featured expert with CNBC and ivillage on topics of diabetes and endocrinology. He states:  Almost daily I reread the words of Sir William Osler: “It’s often more important to know what sort of person this disease has than to know what disease the person has.”

i.e. this is one of a rare but growing breed of doctors who supports what we as thyroid patients already know–that desiccated thyroid is a five-star hypothyroid treatment and T4-only is about as effective as a doughnut diet for most. And lo and behold,  Dr. Pepper is an Endocrinologist! Of course, I can give no guarantees how he is as a doctor in his own office, but I do appreciate his understanding that T4-only treatment may not be the best way to treat hypo.

Join us this Thursday evening, 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern by clicking on the first link above titled Thyroid Patient Community Call.  When on that page, you’ll also see the exact day and time left before the call. You’ll be able to listen to the call right on your computer, or you can dial in and listen on your phone. There is also an option to talk one-on-one live with Dr. Pepper and Janie.

And remember: neither I or Dr. Pepper can offer personal medical advice or provide individual specific counseling. Those are between you and your personal physician.

***P.S.  PharmaTimes this month reported that this quarter’s sales of  Synthroid (levothyroxine) were up 3.7% to $134 million by Abbott Labs. Sad for most of those patients. If you know of someone who has been put on a T4 med, send them here: www.stopthethyroidmadness.com/t4-only-meds-dont-work or to the audio page here: www.stopthethyroidmadness.com/audio-shorts (third one down).

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Two topics: Let’s talk iodine, plus a UK lab will analyze Armour, says Sheila of TPA-UK!

iodine_atomI confess that I hated my Chemistry class in high school, even if Mr. Bowen tried to make it interesting and favored the girls over the boys in class.  But lo and behold, one of those elements on the Periodic Table ended up having a significant role in all or our lives as thyroid patients: iodine.

Iodine can be found in every inch your body, but is especially prevalent in your thyroid, which makes it an interesting element for those of us with thyroid disease.  The active thyroid hormone T3 (triiodothyronine) is made up of three iodine molecules, and the storage hormone T4 (thyroxine) has four iodine molecules. In fact, without proper amounts of iodine, your thyroid wouldn’t even function well.

An optimal amount of iodine has also been shown to improve breast health, provide cancer protection, remove toxins like Bromide, fluoride, mercury etc…and in some cases, has helped thyroid patients either lower their dose, or even get off thyroid treatment. Thyroid patient Diana tells of getting off thyroid treatment due to iodine on the Stories of Others page.

***This Thursday evening on the Thyroid Patient Community Call on TalkShoe, we’ll have guest Stephanie Buist, owner of the Yahoo group Iodine and a 9-year thyroid cancer survivor who strongly feels iodine has been a huge factor.   We’ll explore how much iodine a person needs, the loading loading test, the best sources of iodine supplementation, whether you need iodine, as well as controversies with iodine use, including Hashimotos disease or bad reactions.  Times for the call are 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern. You can listen right on your computer, or call to talk directly to Stephanie and Janie. Join us!

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ArmourtabletsUGH-1Sheila Turner of TPA-UK  (Thyroid Patient Advocacy-UK www.tpa-uk.org.uk) is starting the ball rolling on something very interesting:  they have contacted a lab in the UK who will do a qualitative analysis of the old Armour vs. the new reformulated Armour to get a breakdown of the ingredients, and potentially give us an idea WHAT is causing thyroid patients to have a return of their hypothyroid symptoms since Forest reformulated Armour in 2009.

However, says Sheila, this will cost in the region of £600 to £700 (approximately $1100).  Says Sheila, “If there are enough patients who are willing and able to help raise the funding required by giving whatever we can afford, we could finally get the answer as to which changes have been made in the new formula and whether this includes changes in the active (as some have suggested) and the inactive ingredients and put this baby to rest once and for all.”

You can contact Sheila at the above website and make a pledge.  As I write this, they have already have £100 pledged.

UPDATE: Stephanie above has agree to be the ‘Pledge and Money Collector’ for the lab work needed to analyze the old vs new Armour . She can be contacted at ladybugsandbees@sbcglobal.net

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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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Tips on how to do desiccated thyroid sublingually

Though this was originally posted in 2009, it’s been updated to the present day and time!

The brand of Natural Desiccated Thyroid called Armour used to be easy to do sublingually, even if the official line was they didn’t make it that way. That means letting it dissolve under the tongue which can potentially make its way to the sublingual gland under the bottom of the mouth and more directly to the cells.

And patients liked that sublingual ability with Armour.  It allowed them to work around the problem of swallowing desiccated thyroid several hours from having swallowed iron, estrogen or calcium–all which can bind ‘some’ of the thyroid hormones in your stomach.

It also helped those with digestive issues, since some of it may be bypassing the stomach.

But with the first newly formulated Armour in 2009, it became difficult. The pill became harder with less dextrose and more cellulose.  It now fell into the ranks of all other desiccated thyroid pills, including Naturethroid and other good brands, as a more dense tablet.

Tips from patients on how to do sublingual

Even for those NDT brands which are made quite hard, below are tips from patients on how to continue doing  desiccated thyroid sublingually. Let your doc know, too.

1) Some are adding a tiny touch of the contents of a Pixie Stix under their tongue. It’s flavored sugar in a straw, and the sugar seems to help the tablet dissolve sublingually through tissues under the tongue.

2) If you are using sublingual B12 lozenges to treat low B12, try adding it under the tongue with your desiccated thyroid. The action of the sublingual lozenge seems to move over to the thyroid tablet, say some.

3) Swish warm water in your mouth before you place the tablet under your tongue.

4) Crunch up the desiccated thyroid tablet before any of the above and before placing it all under your tongue.

Can’t I just swallow my NDT?

Definitely. You’ll just have to make sure you don’t also have a stomach full of iron rich foods, calcium or estrogen. Generally, it’s best to take your tablet away from any of the former, such as a two hour difference at the minimum.

*Have more sublingual ideas or experiences? Share it in the Comments section.

*Want to be informed of my blog posts? Curious what’s on my mind? Just use the Notifications to the bottom right of the links.

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