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The unsung heroes of this thyroid patient movement

shakinghands1Let me tell you, there are a LOT of individuals–those I know and those I don’t–who give their blood, sweat and tears to help thyroid patients with feedback and information to help them feel better in their treatment, and with no notoriety that I or a few others get.   i.e they do what they do without a huge or far-reaching website like STTM, or a well-known blog, or a popular book, or other ways a few of us get well-known.

And in my mind, these individuals deserve praise and recognition. They are just as important in their direct one-on-one influence and helpfulness as those of us who gained public recognition.

There are many who voluntarily helped others in the last few years who aren’t as active anymore, but still deserve praise.

And there are many other individuals who own, moderate, or give helpful feedback to patients on forums and yahoo groups I could mention, but I don’t know their names or am just drawing a distracted holiday blank.  I also noticed several thyroid cancer groups.

So, if you want to recognize an individual who has helped you and others but is less publicly well known, use the Comments below and give 1) their name, 2) what group or forum if applicable, and 3) specifically how they helped you on your path in finding a much better thyroid treatment protocol and good health.

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Suffering on Synthroid: imagine how horrific it was before the internet

Elizabeth Alexander 1959(Though this post was originally written in 2009, it has been updated to the current day and time and still applies!)

I think back about my mother.

At age twenty-one in 1939, she had most of her thyroid removed due to Graves disease and hyperthyroidism. Because a small part remained, hyper set in once again by 1960 complete with bugged eyes.

So Radioactive Iodine I-131 was the next step to once-and-for-all annihilate the thyroid and hyperthyroid symptoms.  Not long after, as her thyroid hormone levels fell, she was one of the early victims of the “new and modern” T4-only medication called Synthroid.

And all hell broke loose.

Depression enveloped her everyday life—one of her worst lingering symptoms of hypothyroidism due to the shoddy treatment of a T4-only med. I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

Why all the counseling appointments? You can imagine that the doctor had no clue that her problems was being on Synthroid with nothing more than T4-only. No direct T3….something which a brain needs.

The last resort–Electric Shock Treatment

By 1963, and right before President Kennedy was shot, she submitted herself to Electric Shock Treatment in a futile effort to control her depression.  What a crock.  She was never again the bright and quick-witted woman I remembered as a younger child. Her brain was fried and she had a new dull flat reaction to life.

And for the rest of her life, she lived on her antidepressant/anti-anxiety med Elavil and had daily constant naps, weight gain, rising cholesterol, dry hair, heart surgery, stiff joints, brain fog and inability to stand on her feet long–her own manifestation of lingering symptoms while on the lousy thyroxine.  Additionally, her long-term use of antidepressants made her emotions completely flat…..

And she did the T4-only horror show…all…by…herself. No internet,  no patient groups and forums, no Stop the Thyroid Madness website, blog or book,  no good doc, no thyroid Facebook or Twitter groups, no other good thyroid books or websites. Nada. I came along as a Thyroid Patient Activist too late for my mother, who died in 2003.

It makes me shudder thinking of that lonely hell.

But then again, it’s not just in the far past: it happened to her only daughter, me, for nearly 20 years. Complete lonely hell of my own with intense and disabling Dysautonomia (an overreaction of my autonomic nervous system) induced by my continued hypo state while on Synthroid and later Levoxyl.

And today, because the mass media or any media personality refuses to speak the truth of the 55 year scandal of T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of individuals still suffer. How stupid can they get.

This is a scandal that has effected a huge mass of individuals globally, past and present,  including those today who STILL linger with undiagnosed hypothyroidism thanks to the worthless TSH lab test or lingering hypo on the lousy T4-only medications. And all the above when we, as patients, have learned a far better way to treat our thyroid problems

Did you have relatives like my own Mom (who died in 2003) who lived the T4-only scandal alone?  Use the Comment form to tell us about them.  Have YOU suffered from a T4 med? Report it to the FDA here.

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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!

officedoor2

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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Australia is adding iodine to their bread

kangarooOn the heels of an excellent Thyroid Patient STTM Community Call on iodine with guest Stephanie Buist (see below), it was just announced by the Food Standards Authority of Australia and New Zealand (FSANZ) that Australia will add the micronutrient iodine to bread. New Zealand already started that practice in September of last year.

The announcement mentions the importance of iodine to thyroid functioning, as well as for infant brain and nervous system, both during and after pregnancy.  For the latter, it states “Not having enough iodine during pregnancy and early childhood can cause developmental delay and lead to reductions in mental performance. This damage prior to 2-3 years of age is irreversible.”

Apparently, the  soils of Australia and New Zealand are not too prolific in iodine, and patient levels have been revealing that fact for decades. But Stephanie Buist, the friendly and knowledgeable owner of the yahoo group Iodine, as well as a thyroid cancer survivor, states that even most US soils are becoming depleted.  It’s not just a problem of the northern US “goiter belt”, Europe or Africa anymore.

The importance of iodine goes even farther than thyroid functioning, pregnancy and infant brain development. It has a key role in breast health, your immune system, bones, estrogen metabolism, lung health, eyes, and cancer prevention. The iodine4health website lists many benefits as well as areas not understood yet.

How much do we need? Experts like Abraham, Flechas and Brownstein will emphatically state that we probably need more than is recommended.  At least 50 mg of iodine may be necessary for awhile to bring your levels back up to healthy amounts, besides stop the the side effects of iodine on hashimotos disease.  i.e. thinking you are getting enough iodine naturally from foods, or even from natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or compounded, may not be so.

How do you find out if you are iodine deficient? Stephanie stated on the Community Call that the majority of folks probably are deficient. But if you want to be sure, you can do the Iodine Loading Test.

What are good iodine supplements? Lugols is an liquid variety, and my husband and I personally use it in our morning juice or Emergen C (my husband uses Emergen C in water since he’s diabetic, and it’s a good way for him to get his Vitamin C).   In pill form is Iodoral, developed by Abraham.  You can google either and find some website sources. Also good to take with iodine supplementation is magnesium, Vitamin C, and selenium, which helps with the detox effects.

You can listen to the recording of Stephanie’s and my conversion on iodine by going to the link below for Episode 5 of the Thyroid Patient STTM Community Call. (Yes, I will correct the skipping you hear in my voice next time.)

Read Diana’s experience with iodine helping her get off desiccated thyroid. Not something we can all do, but it happened to her!

6 replies