Please note: Dr. Lowe is NOT an MD or DO who see’s patients and can prescribe. He’s a thyroid and fibro “researcher” with good knowledge about T3,  fibro, metabolism, supplements etc. Many questions have been coming in which are already answered on STTM, or are more targeted to a practicing physician, not a researcher. FYI.

On the heels of an informative and wonderful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thursday, January 14th.  Join us for Part 2!

Dr. Lowe is a fibromyalgia, thyroid, and metabolism researcher who has always been such a champion for better diagnosis and treatment in thyroid patients. He is Editor-in-Chief of the open access journal www.thyroidscience.com as well as his own www.drlowe.com

And this time, Dr. Lowe is going to spend more time answering  your specific questions. Check out his websites above to get an idea what his expertise is, which includes the use of T3,  Hashimotos autoimmune thyroid disease, iodine, fibromyalgia, the tyranny of the TSH lab test, good supplements, the FDA, and more.

So here’s your chance: think of one or two questions you’d like to hear him answer. Please, if you have more more than two,  narrow them down to the two most important, and keep them brief.  No exceptions. Two max only, and brief.  Then use the Comments below to post them.  Be sure and check out if your questions have already been asked in other comments.

I’ll be collecting the questions ahead of time and will let him preview them. He wants to give you his best.

TIPS ABOUT TALKSHOE: Some reported being booted off and having to quickly rejoin. One step that may help is to download the Talk Shoe Live Pro ahead of time (takes 25 minutes for some) and use that software during the call, since it gives you far more stability.  Also, make SURE you have everything else closed and/or not running on your computer at the same time you are in the Talkshoe call. I will also be chatting with Talkshoe support and will get more ideas.

Also, don’t wait until the call occurs to mention your question. We found it difficult to try collecting them on the Chat. Ask now!!

Yes, you can also call in live during the Call, but it’s good to first let me know your question here.

And finally, at a certain point of those who join (after 300 on chat), Talkshoe participants are automatically unable to post on the chat. You can listen, but no chatting. So if you want to chat, join as soon as the Call opens up, which is 15 minutes before the actual audio begins. Times for the audio are 9 pm Eastern, 8 pm Central, 7 Mountain, and 6 pm Pacific.

The Stop the Thyroid Madness Talkshoe page: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

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See the blog post below those about Lowe for a very insightful Guest Blog Post by Amy about her role as an Undercover Thyroid Advocate. Below that, you can read how I was wrong about what it was like to be thyroidless, and several great comments.

This coming Thursday, January 7th, Dr. John C. Lowe DC,

Dr. Lowe has been highly respected by thyroid patients for years for the excellent information he has disseminated about better thyroid treatment on his website drlowe.com.  In fact, he’s one of a handful of doctors that I mention with gratitude in the Acknowledgements of the Stop the Thyroid Madness book.  His website and wise understanding played an empowering and self-educating role in the early movement by patients for better thyroid treatment with desiccated thyroid and better labs.  You can read his own written biography here.

Mark your calender and set your cell phone alarm: the Community Call starts at 9 pm Eastern, 8 pm Central, 7 pm Mountain and 6 pm Pacific.  You can log on anytime within 15 minutes before the call starts and participate in the Chat box. That same box will be right there during the entire call.

The entire live audio chat with Janie and Dr. Lowe will come right on your computer, so remember to turn your audio up.

Additionally, those who log in can also choose to call in and ask Dr. Lowe direct question. Don’t miss this great opportunity!

The Stop the Thyroid Madness Talkshoe page: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

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See the blog post below for a very insightful Guest Blog Post by Amy about her role as an Undercover Thyroid Advocate. Below that, you can read how I was wrong about what it was like to be thyroidless, and several great comments.

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.

Where are these people? They are those who own and/or moderate and/or contribute often to thyroid forums, such as Deborah and her mods on Real Thyroid Help, and Pam and others on Low Carb Friends.

For helpful Yahoo groups, there is Linda aka Topper of The Thyroid Support Group,  Sam and her mod Darla of the Thyroidless group, Valerie Taylor and her excellent and patient mods Diane and birrdyy of NTH Adrenals and RT3/T3 group,  Darla, Linda, Meleese and Pat of NTH,  Jan Nathan with her Texas group plus other state groups.

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.

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.  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 as well as the TSH lab test.  I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

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.

And she did the T4-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 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.

Also below, read about Jane Pauley and the health issues that make you wonder, since they can all be connected to a thyroid problem, either undiagnosed or untreated.  Below that, you’ll see posts about Oprah, Reverse T3, the problem of cellulose in our meds, the desiccated thyroid shortages, and more.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. A card will be included, and the book will be in an envelope with a red bow!! Save money the more you buy!

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.

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).

On 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!

Here’s a chance to ask questions about shortages of desiccated thyroid, options to talk to your doctor about to treat your hypothyroidism during this shortage period, how to find a good doctor, and more.

Times are 7 pm Pacific, 8 pm Mountain, 9 pm Central and 10 pm Eastern. Just go here: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

You can make two choices: just listen to the Audio of the podcast talk show, or call in. Phone number will be right on the bottom.  You can register with Talk Shoe and pick a user name, or come in as a Guest.

You’ll also note a chat box.  The handy and beautiful gals Darla and Diane will usually be there to guide you. If you want to line up to talk in the queue, you’ll be asked the topic of your conversation in the chat box.  As you wait for me to get to you, you’ll be able to hear the talk through your phone, and will need to MUTE your computer sound.

You’ll be seeing guests join us, as well, so watch for each Community Call announcement on the above link. And even without a scheduled guest, you just never know who is going to pop in and chat.

Come join us! And remember: we are all just patients chatting with patients. This is not to replace the relationship with your doctor in your treatment or for treatment advice. Stick with your doctor for that.

*Want to be informed of these blog posts? Curious what’s on Janie’s mind? Just use the Notifications on the left below the links.

* STTM t-shirts are half price! I love sales!

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)

And since thyroid hormones are primarily composed of iodine, thyroid patients are listening to and questioning the use of iodine supplementation. Yahoo Groups has an excellent iodine group now led by Stephanie, where you can ask questions and decide for yourself. Also, if you google “iodine”, you’ll find much to read.

But thyroid patient Mike Lawson came up with some very interesting facts this week about iodine in desiccated thyroid–just one more reason to consider using Armour, Naturethroid, Westhroid or other desiccated thyroid products! He figured out the below:

T3 = C15H12I3NO4 = molar mass of 650.9776
T4 = C15H11I4NO4 = molar mass of 776.87

So, each grain of Armour has 30.20325 mcg iodine. In other words, each
grain of Armour has 1/5 the RDA of iodine (150 mcg).

Very interesting facts, Mike! Sure, some thyroid patients feel they need more than what desiccated thyroid offers. But it’s a good start when so many individuals feel their own iodine levels are too low, and need help, especially those who have had to deal with thyroid or breast cancer, or have a family history of it.