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The agonies of being thyroidless

Thyroid is Missing From Human Throat
There was a time when I thought being hypo without a thyroid was really no different than being hypo with one.  Hypo is hypo.

But I was wrong. There really is a difference in our journeys–even if we both end up with hypothyroidism—and four strong ones:

  1. It’s no picnic to lose one’s thyroid. Surgical removal, called a thyroidectomy,  can come with neck soreness, loss of one’s voice, and other complications. including the loss of parathyroids.  Treatment with RAI, or Iodine 1-131 to kill the thyroid, has it’s own lifelong side effects, including gastrointestinal issues, parotid salivary gland problems, and more.  A good website about the controversy of RAI is atomicwomen.org.
  2. The stress of surgery and/or RAI can do a number on one’s adrenals. I suspect that there is a high percentage of those who had surgery and/or RAI who also have adrenal fatigue with it’s nightmarish side effects, whether simply from the physical stress of removal and/or treatment, or having a Synthroid, T4-only obsessed doctor.  Being on T4 is the number one predictor of adrenal fatigue.
  3. Some have a unique anguish about their vulnerability. No one can live without a thyroid.  And that thought with the absolute lifelong dependency on thyroid meds is not a comfortable state.
  4. Life long regret can be huge. Many patients came to realize, after removal, that they may not have needed the removal at all if they had known about the fallacy of the TSH lab test, or the idiocy of T4-only meds, or potential benefits of iodine, or natural desiccated thyroid like Naturethroid, compounded, or Erfa Thyroid.

Read the latest personal and gut-wrenching blog post by thyroid cancer Stephanie Buist, who is thyroidless after treatment for thyroid cancer nearly 10 years ago.  Also see the Talk to Others link below to find the Thyroidless yahoo group.

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Curious what’s going on with Naturethroid or Westhroid production and availability? RLC Labs has a Patient Information Line you can always call for the latest information on Naturethroid and Westhroid availability: 877-600-4752.

Want to write a post for the STTM blog?? Beginning in 2010, I will be reviewing and accepting “thyroid patient guest posts” on the STTM blog in between my own. You can read about it here: www.stopthethyroidmadness.com/writing-a-guest-blog-post-on-sttm/

Want to honor someone who has helped you?? See the blog post below and thank someone.

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  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.

Jane Pauley: hives, depression & bipolar may be more connected to a poorly diagnosed and treated thyroid condition?

JanePauleyYou might have already known about her, but it was only a few days ago when I found out that the effervescent Jane Pauley, former host of the The Today Show and Dateline NBC, has had certain medical struggles in her lifetime. They have included hives (treated with steroids), depression (treated with an anti-depressant), a bip0lar disorder (treated with lithium), and the autoimmune thyroid disease called Hashimotos (treated with Levoxyl).

Hives are sudden small raised bumps which can mass into patches, and are often itchy and miserable.  Bipolar, also called Manic Depressive Disorder, involves swings between extreme mania (excited, energetic) followed by depression (extreme sadness or lowered response to life).

And all the above four issues made me pause.  Consider the following:

1. Hives have not only been linked to hashimotos disease, they have both been successfully treated with the most brilliant medication for hypothyroidism ever created: natural desiccated thyroid. That healing connection was revealed by the beloved Dr. David Derry of Canada here.  Hives is also mentioned as a lingering hypothyroid symptom while on T4 meds which went away with desiccated thyroid.

2) Depression is all too common for those with undiagnosed hypothyroidism (thanks to the lousy TSH lab test) or undertreated thyroid disease (thanks to the lousy T4-only meds like Levoxyl which promotes depression and other lingering symptoms). Many patients report a resolution of their depression with desiccated thyroid.

3) Bi-polar can often be a misdiagnosis for Hashimotos disease, since the latter can cause the same swings. Even without Hashi’s, bipolar and other mental health issues can be a common manifestation of low cortisol aka adrenal fatigue, also caused by undiagnosed hypo because of the TSH, or undertreated hypothyroidism with T4.  At the very least, bipolar can be a common manifestation of a hypothalamus-pituitary–adrenals (HPA) axis dysregulation, again common with those undiagnosed or undertreated hypothyroidism.

4) Lithium, ironically, is a known cause of hypothyroidism, only making one’s thyroid situation worse, as well as promoting potential adrenal fatigue and low cortisol.

Now granted, Jane’s big four of hives, depression, bipolar, and thyroid disease could be coincidental.  But there’s so much connection in one way or another between them that you are left wondering if she’s been a victim of misdiagnosis and undertreatment just like hundreds of millions of us thanks to labs and medications which do not work. And she may need a good doctor to be reevaluated, besides put on desiccated thyroid and discover what patients have learned about better treatment.

And on another note: I fear it’s going to take someone just as powerful, and as stricken with health issues which could be related,  as Jane Pauley is, to FINALLY break open the profound and destructive media silence about this scandal of thyroid treatment diagnosis and treatment which has left hundreds of millions SICK with profound stories,  and is the very reason Stop the Thyroid Madness exists. Do we dare hope? We’ll see.

Do you have a similar story of mental health issues that ended up being connected to your thyroid and/or adrenal state? Use the Comment form and let’s talk. Who knows–maybe Jane will see this, ponder, and become far better educated like we’ve had to become!

*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!


  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.

Oprah leaves her show behind in 2011, and also leaves millions of thyroid patients in the dust

opraharmsupThe news this morning about Oprah made me pause.

Yes, it’s being announced today that there will be no more Oprah Winfrey Show on CBS after Fall of next year.  She’s saying goodbye. And the rumor is that she will move her talk show to The Oprah Winfrey Network, which replaces the Discovery Health Channel. We’ll see when she formally announces it today on her show.

But the change sure does shine a bright spotlight on a colossal and complete failure by Oprah and The Oprah Winfrey Show for hundreds of millions of thyroid patients. Though she had her own bout with thyroid disease (and may still be dealing with it when you consider her weight issues), we all winced a year ago when she stated that a month long Hawaiian vacation and eating fresh foods with soy milk (a goitrogen) were a great way to treat her thyroid condition. Yikes.   We equally squirmed in our seats when Dr. Christiane Northrup made the comment that our thyroid problems were due to an “energy blockage in the throat region, the result of a lifetime of ’swallowing’ words one is aching to say.” Double yikes.

And since then, we have watched nothing, zilch, zero from Oprah and The Opray Winfrey Show about a horrendous 55-year medical scandal of thyroid treatment that has negatively affected the lives of hundreds of millions of thyroid patients worldwide. T4-only meds like Synthroid, the darling medication of the medical community for hypothyroidism treatment, has left hundreds of millions sick.  The TSH lab test has equally sent us to hell.  Because we have been forced to live with continuing symptoms of hypothyroidism, we’ve endured much more testing and have been put on many other medications to bandaid our continuing symptoms. And a majority of us have had to deal with the additional burden of adrenal fatigue thanks to all the above.

It’s been hell, Oprah. But you never listened.  So for me personally, I could care less what you do now. You’ve let millions of us down.

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On a far better note:  Last night’s Thyroid Patient Community Call on Talkshoe was excellent. From thyroid/adrenal patient Valerie Taylor, who is absolutely one of the most knowledgeable patients in the world about adrenals and RT3, we gained good information how it raises its ugly head when you have high or low cortisol, low B12, low ferritin and other untreated issues, and how to treat it. You can go back to Talkshoe and listen to the broadcast, which was Episode 7.  See my blog post right below this. As far as future Talkshoe Community Calls: they will always be announced here first.

Below that, you’ll read how cellulose as a filler just may be a huge problem in natural desiccated thyroid meds. But we are also discovering that a good desiccated thyroid like Naturethroid, even with its cellulose, can seem even worse if we have undiscovered and untreated issues like low B12, low Vit. A, low ferritin, low Vit. D and other conditions common with hypothyroidism.  Make sure you have tested for these.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. All the work is done for you!


  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.

Reverse T3–do you have this problem in excess? Let’s talk!

RT3 CloggedYes, we’ve all heard about T4 (the thyroid storage hormone) and T3 (the active thyroid hormone which rids us of hypothyroid symptoms). We’ve learned that the body not only converts T4 to T3, it also provides some of  T3 directly. The latter fact is why patients have found natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, etc. to be a far better treatment for hypothyroidism, besides the T2, T1 and calcitonin you’ll also find in desiccated thyroid–just like your own thyroid would be making.

But in every individual, a thyroid also converts T4 to the inactive RT3 (reverse T3) as a way to clear out excess T4 that the body doesn’t need.  It’s natural and necessary. It will especially happen if you go through surgery or a diet.

Unfortunately, many thyroid patients make far too much RT3, and patients have been making cutting edge discoveries about this fact and how to treat it with their doctors.  High levels of RT3 can be found if you have high cortisol, low cortisol, low ferritin, low B12 and other undiscovered and untreated underlying issues that can go hand-in-hand with being hypothyroid.

Why is a high level of RT3 is problem? That excess RT3 is making itself lazily comfortable on your cell receptors, preventing T3 from gaining access to your body.  It becomes like a clogged up drain to your body. So you stay hypo and symptomatic, in spite of seemingly normal labwork.

This coming THURSDAY, NOVEMBER 19th (tomorrow as I write this) on the TALKSHOE THYROID PATIENT COMMUNITY CALL, we’re going to talk about the Reverse T3 problem with thyroid patient advocate Valerie Taylor. She not only owns the NTH Adrenals group (and is considered the most knowledgeable patient on adrenal fatigue in the world), she also created the RT3/T3  group on Yahoo, which you will find on the Talk To Others page.

We’ll talk about excess RT3, symptoms that can go along with it, how to do labwork to determine if you have this problem, how to treat it with T3-only, and more. There’s a Chat Box you can participate in while the show is going on. Audio will come directly out of your computer, and you can call in and ask Valerie or Janie a question. Times are 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern.

Want to read more? Thyroid patient Nick Foot, who also moderates the RT3/T3 group, has created an excellent Question and Answer RT3 website. This will make you even more informed before this Talkshoe event. Note that the website is still work-in-progress, so expect to see more as he works on it.

For those with the Stop the Thyroid Madness book, there is also more good detail in Chapter 12 called T3 is the Star of the Show, page 155. This is all good information to take into your doctor’s office.

Update: cellulose in our desiccated thyroid meds may be much more of a problem than we ever imagined. See my blog post below.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. All the work is done for you!


  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.

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.


  • Hip hip!! STTM has new products to help spread the word, here. Great BUMPER STICKERS, too, here. Spread the word--YOU may make a difference in someone’s life.
  • Check out the NEW REVISED patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need to understand all your best options for thy­roid treat­ment? Go here.
  • Want to keep track of these "fringe website" blog posts? ;-) Curious what’s on Janie’s mind? Use the Blog Notification on the lower left of the links. or use an RSS Feed.