tsh tags

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!

The 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!

Last May, a very interesting article appeared in the May 2009 issue of the Journal of Clinical Endocrinology and Metabolism, titled For Some, L-Thyroxine Replacement Might Not Be Enough: A Genetic Rationale and presented by Endocrinologists in Bristol in the UK. It’s accompanied with an editorial by Endocrinologists Brian W. Kim and Antonio C. Bianco.

This is the same article referred to by Endocrinologist Dr. Gary Pepper on the last Thyroid Patient Community Call on Talkshoe.

Basically, the article states that a genetic variation in the enzyme that converts T4 to T3, deiodinase D2 (also called Type 2 Deiodinase, or 5′-Deiodinase), may be responsible for why so many thyroid patients don’t do well on Synthroid, Levoxyl, levothyroxine, etc, and in turn, do so much better on natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or the combined synthetic T4 and synthetic T3 (Cytomel).

In other words, where some may have a strongly functioning deiodinase D2 enzyme which converts T4 to the active T3 well, others may have a modified deiodinase D2 enzyme, causing less optimal conversion.

In the Editorial, the two Endos Kim and Bianco explain the reality of “polymorphism”–a condition in nature in which changes or variations occur, and in one patient from another, a change in the DNA.  As related to conversion of T4 to T3,  some thyroid patients have a less effective deiodinase D2 enzyme in the conversion of T4 to T3.  Specifically, there is a common variant of the gene, threonine (Thr) 92 alanine (Ala), and it results in decreased D2 enzymatic activity.

The study proposes that this alteration from polymorphism occurs in 16% of those studied, and concludes that the majority don’t have this problem, and thus, “most do fine on T4-only medications”. But 16% do have this problem and need the combined therapy of T4 with T3.

Bristol was also mentioning this reality in 2004 here, even if they thought it was as low as 5%.

As Dr. Pepper hinted, this study could do wonders to open the eyes of Endocrinologists about the use of desiccated thyroid, or at the very least, about combined hypothyroid treatment with synthetic T3 added to synthetic T4.  And I’m glad for that when so many patients have found Endocrinologists to be narrow-mindedly stuck on Synthroid or other T4-only thyroxine products.

Of course, informed thyroid patients know this is only a baby step in the right direction, even if a good one! So we’ll rejoice for this study, and watch for more progress from the medical community and Endocrinology in general. For example, saying that “most do fine on T4″ simply because they have may a non-variation might be proven wrong as physicians take the time to really look at those “fine” patients, especially as they age and symptoms of an inferior treatment do pop up. And though the combination of synthetic T3 with synthetic T4 definitely gives better results, thyroid patients who then moved to desiccated thyroid with it’s T4, T3, T2, T1 and calcitonin report even better results and clinical presentation!  We’ve also learned that the TSH lab test absolutely sucks when it comes to diagnosis and treatment.  Read TSH Why It’s Useless, or see even more detail in Chapter Four of the STTM book, titled Thyroid Stimulating Hooey.

And finally: do thyroid patients really believe that problems with T4-only treatment is simply due to a genetic abnormality or variation? Maybe. But isn’t it funny that a healthy human thyroid does NOT depend solely on conversion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the supplement Selenium helps with conversion, by the way, but has never stopped our first-hand knowledge that desiccated thyroid rocks!

Louis Neipris, M.D., a staff writer who has written many fine articles for myOptumHealth.com, recently wrote one article titled Adrenal Fatigue: Is it for real? It appeared on Upper Michigan News, TV 6 website on July 16th and is making the rounds on other sites. His answer to his own question?  “Not really”. He adds  “it’s not an accepted medical diagnosis.”

Oops.

Dr. Neipris, thyroid patients all over the world beg to differ, as do a growing body of colleagues in your profession. Adrenal fatigue, aka low cortisol, has been discovered on the back of a huge body of thyroid patients, wearing them down with  irritability, anxiety, shakiness, feeling dizzy or lightheadedness, sleep issues, sweating, salt craving, nausea in the face of stress, and a host of other symptoms unique to each individual with adrenal fatigue. My personal observation, as a thyroid patient activist, is that up to 50% of millions of thyroid patients all over the world, may have adrenal fatigue, or at the very least, a sluggish feedback loop.

Even worse, the widespread occurrence of adrenal fatigue, especially in thyroid patients, has caused problems when they try raising a far superior thyroid medication called desiccated thyroid. Because cortisol is needed to facilitate the move of thyroid hormones from the blood to the cells, the direct T3 in desiccated thyroid pools in the blood, causing low-cortisol-induced hyper symptoms like a pounding heartrate and irritability. The first-pass treatment then has to start with hydrocortisone like prescription Cortef from their doctors.

Why have such a large body of thyroid patients found themselves with adrenal fatigue and its low cortisol? It’s clear. The TSH lab test sucks, giving one a “normal” reading for years in spite of obvious clinical presentation of hypothyroid symptoms, and pushing one’s adrenals into overdrive with high cortisol and adrenaline to keep the patient going, and ultimately leading to adrenal fatigue.  On page 65 of the Stop the Thyroid Madness book, you’ll read about a 44 year old woman who went 15 years with a “normal” TSH result, in spite of obvious clinical presentation of hypothyroidism, and which led to her own low cortisol. This is not uncommon.

Second, the risk of adrenal fatigue is high due to the inadequate treatment of T4 medications like Synthroid, Levoxyl, levothyroxine, Eltroxin and other T4-only meds. They all leave patients with their own brand and intensity of lingering symptoms of a poor treatment, forcing the adrenals to kick in too long for many.

Even William Mck. Jeffries MD., who wrote the medical classic Safe Uses of Cortisol around 1984, understood the preponderance of adrenal fatigue even without the diagnosis of Addison’s, and the need for physiologic doses of cortisol treatment, or the amount needed by each individual.  And he would certainly be amazed by the explosion of adrenal fatigue that has occurred since then in thyroid patients thanks to the lousy TSH and synthetic T4-only ‘affaire de coeur’ with doctors.

Adrenal fatigue may not be an “accepted diagnosis” by many.  But medical professionals and doctors who think it’s not real or an acceptable diagnosis will have to face a huge body of patients globally who DO have real live adrenal fatigue. And adrenally-fatigued patients can get realllllly hostile and angry because of low cortisol, and be very impatient when you deny their reality.  (You’re going to see a lot of comments to this post which I highly suggest reading.)

P.S. Even desiccated thyroid like Naturethroid and the pre-reformulated Armour are not considered to be the standard of practice for treating hypothyroidism, yet thyroid patients all over the world are having lives CHANGED thanks to it.

***Want to be informed of my blog posts? Curious what’s on my mind? Use the Notifications to the left and right below the links.

***Read below why thyroid patients are not happy with Armour and switching to brand names like Naturethroid.

Jessica Terry is an 18 year old student at Washington State high school in the Bay Area who had years of problems which doctors couldn’t figure out: vomiting, diarrhea, weight loss and stomach pains.  Doctors said she had irritable bowel syndrome or colitis, and said her intestinal tissue was just fine according to slides.

Yet, she just knew that wasn’t correct.

So she took some of her own intestinal tissue to her Biomedical Problems class, and voila…she diagnosed her own problem:  granuloma, and specifically, Crohn’s disease, an inflammation of her intestines.

Sound familiar??

Yup, thyroid patients have had to do the exact same thing–self-diagnose– for almost ten years because of continuing symptoms of hypothyroidism which doctors have routinely dismissed, pooh-poohed or blamed on something else.  It’s all been a horrific, wide-reaching and damaging 50 year medical scandal by the medical establishment upon thyroid patients.

And why has this calamity occurred? Because doctors have always been hoodwinked by their medical school training, continuing education and Big-Pharma-financed-research in believing that T4-only thyroxine medications like Synthroid, Levoxyl, Levothyroxine, Eltroxin, et. al. were from God Almighty, and the TSH lab test was just as holy.

And thanks to thyroid patients around the world who had the gall to use the internet and join patient groups, we figured out it’s all because those medications and labwork have not worked, and what has worked. Additionally, it was patients who discovered they had adrenal fatigue and/or low ferritin and how to treat it, and patients who have succeeded in beginning a wave of change around the world in the treatment and diagnosis of hypothyroidism (except for the UK, who has gone backwards to the dark ages).

You can read Jessica’s story first reported in the Sammamish Reporter,  and only recently reported to a wider audience in the Bay Area News newspaper. She also spoke to a CNN affiliate.

Thanks to Kem on NTH for informing me of this news.

P.S. Do ya think that any newspapers or major news outlets like CNN are going to finally get what a huge story thyroid patients have given them?? We’re still waiting……

*Want to be informed of Janie’s blog posts? Curious what’s on her mind? Just use the Notification link to the bottom left of the links.