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

JanePauleyThough this post was originally written in 2009, the principles and information are still applicable today!

You 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 bipolar disorder (treated with lithium), and the autoimmune thyroid disease called Hashimoto’s (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 hashimoto’s disease for some, 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 Synthroid which promotes depression and other lingering symptoms). Many patients report a resolution of their depression with desiccated thyroid if they understood that it’s about “optimal” doses. See the green graphic here.

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 if taken in high doses, 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!

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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!

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Is Cellulose the real problem in desiccated thyroid meds for many?

Screen Shot 2015-08-05 at 12.53.55 PM(This blog post is updated to the current day and time. Enjoy!)

When Forest Labs reformulated Armour desiccated thyroid in early 2009, they stated they increased the filler Microcrystalline Cellulose, and decreased the Sucrose (sugar). And all of sudden, the tablets became impossible to do sublingually–a method so many of us loved and which seemed to give even more of a punch.

And we were left wondering in 2009 why they would change a particular quality (being able to do the tablets sublingually) that thyroid patients praised so heavily?  Positive opinion among patients for Forest Labs back then slipped several notches. (Forest Labs was bought out by Actavis in 2014)

But the real cuckoo’s nest for many thyroid patients still on Armour in 2009, who knew firsthand the life-changing benefits of natural desiccated thyroid, was a maddening return of serious hypo symptoms on the 2009 Armour with its increase in cellulose, and subsequent new stress on their adrenals, sooner…or later! You can read several horror stories in the comments of the post below, or go here.

So patients turned to other alternatives, which at the time was Naturethroid and Westhroid by RLC Labs. (Naturethroid stopped working as well in 2018)

So what has been the common thread in the most problematic desiccated thyroid products?

It has always been CELLULOSE, a plant fiber, and more commonly known by the trade name Avicel. And what does fiber do in your stomach? Inhibits absorption. Armour’s cellulose was raised, and bamm…problems.  Compounded desiccated thyroid, with cellulose as a filler, has been problematic for many patients with a return of hypo symptoms, especially if it was Methyl Cellulose, a larger particle size product. But some have even had problems with compounded containing Microcrystalline Cellulose, the smaller cellular product. And a certain body of patients even had problems with Naturethroid back then before it became scarce for awhile. And Naturethroid used cellulose as a filler.

Note: With all the complaints, Forest Labs did change something about Armour by mid–to-late 2010. Though it never returned to what it was before 2009, it did become a softer tablet and patients did better on it. But we certainly learned a big lesson about cellulose in our NDT pills..

Is this problem true with T3-only products?

Yes. Patients noted that generic T3 was far less effective than the brand name Cytomel (both Liothyronine Sodium)  And what filler is up to 70% in the generic T3?  CELLULOSE.  

What does literature say about the use of Cellulose as a filler in medications?

Plenty. Cellulose is from wood. Wood is fiber. And fiber in your gut affects absorption. From http://www.umm.edu/altmed/articles/fiber-000303.htm we get this:

* Dietary fiber has been reported to lower the blood levels and effectiveness of tricyclic antidepressant medications…Reduced dietary fiber intake increased the blood levels and improved symptoms in these patients.

* While fiber supplements may help to regulate blood sugar levels, they may also interfere with the absorption of anti-diabetic medications….Therefore, fiber supplements should not be taken at the same time as these medications.

* Taking soluble fiber such as psyllium with carbamazepine (Tegretol), a medication used to treat seizure disorders, may decrease the absorption and effectiveness of carbamazepine.

* Fiber in the form of pectin (from fruit) and oat bran reportedly reduces the body’s ability to absorb cholesterol-lowering medications known as “statins,”… and could lead to decreased effectiveness of these medications.

* Fiber supplements may reduce the body’s ability to absorb digoxin (Lanoxin), a medication used to regulate heart function.

* Clinical reports suggest that psyllium or other soluble fibers may lower lithium levels in the blood, reducing the effectiveness of this medication.

* In one clinical study, the fiber supplement guar gum reduced blood levels of penicillin.

Fast forward to the present

If you are using a compounded desiccated thyroid medication, it’s strongly recommended to request powdered acidophiles, also spelled acidophilus, as your filler.  One gal states her compounding pharmacy uses powdered Ginger (but beware of too much Ginger if you have Mitral Valve Prolapse. It can cause palps if you take too much–my experience).  Others might use powdered Vitamin C.  See what other fillers your compounder can offer.

Another possibility is Cellulase, an enzyme which helps the splitting and breakdown of cellulose, It’s found on most supplement websites.

JanieSignature SEIZE THE WISDOM

*Join the STTM Facebook page for information, tips and inspiration!

* Become an informed thyroid patient! //www.laughinggrapepublishing.com

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How are YOU doing with the current desiccated thyroid shortages?

Pills Spilled Shortages

(This post garnered a lot of attention, up to FIFTY comments just a few hours after it went up. People are very interested in sharing their experiences in coping with the shortages! See below and add your own.)

This year will go down in history as shockingly miserable for enlightened thyroid patients on natural desiccated thyroid.

First came a reformulation in the most popular brand–Armour by Forest Labs. Patients worldwide in groups and forums reported a serious return of their hypothyroid symptoms on this product. A huge disappointment.

Second came the production shutdown of the two generic makers of desiccated thyroid: Time Caps Labs and Major Pharmaceuticals. It’s the first step in the FDA’s compliance plan to corral all grandfathered-in drugs (drugs already in existence when the the FDA was created in 1938) and make them each prove the efficacy and safety of their medication via very expensive clinical trials.  i.e. over 110 years of safe and effective use of desiccated thyroid is not enough for the FDA?? We are still waiting to see the outcome of that plan with RLC  and Forest Labs.–the two who were actually in existence before 1938.

Third came demand being greater than supply and shortages. Because of informative patient websites like Stop the Thyroid Madness,  Sheila’s TPA-UK, Lyn’s ThyroidUK, Stephanie’s Natural Thyroid Choices, some areas of about.com (and other good websites I don’t mean to miss here), plus many fine patient forums and groups,  patients found out why they had continuing symptoms on T4 thyroxine, and demand for natural desiccated thyroid grew exponentially.

STTM then created a list of options for all thyroid patients until the shortages resolved themselves, and also created CDT (Coalition for Desiccated Thyroid) where patients could discuss alternatives in a supportive and factual atmosphere.

And we’ve seen some interesting experiences and comments:

The new Armour: One grain tabs started to appear on some pharmacy shelves the past month.  Other pharmacies have still been waiting.  Many patients appear to have switched to other alternatives, though. One gal still on it feels she is finding success by adding T3 to the amount of new Armour she is on.  Time will tell if patients can ever find success with the newly formulated Armour, and most feel it’s a huge loss.

Naturethroid and Westhroid: Patients reporting on their switch to either of RLC Lab’s two identical products report doing well, having to raise it slightly or lower it slightly, or just not liking them at all. Others have had a hard time finding it on their pharmacy shelves, but have been seeing some appear in the last few weeks.

Erfa’s Thyroid from Canada: When it became clear that the FDA was allowing this excellent product to be shipped to patients, many switched and had their prescriptions faxed to a Canadian pharmacy. Prices at many of those pharmacy websites were doubled after prescriptions started to come in from the US. Most patient who stuck with it seem to love it, reporting you can do it sublingually, as well. A few haven’t been impressed, but were finding their former success by raising it.

Compounded desiccated thyroid: In spite of being a more expensive option, some patients found success with this. Others learned they preferred the filler to be Acidophiles.  If not the latter, Microcrystalline Cellulose was preferred over Methyl Cellulose–the latter which appeared to lessen the effectiveness of the compounded thyroid.

Synthetic T4 and Synthetic T3: some patients switched back to the synthetic combination, but many report that it hasn’t been as effective as desiccated thyroid was.

Other options: Patients moved to OTC products like Nutri-Meds, etc, which can be much weaker. Others sought desiccated thyroid from other countries and have found success.

So I’d like to hear from all of you.   Did you go back to synthetic T4?  What desiccated thyroid did you switch to? What worked and why? What didn’t work for you and why?  What product do you hope to switch to once you run out of your current meds?

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Is there a genetic reason many of us do lousy on T4?

deiodinase2Last 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!

10 replies