thyroid disease tags

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As thyroid patients, we are continually seeking doctors who understand successful patient experience. It’s not always easy.  So when we do find a good doctor, we’re ecstatic. But little do we know the challenges a good doctor faces!  The following was sent to me by a progressive, open-minded MD, of whose name I have removed to protect him from his own medical board. Be appalled and amazed. I was.

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Janie, it is not infrequent that we are sent messages like this from Pharmacy Benefits Managers. Here is a typical letter with my reply.

Considerations for Your Review

1. Drug Safety Consideration: ARMOUR THYROID Use in Seniors  Our claims record suggests that your older patient is receiving ARMOUR THYROID. Thyroid hormones should be dosed cautiously in seniors due to a potential risk of cardiac effects. Desiccated thyroid products contain variable amounts of T3. T4 and other iodothyronine compounds. Because older patients have a high prevalence of occult
cardiac disease, the Beers criteria generally recommend transition to a safer alternative (e.g.. agents like levothyroxine with more standardized hormone content). Please consider the potential risks versus benefits of therapy for your patient.

Reference(s):
1. Thyroid Agents. In: McEvoy GK, ed. AHFS: Drug Information. Bethesda, MD: American Society of Health-System Pharmacists; 2008:Sec 68:36.04.
2. Pick DM et al. Updating the Beers Criteria for Potentially Inappropriate Medication Use in Older Adults. Archives of Internal Medicine. 2003; 163:2716-2724.
3. Semla TP et al. Geriatric Dosage Handbook. 13th ed. Hudson, OH: Lexi-Comp; 2007.

(And this brilliant doctor’s reply:)

Dear  xxxxxxx

Re: Armour Thyroid Products

I invite your attention to the P.I. (product information) in the PDR on levothyroxine (Synthroid). I quote:  PRECAUTIONS “Patients with underlying cardiovascular disease—Exercise caution when administering levothyroxine to patients with cardiovascular disorders and to the elderly in whom there is an increased risk of occult cardiac disease.”

DOSAGE AND ADMINISTRATION

“Caution should be exercised when administering SYNTHROID to patients with underlying cardiovascular disease, to the elderly, and to those with concomitant adrenal insufficiency (see PRECAUTIONS).”

I read your statement that says, “Desiccated thyroid products contain variable amounts of T3 and T4 and other idothyronine compounds.”  Forest Pharmaceuticals has stated their product is standardized as published in the PDR: “ One (1) grain or 60 mg of Armour contains by assay 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3).” I do not ever remember Armour Thyroid ever being recalled for stability or lack of standardization.

However, Synthroid and the other forms of levothyroxine have had significant problems.

SYNTHROID AND OTHER T4 PRODUCTS were subject to FDA NOTICE in the FEDERAL REGISTER: AUGUST 14, 1997 (VOL 62, NUMBER 157). These were the drugs that were not well standardized and were not stable. I quote from the report: “Some of the problems reported were the result of switching brands. However, other adverse events occurred when patients received a refill of a product on which they had been previously stable, indicating a lack of consistency in stability, potency, and bioavailability between different lots of tablets from the same manufacturer.”

Thank you for caring for the health of the patients receiving medications from your company. I request that you check your facts fully before issuing such flyers.

Respectfully,

xxxxxxxxx, M.D.

Cc: FOREST PHARMACEUTICALS

BRAVO TO THIS DOCTOR in the face of complete ignorance!!

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STTM HAS HIRED A PUBLICIST and YOUR HELP IS NEEDED!

Do you value what Stop the Thyroid Madness has given you??  Something has to be done to reach millions of individuals still lingering without a diagnosis due to the TSH, or suffering due to being on T4-only meds! You and I run into them DAILY and don’t even know it!  Or we have many family members in the TSH/T4 category. And the media does NOTHING about this scandal.  STTM has hired a publicist, and you can read about it here. But I can’t do this alone. If you value Stop the Thyroid Madness, please considering helping.

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TPA (Thyroid Patient Advocacy) STILL NEEDS YOU TO REGISTER 

Have you registered for the Counterexamples to T4-only?  So far, 1437 have, and Sheila Turner is determined to get that number to over 2000 at least. There were 900 participants on those flawed studies showing that T4/T3 combination worked no better than T4-only, and we have got to prove our point that this is wrong.  All you have to do is answer 3 very short questions.  http://www.tpa-uk.org.uk/register_of_counterexamples.php

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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.

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!

I confess that I hated my Chemistry class in high school, even if Mr. Bowen tried to make it interesting and favored the girls over the boys in class.  But lo and behold, one of those elements on the Periodic Table ended up having a significant role in all or our lives as thyroid patients: iodine.

Iodine can be found in every inch your body, but is especially prevalent in your thyroid, which makes it an interesting element for those of us with thyroid disease.  The active thyroid hormone T3 (triiodothyronine) is made up of three iodine molecules, and the storage hormone T4 (thyroxine) has four iodine molecules. In fact, without proper amounts of iodine, your thyroid wouldn’t even function well.

An optimal amount of iodine has also been shown to improve breast health, provide cancer protection, remove toxins like Bromide, fluoride, mercury etc…and in some cases, has helped thyroid patients either lower their dose, or even get off thyroid treatment. Thyroid patient Diana tells of getting off thyroid treatment due to iodine on the Stories of Others page.

***This Thursday evening on the Thyroid Patient Community Call on TalkShoe, we’ll have guest Stephanie Buist, owner of the Yahoo group Iodine and a 9-year thyroid cancer survivor who strongly feels iodine has been a huge factor.   We’ll explore how much iodine a person needs, the loading loading test, the best sources of iodine supplementation, whether you need iodine, as well as controversies with iodine use, including Hashimotos disease or bad reactions.  Times for the call are 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern. You can listen right on your computer, or call to talk directly to Stephanie and Janie. Join us!

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Sheila Turner of TPA-UK  (Thyroid Patient Advocacy-UK www.tpa-uk.org.uk) is starting the ball rolling on something very interesting:  they have contacted a lab in the UK who will do a qualitative analysis of the old Armour vs. the new reformulated Armour to get a breakdown of the ingredients, and potentially give us an idea WHAT is causing thyroid patients to have a return of their hypothyroid symptoms since Forest reformulated Armour in 2009.

However, says Sheila, this will cost in the region of £600 to £700 (approximately $1100).  Says Sheila, “If there are enough patients who are willing and able to help raise the funding required by giving whatever we can afford, we could finally get the answer as to which changes have been made in the new formula and whether this includes changes in the active (as some have suggested) and the inactive ingredients and put this baby to rest once and for all.”

You can contact Sheila at the above website and make a pledge.  As I write this, they have already have £100 pledged.

UPDATE: Stephanie above has agree to be the ‘Pledge and Money Collector’ for the lab work needed to analyze the old vs new Armour . She can be contacted at ladybugsandbees@sbcglobal.net

Before my thyroid disease of hypothyroidism was discovered, I had horrific and debilitating consequences from exercise or any activity.  You can read about it all here or even more detail in the Introduction of the patients-to-patients Stop the Thyroid Madness book.

When my so-called “borderline hypothyroid” was discovered by age 30, I thought whoo-hooo, I’ll finally get rid of this strange nightmare whenever I tried to do ANYTHING.  I was put on Synthroid and my anticipation for a better life was profound.

But my hope was dashed. Not only did my body continue to overreact to activity, it got worse over time.  Horribly worse.  Nearly twenty years after I had started on a T4-only medication, and was told by one doctor after another that my problem was not my thyroid, I was going to apply for social security disability.

But they were all dead wrong. Sure, turns out I have a form of Dysautonomia, a malfunction and overreaction of my autonomic nervous system, causing my body to far overreact to stress. But remaining hypothyroid, as we all do on the sucky t4-only medications, had made it far worse. And I proved it. When I switched to Armour desiccated thyroid in 2002 and raised it according to what patients have learned, a miracle occurred.  My severe autonomic reactions made an almost complete turnaround.

And my experience of change or improvement when it comes to other diseases or conditions has been shared by others.

Last week, I received an email from a man whose brother has MS–Multiple Sclerosis.  And though Armour has not taken his MS away, it allowed him to move from this wheelchair to a walker! That is impressive.

So I am left wondering:  what other conditions or diseases, which are unique in themselves, are worsened being undiagnosed thanks to the lousy TSH lab test or the inadequate treatment of Synthroid, Levoxyl, levothyroxine, Eltroxin and all other T4-only medications? It’s awful to think about it.

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