• +Audience
• depression
• hypothyroidism
• Media

As informed thyroid patients, we’ve all been talking about it in patient groups, blog posts, and amongst each other.  About.com’s Mary Shomon did a good write up in her blog post, and you can see one of several different Facebook group conversations here as well as the article and our comments after it, here.

And if you haven’t caught up with it all yet, here is a summary of the extremely sad misinformation and implications contained in an article of the latest issue in the Good Housekeeping magazine:

1. that the first step to diagnosing your potential hypothyroid problem is the use of the thyroid-stimulating hormone (TSH) lab test  (a test which informed patients worldwide exclaim has left them either undiagnosed for years or undertreated! http://www.stopthethyroidmadness.com/tsh-why-its-useless)
2. that your TSH may only point to hypothyroidism if it comes back at 10 or higher (Hogwash!! say informed thyroid patients, who have been hypothyroid with a TSH in the two’s! See above.)
3. that the only other tests you may need are the T4 and antibodies  (which informed patients have found is only PART of what you need, which needs to include the very important  free T3!  http://www.stopthethyroidmadness.com/recommended-labwork)
4. that it’s worthy to quote a Dr. Daniels who states ”There’s no compelling evidence that medication helps patients whose TSH is in the 5.0 to 10.0 range,”  (exactly the kind of doctor which nearly all informed thyroid patients state has kept them repeatly sick for years!  http://www.stopthethyroidmadness.com/give-me-a-break )
5. that if you have “other problems”, such as infertility or depression, your doctor might suggest medication (when, oh when, are doctors going to GET IT that depression and infertility are key symptoms of ongoing hypothyroidism!! http://www.stopthethyroidmadness.com/long-and-pathetic )
6. that T4 meds like Synthroid are T4 hormone are the go-to medication (and are the very medications which have kept patients sick, disabled, or with problematic hypothyroid symptoms  for  over 50 years! http://www.stopthethyroidmadness.com/t4-only-meds-dont-work )
7. that the “potency can vary” for desiccated thyroid…as if that’s a good reason to be concerned about its use  (potency is set in a predictable range and is made according to the strict guidance of  the United States Pharmacopeia , say the makers of desiccated thyroid, and desiccated thyroid has been changing lives ten fold for decades!  http://www.stopthethyroidmadness.com/natural-thyroid-101)
8. And last but not least…that you need to be on-guard about online patient information (yet wise and repeated “patient experience” has changed not only patient lives, but the way open-minded doctors are practicing in their own offices!! http://www.stopthethyroidmadness.com/things-we-have-learned 

All the above, appearing in what we all thought would be considered a long-standing good magazine, only underscores the irresponsibility and ignorance of the media about REAL LIFE!! Who wants to subscribe to any magazine, or listen in seriousness to any news program, talk show, or internet website that allows this kind of DARK AGES BALONEY on its pages??  I don’t.

P.S. One particularly personal tragedy is the author of this article, Susan Carlton. She is clearly hypothyroid, yet completely duped by the pharmaceutically-brainwashed medical field which clings blindly to a poor medication and inadequate labwork.  She is ALL OF US LOOKING AT OURSELVES all those years when we believed in the doctors we went to and emptied our pocketbooks to try and find out why we had depression, infertility, rising cholesterol and blood pressure, linger aches and pains, poor stamina and fatigue, weight gain, hair loss, anxiety…and so many more symptoms of undiagnosed or undertreated hypothyroidism. 

And sadly, how many of us also thought that actions similar to “drinking more java (for energy)”, or “honing crossword skills (for focus)” or attending a “spinning class”  (for our weight gain) was going to help us!  They didn’t help at all. They just sent us closer to adrenal dysfunction and disability.

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If you could speak to the author, Susan Carlton, in kindness and wisdom, what would you say to help her get past the brainwashing she is a victim to, as you were??

If you could speak to Good Housekeeping and all media like Oprah, CNN, MSNBC, ABC, FOX, what would you say about the repeated misinformation?

I’m amazed at lingering problems since being on T4: Though I’ve been on desiccated thyroid for 8 years, and do quite well since correcting low ferritin twice thanks to the lousy T4-only treatment, I discovered that my RBC magnesium is low, as I suspect my RBC potassium is, as well–all probably down due to chronic economic stress from this lousy economy.  But it underscores that we all have to be vigilant and not hesitate to periodically get minerals and electrolytes tested, especially RBC (Red Blood Cells), as well as anything else your doctor recommends, or you read about. Labs you can do yourself are here, then share with your doc. You can read about potassium issues here.

Under stress with the economy or the holidays? When stressed, I love and use the herb Ashwagandha. It’s been used for thousands of years in Ayurvedic healing, helping your immune system and stress response.  High dose B-vitamins are said to help counter anxiety and depression. Vitamin C is huge for your adrenals like the B’s, and has been known for years to counter the effects of stress. In fact, stress depletes it, so they state you are wise to raise it when under stress.  (Is Vit. C why I never got adrenal fatigue when I deserved to get it? I always took a lot.) Also recommended include the herbs Valerian Root, Marshmallow, Lemon Balm, Chamomile tea, Passionflower, and more. But first do research on any herbs and talk to your doc.

Hypothyroidism can falsely raise your A1C, implying you have diabetes even with normal blood glucose. Just got word from thyroid/adrenal patient Jackie about this study concerning the A1C test, here.  In turn, those on thyroid treatment saw their A1C fall.  We don’t know what the thyroid meds used were, but imagine even better results if on desiccated thyroid, which many patients report does a much better job than T4, especially in the presence of optimal ferritin/iron and adrenal function.

Don’t be complacent: register yourself: Sheila of TPA-UK is working to create a register of patients who have had continuing hypothyroid symptoms while on T4.  After she creates this register of patients, which right now only involves a couple of questions, she will create the a  Worldwide Register of Counterexamples to Levothyroxine (T4)-Only Therapy for. Register yourself here. This will also run alongside Dr. Gordon Skinner’s Worldwide Register, which you can also be a part of here.

Listen to a new video produced by the FDA about drug shortages here. I wonder what our own 2009 shortages with Armour and Naturethroid played a role in this video? Wonder if the FDA will ever admit that they were partly to blame for this shortage by shutting down the 2009 generics? Has anything been left out of this video?

No, Las Vegas Review-Journal. Hypo get undiagnosed because of the lousy TSH, not “subtle” symptoms. Yes, this journal did a recent article, quoting AACE as stating half of thyroid patients remain undiagnosed. The article then states it’s probably due to symptoms being very “subtle” or “very similar to other health problems such as anemia, fatigue, depression, slow metabolism and a wide array of other diseases.”  GROAN. It would be nice if these articles on hypo got it straight: hypo remains undiagnosed because of the lousy TSH lab test, which too many Endocrinologists worship, and because they fail to noticed the obvious symptoms of a hypothyroid state, which include anemia, fatigue, depression, slow metabolism and a wide array of other diseases. i.e. those ARE the symptoms of hypo, not “other health problems”.  When oh when will reporters DARE to state what patients have learned??  (Oh, and guess who included a link to this article in their email Thyroid Weekly? The Endocrinologist-loving, TSH-loving American Thyroid Association.)

Have a great holiday season!!

Janie

P.S. HO! HO! HO! The publishing company will send a book for you to a friend or loved one for a Christmas present. Go here.

It’s a continuing travesty, and you see it in patient groups.

i.e. many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,

So what’s the problem?? It lays with our doctors and the entire medical profession.

1. Heavy-handed control over your medication: You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).
2. Ignorance about adrenal fatigue and treatment: You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.
3. Dismissing the Ferritin test: You want to know what your ferritin is, but the doctor’s nurse underscores that they’ve already checked your iron levels, so there’s no need for more testing.
4. Dismissing you: You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.
5. RT3 huh? You have strong suspicions that your Reverse T3 is too high thanks to adrenal fatigue, low ferritin, undiagnosed gluten issues, or other reasons, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.
6. Look at me! Look at me! You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet any or all of the above and below occurs with him/her or his “trained” associates.
7. Continued worship of the TSH lab test:  Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match.
8. Pharmaceutical addicts: You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understand that these are ALL side effects of poor treatment or undiscovered issues.
9. The country you live in: The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it.  Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail.
10. Reformulations and Big Pharma apathy: Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose , causing a massive return of symptoms in many, sooner or later. RLC also reformulated their Naturethroid, and though some patients still do well on it, others do miserably, and we are left wondering WHAT to take. (Thank God for Erfa’s Canadian “Thyroid”, but will we be able to continue with this fabulous desiccated thyroid product?)

And there are more reasons you might want to bring up in the Comments part of this post.

So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so. I refuse to condemn them for exactly the reasons above.  Petty. All I ask is that we all try to find a good doc, but it may be quite hard when you consider all the above.

All-in-all, we still have  a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt.

(Side note: I feel so stupid. If you have signed up to receive notification of STTM’s blog posts (see signup on left below links), I have inadvertently failed to check a particular box for the emails to go out. I won’t make that mistake again. See the two posts below, which you weren’t notified about when they came out. )

I recently chatted with Sheila Turner, a thyroid patient advocate in the UK who runs the website Thyroid Patient Advocacy–United Kingdom.

And she has become absolutely disgusted at what is happening in the UK–disgusted enough to stop being polite and to ask direct and pointed questions on the home page of her TPA-UK website.

What spurred her tough new stand?  Says Sheila, “The RCP (Royal College of Physicians), BTA (British Thyroid Association) et al are doing everything they can to boycott all T3 containing products and their latest ‘Statement’ on the diagnosis and management of primary hypothyroidism is banning general practitioners from prescribing T3 at all.“.

And, explains Sheila, it’s gotten to the point where most any General Practitioner is completely afraid to prescribe T3 or any T3-containing product like natural desiccated thyroid for fear of being reported. “The ONLY people allowed to recommend that T3 be prescribed are “accredited endocrinologists”, says Sheila. (And how many patients have experienced how close minded Endo’s can be towards desiccated thyroid.)

And here are her brilliant, in-your-face questions with links, which are pertinent for ALL of us, whether in the UK or not:

1. WHY do the GMC, the RCP, the BTA et al. deliberately choose to ignore the scientific evidence that has been available for over 40 years ?
2. WHY are medical associations ignoring the 13% failure rate of T4-only therapy for the past 50 years? Why are patient’s complaints dismissed?
3. WHY has there been no correction to the RCP statement when there are patients who are counterexamples to the validity of T4-only therapy?
4. WHY is the confusion of two definitions for ‘hypothyroidism allowed to continue?
5. WHY are guideline authorship and concise guidance to good practice protocols ignored?
6. WHY are individual symptoms of hypothyroidism stated to be “non-specific” when Baisier found groups of these symptoms may be quite specific?
7. WHAT further investigations for non-thyroidal causes are recommended as relevant to the symptoms of hypothyroidism when pituitary and thyroid GLAND function tests are biochemically normal – Levels of fT3, rT3 and adrenal levels?
8. WHY are the studies by Das (2007) and Lewis (2008), which found that patients could be successfully treated with thyroid extract being ignored?
9. WHY is medicine ignoring false negative test results?
10. WHY do doctors refuse to explain and/or justify their decisions, thereby withholding information necessary for valid consent to treatment?
11. WHY does the NHS refuse to take steps to protect human rights when sufferers are put at risk through a disregard of the demand that patients should be treated with fairness, respect, equality, dignity and autonomy?
12. WHY are laboratory discrepancies in serum testing being ignored?

I appreciate the tough stand Sheila is taking. We HAVE to take a strong stand in light of the worldwide ignorance about 60 years of patient suffering on T4 meds like Synthroid, Eltroxin et al, about better treatment with natural desiccated thyroid and T3 products, and about the lousy TSH lab test!

In fact, in light of practically NO mass media attention to this huge worldwide thyroid treatment scandal, we have to shout it wherever we can and hope that some WISE reporter or media personality gets this and will shine a media light at the idiocy going on out there towards thyroid patients. Stop the Thyroid Madness!™

In case you are interested, the following represents Phase 3 of the FDA Transparency Initiative, which could end up benefiting thyroid patients as we deal with the upcoming clinical trials for natural desiccated thyroid. The links at the bottom give more understanding, as well.

For Immediate Release: March 12, 2010

FDA Task Force Seeks Public Comments on Increasing Transparency With Regulated Industry

As part of the final phase of its transparency initiative, the U.S. Food and Drug Administration is seeking comment from the public and other interested stakeholders on how the agency can increase transparency in its interactions with regulated industry.

Posted in the March 12, 2010, Federal Register, the request for electronic or written comments has a deadline of April 12, 2010.

The FDA regulates products responsible for about 25 percent of the gross national product of the United States and the industries responsible for these products. Products regulated by the agency – biologics and blood products, human drugs, foods, medical devices, radiation-emitting devices, and veterinary medicines – are integral to public health and to the U.S. economy.

The agency formed an internal Transparency Task Force in response to the Obama Administration’s commitment to achieve “an unprecedented level of openness in Government.” The Task Force is developing recommendations for making information about FDA activities and decisions more useful, understandable, and readily available, while appropriately protecting confidential information.

The Task Force held public meetings in June 2009 and November 2009. Based upon input received thus far, the Transparency Initiative has been divided into three phases. The first phase, creating a Web-based resource called “FDA Basics” to provide information on commonly misunderstood aspects of the agency, has been completed. The second phase, improving FDA’s disclosure of information to the public, is underway and the agency intends to issue draft proposals for public comment soon.

The request for comment for the third phase follows a series of listening sessions with members of regulated industry in January 2010. Transcripts and summaries of those listening sessions are available at http://www.fda.gov/transparency and at http://www.regulations.gov.

For this final phase, the FDA is particularly interested in comments from all interested parties on how the agency can make improvements in the following areas:

• Training and education for regulated industry about the FDA regulatory process in general and/or about specific new requirements
• The guidance development process
• Maintaining open channels of communication with industry routinely and during crises
• Providing useful and timely answers to industry questions about specific regulatory issues

Electronic comments may be submitted to http://www.regulations.gov.  Submit written comments to the Division of Dockets Management (HFA–305), Food and Drug Administration, 5630 Fishers Lane, Room 1061, Rockville, Md., 20852. All comments should be identified with docket number FDA–2009–N–0247.

For more information:

• March 12, 2010 Federal Register Notice
• FDA Transparency Task Force Web Page
• FDA Basics Web Page
• FDA Transparency blog: http://fdatransparencyblog.fda.gov/2010/03/final-phase-of-the-transparency-initiative-we-want-your-ideas.html
• How did we get to where we are with the FDA’s actions towards desiccated thyroid today? Go here.