desiccated thyroid tags

Answer: Most are duds.

On Monday, I had an enjoyable experience with an exception to the lemon cliche:  I was a guest on Dr. Steven F. Hotze’s radio program Health and Wellness Solutions, broadcast live from Houston, Texas.  You can listen to a recording of our conversation here on the lower right under the heading Dr. Hotze Radio in orange.

The commercials were like flies, zeroing in often and irritatingly. But we managed to briefly mention both Stop the Thyroid Madness as well as the Hotze Health & Wellness Center.

And two things struck me about our friendly chat: first, Hotze mentioned that he started prescribing natural desiccated thyroid in the 1990′s, far ahead of most doctors even today!  If only we knew.  And second, he made a quick mention of how disappointing most doctors are for patients, referring to the STTM page called Give Me A Break. If you haven’t seen it, or it’s been awhile, you will find it both hilarious and completely sad.

And it all made me ponder how in 2010, eight years after I personally found the life changing desiccated thyroid,  there are still so many family practitioners and Endocrinologists keeping thyroid patients sick all over the world, even if they mean well, even if they are good people, even if they do other diagnoses and treatments correctly.

So on one hand, it’s reality that progress is slow. But on the other hand, the thyroid treatment wall of ignorance is slowly tumbling down about better thyroid treatment thanks to patients who read about it and carry that information into their doctors offices.

So perhaps over time, the lemons who practice bad thyroid treatment will become less and less prominent in the name of enlightenment, wisdom and LISTENING to patients.

P.S. And by way, if you are lucky enough to have found one of those docs who prescribe desiccated thyroid, remember that NO doctor is all-knowing. YOU live in your own body, and can have your OWN wisdom and knowledge. So expect the relationship be a partnership. And if you can’t get that partnership, find a better doctor.

Want to read more about natural desiccated thyroid? Go here.   To read my own story, go here.

(Monday April 5th Postscript to my blog post below: One of the patients interviewed by this reporter states the following: The report left the impression that we (desiccated thyroid users) are a teeny little group on the fringes of medicine, rather than a ground swell of well researched patients trying to improve our health (and every aspect of our lives) with rational, common sense alternatives. We are still voices crying in the wilderness, and ignored by the mainstream medical professionals. C’est la vie.)

Finally.

After years of near-complete silence by the mass media about the profound 60-year medical scandal of T4-only treatment like Synthroid, as well as lives changed due to natural desiccated thyroid, we have some progress.

A few weeks ago, I was contacted by health reporter Pauline Dakin of CBC (Canadian Broadcasting Corporation) Radio. She was preparing a report on thyroid treatment and desiccated thyroid, asking for names of Canadian patients and doctors who might speak of their own experiences. Among others, I got her in touch with Canadian thyroid patient Theresa Roberts, who has reminded me of this report.

And, Pauline Dakin’s report on desiccated thyroid will be presented TODAY, Easter Sunday, on CBC Radio One on “The World This Weekend” at 6:00 pm Eastern Time (5 pm Central, 4 pm Mountain and 3 pm Pacific). It’s a comprehensive 1/2 hour news program that airs nationally on weekend evenings and takes an in-depth look at current issues.

And even if you aren’t in Canada, you can listen to this program on CBC Radio One live at http://www.cbc.ca/worldthisweekend/ , or you can download the podcast (which may require free subscription).

HIGH FIVE to Pauline Dakin and the Canadian Broadcasting Corporation.

The 60-year use of T4-only medications like Synthroid, Levoxyl, Eltroxin and other brands has NOT worked for hundreds of millions worldwide, resulting in each patient’s amount and degree of lingering symptoms of hypothyroidism as well as the added misery of adrenal fatigue.

We have also been bandaided with anti-depressants, statins, pain meds, high blood pressure meds and more, all the while being told by our clueless doctors that we are schizophrenically ‘”normal” because the also-lousy TSH test says so.

Or, like my own mother, we have been subjected to Electric Shock Therapy because of depression caused by T4 meds and their inadequate treatment.  You can read about my mother here.

Stop the Thyroid Madness™!

P.S. Sign up for the “newsletter notification” of this blog–see right below the links to the left. Or you can use your RSS feed page.

(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!™

Good or interesting news is kinda slack right now.

But last week, the ombudsman of the FDA’s  Center for Drug Evaluation and Research (CDER), came out with their 2009 report that I found interesting. The Ombudsman are those who receive and impartially look at any communications from patients to the FDA about medications.

On the fourth page, you find this under the heading Drug Shortages: Desiccated Natural Thyroid does not have FDA approval and it’s availability became quite limited in 2009. Many consumers complained to the ombudsman because of their preference of desiccated natural thyroid as thyroid replacement medication over the FDA approved synthetic versions.

Of course, the above gives a potentially false impression that the shortages were due to the lack of FDA approval–and reasons for this stupidity concerning “FDA-approval” are explained here.

To the contrary, last years shortages may be explained by production issues with the North American producer of desiccated thyroid powder, as well as demand being greater than supply thanks to patients finding out about the superiority of desiccated thyroid over T4-only meds like Synthroid.  The STTM website and book is working, as are numerous good patient groups and forums!

But the above reveals that they are hearing thyroid patients speak.

So with this being a somewhat silent period, waiting to see when the FDA will require RLC (Naturethroid) to do ridiculously expensive clinical trials to prove what patients have already known for 110 years–that desiccated thyroid is safe and effective–it can be a GOOD time to continue communication with the FDA. How? By reporting YOUR EXPERIENCE AND PROBLEMS with T4 for their 2010 report next year. i.e. it will serve to cement why so many did call to state their preference. Here’s how:

• Call or fax them and report what happened to you on T4: 1-800-332-1088
• Fill out their form: http://www.fda.gov/downloads/Safety/MedWatch/DownloadForms/UCM082725.pdf and fax or mail to MedWatch; 5600 Fishers Lane; Rockville, MD 20852-9787
• Contact the FDA rep for your state: http://www.fda.gov/Safety/ReportaProblem/ConsumerComplaintCoordinators/default.htm

If you had depression or other psychological issues while on T4, report it.

If you have rising cholesterol, low ferritin, and/or low B12 because of T4, report it.

If you had dry skin or hair, digestive issues, or aches and pains, report them.

If the quality of your life was lowered on T4, report it, outline it, detail it.

If you got adrenal stress because of being on T4, underscore that lousy truth to them.

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.