March 2010 - Stop The Thyroid Madness Skip to content

Month: March 2010

Sock it to ’em, Sheila of TPA-UK! She has asked some STRONG questions!

(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!â„¢

12 replies

The 2009 FDA Ombudsman report, and why you need to contact the FDA

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:

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.

1 reply

Having lower TSH levels when taking thyroxine not unsafe, says recent research

(Though this post was first written in 2010, it still works for today and is very pertinent!)

I am amazed.

The Society for Endocrinology in the UK reported that taking higher doses of thyroxine (which will lower the TSH lab result) may be safer than has been purported for decades.

And how low a TSH lab result did they find to be safe? As low as 0.04-0.4, the research found. It’s still safe enough to not cause an increased risk of  “heart disease, abnormal heartbeat patterns and bone fractures”, aka HYPERthyroid symptoms.

And those of us worldwide who know about the superiority of having T3 in our treatment (like a working natural desiccated thyroid, T4 with T3, or even just T3-only), can also use these research results in our fight to be on enough with TSH-obsessed doctors. They tend to view research as the end-all to the truth rather than solid clinical presentation, sadly.

Because when we have enough T3 to feel fabulous again with all symptoms removed (in the presence of good cortisol levels, adequate iron levels, B12 and digestive issues), our TSH lab result is always low, aka suppressed, and without one iota of hyper symptoms.

Patients have experientially known this truth about the lousy TSH lab test, without research, for years!

P.S. You WILL feel good most of the time with a midrange free T3, but it eventually backfires. We have to get that free T3 optimal. <—Read the latter.

But here’s what’s missing from their research:

  1. Those “safe, low levels” of an ink spot on a piece of paper do not mean the 16,426 patients they followed will be without numerous issues related to being on a storage hormone alone.  i.e. the body is not meant to live for conversion alone! A healthy thyroid will convert T4 to the active T3, but it will also provide direct T3 in addition to the T2, T1 and calcitonin…none of which a T4-only med provides directly.
  2. Additionally, the TSH lab test only reveals the action of a pituitary messenger hormone called the Thyroid Stimulating Hormone (TSH).  The lab test does NOT measure whether your tissue is receiving enough thyroid hormone, which is why so many patients on T4 end up with depression, rising cholesterol, high blood pressure, low B12, low iron, and many symptoms, as well as adrenal fatigue thanks to the inadequate treatment of T4.
  3. Raising T4 often encourages an excess production of Reverse T3 over time, which will block cell receptors and increase the very symptoms the researcher state is avoided, as well as far more hypothyroid symptoms.

On the positive side

This is just one more research study that ends up being on our side!  i.e. it fits our experiences. I have also included mention of this study on the following page on STTM, where I keep a ongoing list of research which supports what patients already know by their experience and clinical presentation:  www.stopthethyroidmadness.com/medical-research/

35 replies

The FDA and their Transparency Initiative may interest some of you as thyroid patients

The FDA....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:

100 things to do with your bottle of Synthroid…

Well, I just can’t let this go by the wayside, says I with a cheesy grin.

When I did the lighthearted post, two posts below his one, about a woman who got filthy rich thanks to her old stock with Abbott Labs (the makers of Synthroid),  it got a humorous and creative comment from “Elizabeth”:

I have found a couple of uses for a bottle of Synthroid:

A. Doorstop
B. Prop for DSL modem (so it won’t overheat)

However, I do not recommend it to be taken internally. Ever.

hahahaha.  You get a blue ribbon for that gem, Mz. Elizabeth.  And I think Elizabeth’s creatively-funny reply deserves expansion and a party of fun-lovin’ contributors. So now it’s your turn, fine reader of the STTM blog,  to list your own innovative and hilarious ideas for that bottle of a T4-only medication.  Just use the Comment below this post and let ‘er rip.

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Below this post you’ll see information on the current failure of McCain’s cockeyed anti-supplement bill, which if it had passed, would have negatively affected every single thyroid patient out there who is trying to undo the damage done by T4 meds and/or the inane TSH lab test.  So though we all won right now with this failure, you betcha we’re going to have to keep our eyes and ears open for the money-grubbing Big Pharma to influence someone else about supplements.

25 replies