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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„¢

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It ain’t for sissies: getting older and hypothyroidism (plus FDA says it did NOT tell pharms to stop desiccated thyroid)

Yup, we’re all heading in the same direction—being just a tad older every single year and getting that first mailing from AARP.  Yup.

And getting older increases the incidence of thyroid disease.

Even worse, those who acquire it at an older age are probably going to go through the same bunk and bull those younger have gone through–having depression, rising cholesterol, osteoporosis or ostepenia, weight gain, easy fatigue, couch potato syndrome, dry skin and hair, plus more—-all classic symptoms of undiagnosed or undertreated hypothyroidism.

But older folks are told it’s all just part of aging so here’s your latest tablet for your handy-dandy Wal Mart pill box.

I recently found a great blog by Pam whose Feb. 23rd, 2010 post is titled Older Women and Low Thyroid. She turned 65 in 2009 (and she looks a lot younger) and writes how she found herself with hypothyroid at a later age as well.  And Pam is WAY ahead of the game in her knowledge. She understands that most older folks are put on Synthroid (which can be a lousy way to treat hypothyroidism for many), that getting older means conversion from T4 to T3 can be more difficult,  that being on desiccated thyroid or T3-only just might be the better treatment, and you can get adrenal fatigue at an older age as well (thanks to poor treatment with T4, the TSH lab test, or being underdosed even on desiccated thyroid).

You can read Pam’s post here, as well as about the phone call from her friend who is 50 lbs overweight, has brain fog, is out of work, has no energy…and voila–is on Synthroid so it can’t POSSIBLY be her thyroid. Sad. In fact, what has happened to Pam’s friend is what I keep stating to those who feel they are just doing peachy on T4: watch out, because as you age, the truth about T4 will reveal itself!

Pam, I love your blog posts, and I’m going to hope to see more of those in the “venerable age range” be just as wise as you are!!

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FDA HAS MADE A STATEMENT ABOUT NATURAL DESICCATED THYROID: Just before I was going to plop into my bed for the evening, I checked my notifications to discover that right on the FDA website and their 2010 Drug Shortages page (3rd column up from bottom), it states: Forest reports manufacturing issues involving the raw material and RLC reports increased demand. FDA has not ordered Forest or RLC to remove these thyroid (desiccated) tablets from the market. BINGO. I’ve been waiting for this for months, because though websites and groups were formed last year as if we needed to “rescue” desiccated thyroid from being banned, I couldn’t join the fearful rally of a few because my gut was telling me something quite different.  And a few others, I discovered, had the same feeling.  And hooray! Our guts were right on!

Does this mean the FDA “gets it” about desiccated thyroid? Maybe, or maybe not. Yes, their timing WAS awful last year with Time Caps Labs, right when we were starting a shortage. And there does appear to be some kind of future requirement “proving” the safety and efficacy of dess. thyroid–two things we ALREADY KNOW from 110 years of safe and effective use. Duhhh on the FDA. But it’s FAR more hopeful now, and realistic, and will hopefully promote more reasonable thinking from now on.

Onward and upward, folks.

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Naturethroid is coming back in pharmacies all over the US! See the blog post below or here for information about  the “new” Naturethroid.

(If you are reading this via the Newsletter email notification, just click on the title of this blog post to come directly to the site where you can Comment).

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Guess who I’m going to be talking with next week on Talkshoe??

If you read my recent blog post about it (click on link below or just scroll down on the STTM blog), or if you saw NBC’s Today Show, you’ll know that Dr. Kent Holtorf correctly diagnosed a clearly-hypothyroid woman, Nurse Practitioner Eola Force, by not going just by the TSH, and changed her life. He was criticized by an Endocrinologist as having “no real scientific basis”  for what he does in his practice, and it was equivalent to the “laying on of hands”.  (chuckle)

//www.stopthethyroidmadness.com/2010/01/28/endocrinologists-tsh-lab-test/

Well, it’s time to hear what Dr. Holtorf has to say!

Join us as I chat with him about this incident next WEDNESDAY, FEB. 17th at 6 pm Pacific, 7 pm Mountain, 8 pm Central, and 9 pm Eastern, right on your computer’s audio on STTM’s Talkshoe Call webpage (below). Call in to ask questions, too. MARK YOUR CALENDER! SET YOUR CELL PHONE ALARM! This is one introduction that I’m going to have fun with, don’t ya think??

http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

***Note that we moved it to Wednesday nights. That should help with any dropped calls that were happening on busy Thursdays.

By the way,  Dr. Holtorf recently launched his new website, called The Non-Profit National Academy of Hypothyroidism in an attempt to reach doctors about appropriate diagnosis and treatment of hypothyroidism, which patients know does NOT include just the lousy TSH lab test.  Will doctors, and especially Endocrinologists, ever figure out this clear and easy truth?  Don’t we hope so.

Have something to say? Use the Comment function at the bottom of this blog post. If you are reading this via an email notification, just click on the title of this blog post to take you directly to the actual blog post.

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This and that–an array of interesting info for your thyroid pleasure

I’ve been distracted the past week, having to do extensive research and traveling to find the perfect “new used car”.

Then I caught a cold from hell–rare for me.  I was taking zinc and Vit. C. But a good friend reminded me about Vit. D and it’s immune enhancing effect. OMG, I forgot about it!  So later last night, I took what I thought was 12,000 IU on the first night of being sicker than a dog.  They say to take 1000 mg per 10 lbs of weight. Turned out the gel caps were not 1000 IU each, as I thought, but 2000 IU each. So I ended up taking 22,000 IU.  lol. But the long and short of it is this: though I woke up this morning quite tired and weak, I’ve slowly gotten better all day!! My congestion has hugely improved.  Read this: http://pandemicsurvivor.wordpress.com/2009/11/28/eliminate-the-common-cold/

Love your green powder drink? Just a word of caution: much of what is in many of those powdered greens are goitrogens, which inhibit thyroid production, such as wheat grass, barley grass, broccoli, spinach,  cabbage, maca and spinach, plus much more. But that doesn’t mean you can’t use the green powder. You’ll just have to be sure to use it in moderation, and not consume too many other goitrogen foods each and every day. Or, raise your thyroid meds.

Dr. Peter Gott can give even better information to readers. I noticed that a column on the Tulsa website by Peter Gott, MD of the Newspaper Enterprise Association  could have given different information to a distressed reader who couldn’t find Armour anywhere.  He recommended to this reader, who already stated that Synthroid is not a well-handled treatment, to see if her physician could “alter the Synthroid dosage to find a level”  that could be tolerated.  Actually, there are far better options during this backordered time, which I have compiled here, and includes Erfa’s Thyroid and more.

Naturethroid is appearing in pharmacies! Yup, patients are reporting it! No, it’s not all pharmacies. But you might want to call and see if YOUR local pharmacy has it. Otherwise, it’s coming.  For options during the current natural desiccated thyroid shortages, go here. To see why we are where we are today, read this.

Is there research to prove having a free T3 in the upper quarter of the range when on desiccated thyroid?? A gal emailed me, wanting studies to show her doc. But unfortunately, the answer appears to be no. Instead, this is what patients all over thyroid groups discovered from their lab results when they were feeling fabulous again with no lingering symptoms.  So we simply spread the word. Patient experiences DO count for something.  P.S. Here’s an ongoing list of research that DOES prove some things patients KNOW first hand.  And by the way, when you have a high free T3 and continuing symptoms, time to do labs for ferritin and adrenal fatigue.

By using a code, you can save on labs from HealthcheckUSA. I was informed from HealthcheckUSA that many patients were forgetting to mention the discount code. So look again, and be sure and use it from the Recommended Labwork page.

Janie on radio shows, and a great guest for the upcoming Talkshoe Thyroid Patient Community Call. Can’t say much more, because it’s in the works. Watch for announcements soon.

A new way to be informed of these thyroid posts. The former Notifixious notifications went out of business. But we have a new and GOOD one, referring to the notification as a newletter, and you can sign up free and with no strings attached.  See on left below on the links. :)  Also, there are many more important posts right below this.

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Erfa’s “Thyroid” has been our saving grace–here’s more info from Dr. Knafo and Erfa!

erfalogoThe year of 2009 will long be remembered for two nightmares straight out of Twilight Zone for thyroid patients: 1) Armour desiccated thyroid by Forest Labs was reformulated with patients globally reported a return of symptoms and new frustrating ones, and 2) shortages of all US-made natural desiccated thyroid like Armour, Naturethroid and Westhroid occurred, as well as no more generics thanks to the FDA.

Additionally, as I write this, Naturethroid and Westhroid by RLC Labs are still hard to get–making too slow a return on pharmacy shelves which may not improve until 2010. You can read details and a good summary about this on about.com.

But there’s been a silver lining to this situation: Canada’s “Thyroid” by Erfa.

Many patients made a switch to this desiccated thyroid product, using online pharmacy websites and their prescriptions from their doctors. And overall, the experience of patients with Erfa’s Thyroid has been extremely positive.

I had a wonderful chat this week with Dr. Henri Knafo, the Director of Medical Affairs at Erfa Canada Inc.  My first and most important question: Is there enough Thyroid for all your patient customers?? And I got an unequivocal “Yes” from Dr. Knafo.  He explained there are no concerns with running out and they have plenty in stock, now and in the future. He stated that if their stock gets low from sudden demand, they can easily get more and quickly.

I also asked: Is shipping timely? Definitely yes, Dr. Knafo stated. But he also qualified that Erfa is overloaded with orders. And though they are keeping up, your prescription order can take time to process. But, he stated “Be Patient. It will arrive!”

What is going on with the FDA and Erfa? He underscored that the FDA is cooperating completely, and they see a good future with the FDA.  They are completely tolerant, said Dr. Knafo, because they seem to understand the shortages. Erfa’s Thyroid is also completely approved and regulated by Health Canada. As far as the future and the FDA, Dr. Knafo strongly feels that once the FDA is reassured about desiccated thyroid, things will only get better for US patients with brands and availability. He feels that issues with the FDA are far more positive than many thyroid patients and leaders seem to get or want to see.

Do you see changes towards opinion of desiccated thyroid?  Definitely, yes. Dr. Knafo recently attended a European medical conference with over 50 specialists and he saw many doctors not satisfied with Synthroid and noticing the better treatment with desiccated thyroid. “It’s booming in Europe”, he underscored about Erfa and desiccated thyroid  “Even Endo’s are noticing”.  He also said that Belgium was experiencing a huge medical trend away from T4 and towards desiccated thyroid.

Why has the cost of Erfa’s Thyroid gone up even more than 50%?? His explanation was three-fold:  it was first a financial decision, since they have never made much of a profit on desiccated thyroid. Second, Health Canada requires a lot of expensive testing from Erfa on products. And third, since they buy their powdered desiccated thyroid from Europe, an increase in Euros meant they needed to increase the price.

Any final comments? Dr. Knafo clarified: Erfa has been making Thyroid for 30 years and not only will that continue, they will not change the formula. He thinks the sugar in Thyroid is what makes absorption so good, and that will continue as an ingredient just as it is.  Nothing will change! To see ingredients of Erfa’s Thyroid and other brands, go here.

You can read more about Erfa from my September 2nd post.   Thank you to Dr. Knafo for being so candid and informative!

See my post below about my mother, who lived her entire adult life undertreated on T4 with depression and electric shock treatment and had no internet to compare notes. If you have a relative from the past with a similar story, add the story to the Comments.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. A card will be included, and the book will be in an envelope with a red bow!! Save money the more you buy!

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