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Year: 2009

Glad to see some reason creeping in with thyroid patient discussion!

IMG_2564If you have been keeping up with my posts, you’ll know that thyroid patients have been facing a shortage of desiccated thyroid for many weeks, probably due to sharp increased demand i.e. thyroid patients have been finding out how lousy T4-only treatment like Synthroid has been for them, and how much better desiccated thyroid is.

That demand became especially true after a reformulation of Armour by Forest Labs in 2009 drove patients to RLC’s Naturethroid and Westhroid. The “new” Armour caused a return of hypo symptoms plus new maddening ones, including palpitations and sleep problems never seen before.  As Julia Roberts said in the 1990 movie Pretty Woman: Big mistake, Big, Huge.

In addition, it didn’t help when Time Cap Labs, a pharmaceutical which made plenty of desiccated thyroid for other pharmaceuticals, stopped production after being contacted by the FDA. This action was probably in line with their aims to make long-term unapproved drugs become approved, even if the timing was incredibly stupid.

As all the above was happening, panic ensued!

We’ve heard all varieties of negative presumptions from thyroid patients about what caused the shortage, including an FDA conspiracy and an overt belief that desiccated thyroid is about to be removed.  Patients have threatened law suits, blamed pharmaceuticals, and/or sent numerous letters to FDA pleading to keep desiccated thyroid as if it was to be gone tomorrow. Even I, at first, fell in line wondering about the FDA.

But it started to dawn on me, as it has others, than we have been jumping the gun, not giving enough emphasis to facts and reason.

And finally, facts and reason are starting to appear on blogs and groups:

1) Yes, Forest Labs, the makers of Armour, and RLC, the makers of Naturethroid and Westhroid, state they have not been contacted by the FDA. We have no reason to disbelieve them!

2) Yes, RLC is working hard to catch up, as is American Laboratories, both state. We also have no reason to disbelieve them!

3) Yes, thyroid patients who know the superiority of desiccated thyroid have always been there to support them. Glad to see that recognition in blog and group postings.

4) Yes, as health writer Mary Shomon has stated, information-gathering, brainstorming, and communicating with our doctors is a good thing to be doing.  That is contrary to making panicky negative predictions about desiccated thyroid,  rallying for law suits, and feeding ideas to the FDA that may not be there in the first place.

5) Yes, we need to put energy in letting the world know about the superiority of desiccated thyroid treatment in our lives. That is where our power lies in the face of clueless Endocrinologists and their equally-clueless medical boards like AACE.

6) Yes, we need to listen to and support the pharmaceuticals and laboratories which give us the desiccated thyroid we need. It’s they who have to walk the line with the FDA. Let’s listen to their cautions and support them.

Strangely, there are still misconceptions being reported by patient blogs and posts:

1) That we don’t know what caused the shortage. But we do! Demand is as logical as it gets.  All of us have succeeded in getting the word out! That is exactly why I created STTM in the first place!  And by emails I get every week, it’s clear that it’s been working.

2) That groups like the Coalition for Desiccated Thyroid (CDT) have a wait-and-see attitude. That is as silly as saying STTM wants to ban T4 or encourages self-treatment. There are simply some thyroid patients who don’t agree with the extreme panic and negative presumptions that have been going on, and want more reason in our pro-activity!  Patients have been encouraged to spread the word in any way possible about the superiority of desiccated thyroid and how it’s changed lives, NOT to feed dire negative predictions which only end up giving ideas we don’t want to give! You are most welcome to join the Coalition above in addition to other groups.

Good for patients and advocates alike for putting more reason and fact in this situation.

I’m also glad to see some strategic, pro-active behind-the-scenes work going on as a just-in-case line of activism. That is the way it should have always been–a plan for action “just in case”, not dire predictions and fear mongering as if it all WAS going to happen.

We’ll get through this, folks. Here are options for thyroid treatment in the meantime. And if you want to talk to other patients, join our thyroid patient Community Call this Friday. Details are found in the September 7th blog post.

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American Laboratories continues to work hard at production.

ALIOn the August 19th blog post, you can read about the only North American manufacturer of natural porcine desiccated thyroid called American Laboratories (ALI). ALI sells to distributors who in turn pack it up in smaller quantities which go to those who create desiccated thyroid products.

I just got off the phone again from Kenny Soe­joto, the Chief Ope­ra­ting Offi­cer at ALI.  And the news couldn’t be better.  ALI is working hard to catch up and is currently shipping to all their customers.  Yes, they are still in a backorder situation due to demand being greater than supply in 2009, but work is in progress, shipments are being made to all, and they hope to see some major catching-up in two months or so.

And his most important comment? “If we had FDA issues, we wouldn’t be producing”. i.e. everything is going fine. 🙂

In the meantime, there seems to be two areas of success right now with getting your desiccated thyroid prescription filled:  from Canadian pharmacies, and from Compounding pharmacies.  Hang in there. We’ll get past this.

Join us next Friday for our next thyroid patient Community Call via Talk Shoe. See the blog post right below this for information.  Below that is information about the Coalition for Natural Desiccated Thyroid, an independent group working alongside Mary Shomon’s efforts, as well.

*Want to be infor­med of these blog posts? Curious what’s on Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

* STTM t-shirts are half price! I love sales!

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Join us every Friday night for a STTM Community Call Talk Show

talkshoeOh boy! You are invited to a Thyroid Patient Community Call on your computer which will be held each and every Friday night for an hour with myself, Janie, as host.  We had the first one last Friday and it was fun and informative. No, I didn’t announce it here because I wanted to work on any bugs in the system as we learned to use it.

Here’s a chance to ask questions about shortages of desiccated thyroid, options to talk to your doctor about to treat your hypothyroidism during this shortage period, how to find a good doctor, and more.

Times are 7 pm Pacific, 8 pm Mountain, 9 pm Central and 10 pm Eastern. Just go here: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

You can make two choices: just listen to the Audio of the podcast talk show, or call in. Phone number will be right on the bottom.  You can register with Talk Shoe and pick a user name, or come in as a Guest.

You’ll also note a chat box.  The handy and beautiful gals Darla and Diane will usually be there to guide you. If you want to line up to talk in the queue, you’ll be asked the topic of your conversation in the chat box.  As you wait for me to get to you, you’ll be able to hear the talk through your phone, and will need to MUTE your computer sound.

You’ll be seeing guests join us, as well, so watch for each Community Call announcement on the above link. And even without a scheduled guest, you just never know who is going to pop in and chat. 🙂

Come join us! And remember: we are all just patients chatting with patients. This is not to replace the relationship with your doctor in your treatment or for treatment advice. Stick with your doctor for that.

*Want to be informed of these blog posts? Curious what’s on Janie’s mind? Just use the Notifications on the left below the links.

* STTM t-shirts are half price! I love sales!

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Erfa’s Canadian “Thyroid” — more details

erfathyroidOn my August 26th blog post below, I reported good information about US patients being able to use their doctor’s prescription to order the Canadian version of natural desiccated thyroid called simply “Thyroid” by Erfa.

And here’s more:

In each Erfa 30 mg tablet embossed “ECI 30”, there is 18 mcg. of T4 and 4 mcg. of T3;

In each Erfa 60 mg tablet embossed “ECI 60”, there is 35 mcg. of T4 and 8 mcg. of T3;

In each Erfa 125 mg tablet embossed “ECI 125”, there is 73 mcg. of T4 and 17 mcg. of T3.

Erfa’s very friendly and helpful Medical Director, Henri Knafo, MD, states that they follow the USP (United States Pharmacopoeia) specifications. But  I do see some slight differences.  The USP specifications ratio for one grain that we are used to in the US is 38 mcg. T4 and 9 mcg T3, i.e 38/9.  The above ratio is 35/8.

Likewise, US patients are used to 2 grains of 120 mgs having 76 mcg of T4 and 18 mcg of T3, i.e. 76/18.  In Erfa’s medication of 125 mg, you will get a ratio of 73/17. I don’t know if this will make much of a difference but want you to be aware as you work to adjust Erfa’s desiccated thyroid to the treatment you were used to.

Knapo happily states that most all “Thyroid” is making it across the border to the states without issue.  You will need your doctor’s prescription. And by the way, Erfa’s Thyroid is manufactured in Belgium, plus they have a huge supply of desiccated powder.

Erfa is also working with IDIS to get Thyroid to others. You can read about them here.

Need a doctor to work with who will provide a prescription for your needed desiccated thyroid? There are a growing body of  good doctors out there.  We also have a good list of  Canadian pharmacies you can consider using during the current shortages.

I have also received word from a gal that the FDA document 1572, a federal form that FDA requires for over-the-border movement, has not always been used, and Erfa’s medication is arriving fine. i.e. the FDA may be tolerating it.

*Want to be infor­med of this infor­ma­tive posts? Curious what’s on Janie’s mind? Use the Noti­fi­ca­tions on the left at the bot­tom of the links.

*The STTM t-shirts are now 50% off.  Spread the word!

*Need feed­back from other patients? Go to the STTM Talk to Others page.
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American Association of Health Freedom has reported on this situation

AAHFBefore I post this, I want to remind everyone that as I am writing this, the FDA has not made an official statement concerning desiccated thyroid, and I want to avoid excessive fear mongering and undue speculation by underscoring that.

But with that being clarified, the American Association of Health Freedom (AAHF) has just today issued an article about the desiccated thyroid shortage that you might find of interest.

Concerning Time Caps Labs and being told to cease production, the article states:  The FDA has decided to classify the company’s product, available for over a century, as an unapproved new drug.  Since the new drug approval process is prohibitively expensive for a non-patentable substance, the FDA is in effect banning the natural product.  The purpose?  Presumably to protect the profits of other, inferior drugs that have been FDA approved.

And I especially appreciate this comment: As famed physician Dr. Jonathan Wright observes:  “Natural thyroid has never killed or severely harmed anyone since its first use in the 1890s, prior to the FDA itself. It is a mainstay not only in the treatment of hypothyroidism but also in ‘healthy aging’ therapy. That the FDA should even be thinking of requiring a new drug approval for a safe, 100 plus year old natural treatment is outrageous.”

Kudos and appreciation from all thyroid patients go to Dr. Jonathan Wright, besides AAHF for giving acknowledgment of this issue!

Better treatment with Desiccated Natural Thyroid has been my main focus as a thyroid patient activist since 2003 and with great conviction.  I and millions of others whom this website and book represent know how GOOD this medication is and we definitely appreciate this kind of support. :)  Yes, millions of us have had our lives change ten-fold thanks to this safe and effective 110 year old medication. You can read just a touch of those changed lives on the Stories of Others page.

In their Overview, the AAHF explains:

The American Association for Health Freedom (AAHF), currently in the process of merging with the Alliance for Natural Health (ANH), is part of an international organization dedicated to promoting sustainable healthcare and freedom of choice in healthcare through good science and good law. We protect the right of natural-health practitioners to practice and the right of consumers to choose the healthcare options they prefer.  Since 1992, we have worked to shift the medical paradigm from an exclusive focus on surgery, drugs and other conventional techniques to an “integrative” approach incorporating food, dietary supplements and lifestyle changes. This is the way to improve health and extend lives while reducing the costs of healthcare back to a sustainable level.

You can read more on their Overview by clicking the link above. And if you need to communicate with anyone, provide facts and all your concerns to your congresspersons.   Here’s a template letter to use or change, and there are other good ones circulating in many good thyroid or facebook groups and forums out there.

P.S. Dr. John C. Lowe has also provided a very informative and well-reasoned editorial pertaining to our current shortages.

*Want to be informed about my blog posts? Curious what’s on Janie’s mind? Use the Notifications on the left right below the links.

*STTM t-shirts are 50% off. I love sales!

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