• hypothyroidism

Surely most anyone who has been outside has felt a little drop here…then a little drop there…and you wondered:  am I getting ready to be rained on?

Now I’m making no guarantees nor saying this is absolute fact…but because of emails I’m getting and other information, I’m seeing little drops of potential evidence that we may be seeing the beginning of a return of natural desiccated thyroid in our pharmacies. Are we?

For one, a patient called the Forest Hotline today (866) 927-3260, and it said that the 4 and 5 grain is available. Is that an old recording, or could that be a possibility at some pharmacy here or there? Granted, Forest states that the problem of backorders has been found in the “complicated steps in the supply line”, and “one factor is the supplier”.  But if the 4 or 5 grain tablet is available, is something getting through here or there?

Then comes an email from a gal stating she was told by her large national pharmacy that Armour would be in stock by the middle of October.  That is similar to a comment on another blog post below.

Also, American Laboratories, the producer and supplier of desiccated powder, has always stated that they continue to make it–just not enough to meet the demands of larger pharmaceuticals all at once. i.e. perhaps some is getting through.

Little positive rain drops of clues? Maybe. I’m not sure what the near future holds. And there are unanswered questions, such as will Armour still be ineffective for so many in its reformulated state?  In what way, and when, will the FDA follow through on the 1960′s Drug Efficacy Study Implementation (DESI) to prove that desiccated thyroid is safe and effective (which still makes most of us want to ask  “Aren’t 110 years enough evidence?”)

In the meantime, there are options you can use for good thyroid treatment here. Just work with a good doctor if you use any of these options. But a caveat–a few Canadian pharmacies have doubled their prices!! Ouch. I find that very nasty and unethical. So check their prices on the website as compared to what was listed on this page. And GOOD NEWS: a German pharmacy will ship out its own brand of desiccated thyroid.  See it on the Options page.

There continues to be good feedback from patients that most compounding pharmacies have plenty of desiccated thyroid powder in stock.  The above link gives information on how to find a compounding pharmacy. I have used one before that mailed my order to me after my doc faxed the prescription.

Join the Thyroid Patient Community Call on Talk Shoe this Friday.

On 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.

Before 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.

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There once was a gnarly, bottom-scratching and tuna-breathed man who terrorized a neighborhood as if he was above the law. He intimidated people, used threats to stop others from telling the truth about his actions, and he mooned his hairy buttamous to anyone he didn’t like. He brought other criminals into his large house, took bribes to do some of their own dirty work, and stole every single vegetable and fruit from all his neighbors gardens.

Finally, all the fearful, frustrated and hungry neighbors got angry, sick and tired of it all. So they sent him emails, letters and phone calls, asking him to stop what he was doing, and explaining how he was hurting their lives and well-being,  and speculated how he was going to do this or that.

And do you think he stopped doing what he always did?

Finally, the neighbors got wise. They reached out to the police, to local radio and TV stations, to the newspaper, and even to local political leaders.  They stated the facts as they knew them, how specific actions affected their lives, how they had speculations that they couldn’t prove but were quite uncomfortable…and they made sure everyone knew what was going on to get the help and support they needed. 

********************************

For over 100 years, thyroid patient lives have made a huge and positive turn-around on natural porcine desiccated thyroid, a superior, safe, and effective medication as expressed by all our lives for over a century.  But today, we face a crisis.

The most popular desiccated thyroid brand, Armour, was reformulated by 2009  and most patients reported a return of their hypothyroid symptoms. Then, the only other major pharmaceutical, RLC Labs, has their quality Naturethroid and Westhroid on backorder in August of 2009. The only North American makers of the desiccated powder, American Laboratories, is out.

And finally, the remaining two generic makers, Time Caps Labs and Major Pharmaceuticals, are told to cease production by the FDA.

We are now without desiccated thyroid other than the remaining 10 tablets there, or 5 tablets here. They will all be gone soon.

The facts we know are this: because of the 1962 “Drug Effi­cacy Amend­ment”, the FDA is suddenly demanding phar­ma­ceu­ti­cal drug manu­fac­tu­rers (with medications which have been used successfully for 80-110 years) pro­vide proof of the effec­ti­ve­ness and safety of their drugs before they can receive true FDA appro­val, aka potential cli­ni­cal trials and the data that results. i.e. 110 years of patient success, and a website like Stop the Thyroid Madness, and testimonies all over the net and in patient groups with desiccated thyroid…is somehow…just…not…enough.  What is obvious, is not enough.

In other words, they want proof of efficacy and safety of desiccated thyroid—a medication which has a safe and effective track record in a huge body of patients for 110 years…in the same way they give an FDA-stamp-of-approval on a whole variety of drugs which, in 2004, killed 783,936 individuals per year (according to the article Death by Medicine, co-authored by By Gary Null, PhD; Carolyn Dean MD, ND; Martin Feldman, MD; Debora Rasio, MD; and Dorothy Smith, PhD).

Does THAT make any sense to you?

And now, because there is hint that they may require RLC Labs to apply for a New Drug Application…and because we wonder if that will mean expensive and drawn out clinical testing to provide data…and because we wonder if they will allow RLC to continue manufacturing our only good supply of desiccated thyroid which saves our lives in a completely healthy way…we are left with a lot of uncomfortable and unanswered questions.

Of course, we can admit that all the above is pure speculation. We don’t know what will happen until it happens. But we are strongly uncomfortable with the unknowns, frustrated by the possibilities, and scared to death we might lose the only medication which has removed our lingering and debilitating symptoms while we were once on synthetic T4–aka Synthroid, Levoxyl, levothyroxine, etc.

And by the way, synthetic T4 is an FDA-approved medication which has left most of us sick or with lingering symptoms to our own degree and intensity for YEARS. Perhaps THAT is what you need to write the FDA about.

So do we email the FDA about this situation?? I am of the belief that writing/emailing the FDA is no different than asking the neighborhood ogre to change.  I could be wrong, but it is my deep suspicion. In fact, I am suspicious that the onslaught of communication with the FDA is going to do more harm than good…if it hasn’t already…just as writing and emailing the neighborhood ogre would probably cause him to laugh and do even MORE harm.

So what seems the best and most logical action to take with our current situation? Write/email your senators. Write/email your representatives. Write/email newscasters, talk show hosts, radio personalities, newspapers of merit, and anyone who has the power to spread the word. In my mind, we cannot expect to face what may be with power unless we inform the world of our plight ahead of time.

How to say what we need to say? I think, for our integrity in the eyes of whom we speak/email/write to, it’s important to state facts first and foremost. For me, if I need to mention speculation, I turn them into questions: Will RLC be able to afford clinical trials? Will the FDA stop all desiccated thyroid? You may not agree but that’s what seems wise for me.

I have compiled a list of particular congresspersons who just last year, made a resolution against the FDA. You will see a list of those supporters at the bottom of the page with their contact info. Email them.  You will also find links to contact each and every other political office. If I have missed something, let me know and I’ll add it.

I have also compiled a simple template letter you can use, or change exactly as you need it changed, for these emails.  It will not fit every single individual who uses it, so change it as you may. But keep it short and succinct. Too much to read will turn off the reader.

I have tried hard in this post to communicate my thoughts and intuition. I also still have some strong hope and faith that this IS going to work out, one way or the other. I’m just not into fear-mongering based on speculation.  Some of you may not agree with my sentiment, but that’s okay. And some of you may agree that it’s time to strongly communicate with our congresspersons, and I will hope you follow through. All of us need to follow through. I need to follow through. You need to follow through.

NEED OPTIONS FOR THYROID TREATMENT during this hard time? Go here. You’ll also find several Canadian Pharmacies to use with a prescription, as well, that is much easier than ordering directly from Erfa.

NEED A GOOD DOCTOR? Go here.

NEW TO DESICCATED THYROID? Here’s everything patients have learned.

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The subject line of this post was just given to me in an email by a wise and cautious person. And I agree with it.

We have facts. We know that Time Caps Labs cannot make desiccated thyroid. We have read, without seeing the actual press release, that Major Pharmaceuticals has been told to stop. I’d sure like to see this release….

We know that Armour didn’t work well for most and became hard to find. We also know from RLC, makers of Naturethroid, that there is at least a 3 month backorder.

And, we know from American Laboratories that they are making the production of desiccated thyroid powder their #1 priority. Demand was greater than supply.

But beyond that as I write this, we know no more. And to speculate in only a negative direction can be a disaster. To march with our pitchforks and torches is only shining a spotlight in the direction of the FDA, and they may not be friendly.

There are positives. ERFA has allowed us to order their Canadian thyroid. There are other sources out there which I have mentioned below, as has health writer Mary Shomon.

And there are other facts: hundreds of thousands of us, if not into the millions, KNOW that desiccated thyroid really is safe and VERY effective. We KNOW that endocrinologists are totally wrong in their opinions.

So, what you can do is put emphasis on the latter FACT of effectiveness when it comes to you. Write your story.  Give a “”before on T4 and an “after on Desiccated thyroid”. Then send it to me for the Stories of Others page. IF…..and I say IF….something drastic happens from the FDA, we then start providing out testimonies and do what we need to do…one after the other after the other. That is our strength.  Facts, concern, but not panicking and carrying pitchforks and torches which may backfire on you. This is not yet the time, if it even passes.

Janie

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