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How are YOU doing with the current desiccated thyroid shortages?

Pills Spilled Shortages

(This post garnered a lot of attention, up to FIFTY comments just a few hours after it went up. People are very interested in sharing their experiences in coping with the shortages! See below and add your own.)

This year will go down in history as shockingly miserable for enlightened thyroid patients on natural desiccated thyroid.

First came a reformulation in the most popular brand–Armour by Forest Labs. Patients worldwide in groups and forums reported a serious return of their hypothyroid symptoms on this product. A huge disappointment.

Second came the production shutdown of the two generic makers of desiccated thyroid: Time Caps Labs and Major Pharmaceuticals. It’s the first step in the FDA’s compliance plan to corral all grandfathered-in drugs (drugs already in existence when the the FDA was created in 1938) and make them each prove the efficacy and safety of their medication via very expensive clinical trials.  i.e. over 110 years of safe and effective use of desiccated thyroid is not enough for the FDA?? We are still waiting to see the outcome of that plan with RLC  and Forest Labs.–the two who were actually in existence before 1938.

Third came demand being greater than supply and shortages. Because of informative patient websites like Stop the Thyroid Madness,  Sheila’s TPA-UK, Lyn’s ThyroidUK, Stephanie’s Natural Thyroid Choices, some areas of about.com (and other good websites I don’t mean to miss here), plus many fine patient forums and groups,  patients found out why they had continuing symptoms on T4 thyroxine, and demand for natural desiccated thyroid grew exponentially.

STTM then created a list of options for all thyroid patients until the shortages resolved themselves, and also created CDT (Coalition for Desiccated Thyroid) where patients could discuss alternatives in a supportive and factual atmosphere.

And we’ve seen some interesting experiences and comments:

The new Armour: One grain tabs started to appear on some pharmacy shelves the past month.  Other pharmacies have still been waiting.  Many patients appear to have switched to other alternatives, though. One gal still on it feels she is finding success by adding T3 to the amount of new Armour she is on.  Time will tell if patients can ever find success with the newly formulated Armour, and most feel it’s a huge loss.

Naturethroid and Westhroid: Patients reporting on their switch to either of RLC Lab’s two identical products report doing well, having to raise it slightly or lower it slightly, or just not liking them at all. Others have had a hard time finding it on their pharmacy shelves, but have been seeing some appear in the last few weeks.

Erfa’s Thyroid from Canada: When it became clear that the FDA was allowing this excellent product to be shipped to patients, many switched and had their prescriptions faxed to a Canadian pharmacy. Prices at many of those pharmacy websites were doubled after prescriptions started to come in from the US. Most patient who stuck with it seem to love it, reporting you can do it sublingually, as well. A few haven’t been impressed, but were finding their former success by raising it.

Compounded desiccated thyroid: In spite of being a more expensive option, some patients found success with this. Others learned they preferred the filler to be Acidophiles.  If not the latter, Microcrystalline Cellulose was preferred over Methyl Cellulose–the latter which appeared to lessen the effectiveness of the compounded thyroid.

Synthetic T4 and Synthetic T3: some patients switched back to the synthetic combination, but many report that it hasn’t been as effective as desiccated thyroid was.

Other options: Patients moved to OTC products like Nutri-Meds, etc, which can be much weaker. Others sought desiccated thyroid from other countries and have found success.

So I’d like to hear from all of you.   Did you go back to synthetic T4?  What desiccated thyroid did you switch to? What worked and why? What didn’t work for you and why?  What product do you hope to switch to once you run out of your current meds?

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Two topics: Let’s talk iodine, plus a UK lab will analyze Armour, says Sheila of TPA-UK!

iodine_atomI confess that I hated my Chemistry class in high school, even if Mr. Bowen tried to make it interesting and favored the girls over the boys in class.  But lo and behold, one of those elements on the Periodic Table ended up having a significant role in all or our lives as thyroid patients: iodine.

Iodine can be found in every inch your body, but is especially prevalent in your thyroid, which makes it an interesting element for those of us with thyroid disease.  The active thyroid hormone T3 (triiodothyronine) is made up of three iodine molecules, and the storage hormone T4 (thyroxine) has four iodine molecules. In fact, without proper amounts of iodine, your thyroid wouldn’t even function well.

An optimal amount of iodine has also been shown to improve breast health, provide cancer protection, remove toxins like Bromide, fluoride, mercury etc…and in some cases, has helped thyroid patients either lower their dose, or even get off thyroid treatment. Thyroid patient Diana tells of getting off thyroid treatment due to iodine on the Stories of Others page.

***This Thursday evening on the Thyroid Patient Community Call on TalkShoe, we’ll have guest Stephanie Buist, owner of the Yahoo group Iodine and a 9-year thyroid cancer survivor who strongly feels iodine has been a huge factor.   We’ll explore how much iodine a person needs, the loading loading test, the best sources of iodine supplementation, whether you need iodine, as well as controversies with iodine use, including Hashimotos disease or bad reactions.  Times for the call are 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern. You can listen right on your computer, or call to talk directly to Stephanie and Janie. Join us!

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ArmourtabletsUGH-1Sheila Turner of TPA-UK  (Thyroid Patient Advocacy-UK www.tpa-uk.org.uk) is starting the ball rolling on something very interesting:  they have contacted a lab in the UK who will do a qualitative analysis of the old Armour vs. the new reformulated Armour to get a breakdown of the ingredients, and potentially give us an idea WHAT is causing thyroid patients to have a return of their hypothyroid symptoms since Forest reformulated Armour in 2009.

However, says Sheila, this will cost in the region of £600 to £700 (approximately $1100).  Says Sheila, “If there are enough patients who are willing and able to help raise the funding required by giving whatever we can afford, we could finally get the answer as to which changes have been made in the new formula and whether this includes changes in the active (as some have suggested) and the inactive ingredients and put this baby to rest once and for all.”

You can contact Sheila at the above website and make a pledge.  As I write this, they have already have £100 pledged.

UPDATE: Stephanie above has agree to be the ‘Pledge and Money Collector’ for the lab work needed to analyze the old vs new Armour . She can be contacted at ladybugsandbees@sbcglobal.net

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FDA is not requiring form when you order Erfa’s Thyroid

CloudSilverLiningSometimes there is a silver lining with the storm cloud of backordered US desiccated thyroid.

Erfa, the makers of the Canadian version of natural desiccated thyroid, simply called “Thyroid”, has recently announced that the FDA is not requiring the extensive FDA Form 1572 from US citizens and their doctors when they fill their prescriptions from Erfa directly. i.e. it’s now a lot easier to get your prescription filled directly from them.

http://www.erfa-sa.com/thyroid_usa.htm

And those who have started to use Erfa’s Thyroid report being quite pleased. A cherry on top is that Thyroid has that old sweet taste we used to all like with the old Armour, and it can be done sublingually as well! You can see the ingredients here.

Also, I am continuing to get emails from patients that both Armour and Naturethroid is starting to appear on pharmacy shelves, even if in small quantities.  I’m personally not too excited about Armour reappearing if Forest continues to make the reformulated version. Just too many patients reporting a return of hypo symptoms, even when they raise it, plus new symptoms of undertreatment and/or challenged adrenals thanks to the reformulated version. Sad. Oh how we will all miss the old Armour.

In the meantime, here are options for thyroid treatment we all have until we see a good return of desiccated thyroid, including Naturethroid and Westhroid. They are all far, far better than being on T4 alone like Synthroid, Levoxyl, levothyroxine, et al. You’ll also note compounded thyroid, which can be a good option, and you can read about on a recent blog post.  Australians happily use compounded in their own country. Any option you and your doctor choose may mean a readjustment by your body, by the way.

Want to talk to other patients on how they are dealing with the shortages? Join the Coalition for Desiccated Thyroid.  Or if you simply need patient feedback about your hypothyroidism, go to the Talk to Others page.  Remember that no patient group is meant to be a substitute for your relationship with your doctor.

**The next Thyroid Patient Community Call will be held Thursday Oct. 8th on TalkShoe, and our topic will be iodine and your thyroid with patient expert Stephanie Buist. Come join us and listen right on your computer, or you can also talk live to Stephanie or Janie with your questions.

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Interesting information about Compounded Natural Desiccated Thyroid

We had a great Thyroid Patient Community Call Friday night on TalkShoe with John Voliva, RPh, the President of Hooks Apothecary in Evansville, Indiana. Hooks Apothecary is a compounding-only pharmacy that has been in existence for ten years and is a small and high quality family-owned business.

And with our current shortage of desiccated thyroid via the tablets we were used to, compounding pharmacies are a good alternative in the meantime. Here’s what we learned from Mr. Voliva:

1) Different compounding pharmacies will use different fillers. Hooks Apothecary, for example, uses powdered acidophiles, the “active culture” which helps replace the good flora in your gut and improves digestion.

2) Compounded desiccated thyroid can be more expensive for two reasons: they acquire smaller amounts of the powder as compared to the huge amounts obtained by a pharmaceutical like Forest, and it takes time to compound it.

3) A good compounding pharmacy will give you the Certificate of Analysis right when you ask for it, and you should ask for it. This Certificate will tell you how much T4 and T3 is in one grain..and it’s not always simply 38/9 mcg.  It could be 35/8.6 or 39/8.5 per grain…for example.   Find out because there are allowed deviations of 10 mcg +-.  A really good pharmacy will shoot for an even better deviation and will also produce that Certificate right when you ask for it, not a day later. To not receive that documentation right when you ask implies they really weren’t paying much attention to the deviation.

4) A compounding pharmacy will get better deviations when they create a 65 mg grain of compounded desiccated thyroid than when they create a 60 mg grain.

5) Top notch Compounding Pharmacies will be accredited by, or be close to completing the steps towards, the Pharmacy Compounding Accreditation Board.

6) Compounding pharmacies can’t make a desiccated thyroid trouche because of the problems with heat in the processing of the trouche.

7) Mr. Voliva feels it would be too easy to overdose with transdermal (on the skin) desiccated thyroid.

8 ) Compounding pharmacies, via their 5-6 distributors, get the powder from American Laboratories.  But not all compounding pharmacies will be as diligent as others to make sure the deviation is closer to 5%.

9) If the compounding pharmacy is getting their powder via the distributor PCCA (Professional Compounding Centers of America), you can be assured you are getting a good product.  Ask the pharmacist where they are getting it.

10) Compounding pharmacies generally have plenty of desiccated thyroid powder.

My apologies to a group of callers whose chat questions I wasn’t able to see. I have sent a question about that to Talk Shoe’s Customer Support to find an answer before the next Community Call. But on the good side,  the audio worked on everyone’s computer.

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Little clues we might be seeing a return of desiccated thyroid??

raindropsSurely 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.

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