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Is Cellulose the real problem in desiccated thyroid meds for many?

Screen Shot 2015-08-05 at 12.53.55 PM(This blog post is updated to the current day and time. Enjoy!)

When Forest Labs reformulated Armour desiccated thyroid in early 2009, they stated they increased the filler Microcrystalline Cellulose, and decreased the Sucrose (sugar). And all of sudden, the tablets became impossible to do sublingually–a method so many of us loved and which seemed to give even more of a punch.

And we were left wondering in 2009 why they would change a particular quality (being able to do the tablets sublingually) that thyroid patients praised so heavily?  Positive opinion among patients for Forest Labs back then slipped several notches. (Forest Labs was bought out by Actavis in 2014)

But the real cuckoo’s nest for many thyroid patients still on Armour in 2009, who knew firsthand the life-changing benefits of natural desiccated thyroid, was a maddening return of serious hypo symptoms on the 2009 Armour with its increase in cellulose, and subsequent new stress on their adrenals, sooner…or later! You can read several horror stories in the comments of the post below, or go here.

So patients turned to other alternatives, which at the time was Naturethroid and Westhroid by RLC Labs. (Naturethroid stopped working as well in 2018)

So what has been the common thread in the most problematic desiccated thyroid products?

It has always been CELLULOSE, a plant fiber, and more commonly known by the trade name Avicel. And what does fiber do in your stomach? Inhibits absorption. Armour’s cellulose was raised, and bamm…problems.  Compounded desiccated thyroid, with cellulose as a filler, has been problematic for many patients with a return of hypo symptoms, especially if it was Methyl Cellulose, a larger particle size product. But some have even had problems with compounded containing Microcrystalline Cellulose, the smaller cellular product. And a certain body of patients even had problems with Naturethroid back then before it became scarce for awhile. And Naturethroid used cellulose as a filler.

Note: With all the complaints, Forest Labs did change something about Armour by mid–to-late 2010. Though it never returned to what it was before 2009, it did become a softer tablet and patients did better on it. But we certainly learned a big lesson about cellulose in our NDT pills..

Is this problem true with T3-only products?

Yes. Patients noted that generic T3 was far less effective than the brand name Cytomel (both Liothyronine Sodium)  And what filler is up to 70% in the generic T3?  CELLULOSE.  

What does literature say about the use of Cellulose as a filler in medications?

Plenty. Cellulose is from wood. Wood is fiber. And fiber in your gut affects absorption. From http://www.umm.edu/altmed/articles/fiber-000303.htm we get this:

* Dietary fiber has been reported to lower the blood levels and effectiveness of tricyclic antidepressant medications…Reduced dietary fiber intake increased the blood levels and improved symptoms in these patients.

* While fiber supplements may help to regulate blood sugar levels, they may also interfere with the absorption of anti-diabetic medications….Therefore, fiber supplements should not be taken at the same time as these medications.

* Taking soluble fiber such as psyllium with carbamazepine (Tegretol), a medication used to treat seizure disorders, may decrease the absorption and effectiveness of carbamazepine.

* Fiber in the form of pectin (from fruit) and oat bran reportedly reduces the body’s ability to absorb cholesterol-lowering medications known as “statins,”… and could lead to decreased effectiveness of these medications.

* Fiber supplements may reduce the body’s ability to absorb digoxin (Lanoxin), a medication used to regulate heart function.

* Clinical reports suggest that psyllium or other soluble fibers may lower lithium levels in the blood, reducing the effectiveness of this medication.

* In one clinical study, the fiber supplement guar gum reduced blood levels of penicillin.

Fast forward to the present

If you are using a compounded desiccated thyroid medication, it’s strongly recommended to request powdered acidophiles, also spelled acidophilus, as your filler.  One gal states her compounding pharmacy uses powdered Ginger (but beware of too much Ginger if you have Mitral Valve Prolapse. It can cause palps if you take too much–my experience).  Others might use powdered Vitamin C.  See what other fillers your compounder can offer.

Another possibility is Cellulase, an enzyme which helps the splitting and breakdown of cellulose, It’s found on most supplement websites.

JanieSignature SEIZE THE WISDOM

*Join the STTM Facebook page for information, tips and inspiration!

* Become an informed thyroid patient! //www.laughinggrapepublishing.com

74 replies

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?

107 replies

Australia is adding iodine to their bread

kangarooOn the heels of an excellent Thyroid Patient STTM Community Call on iodine with guest Stephanie Buist (see below), it was just announced by the Food Standards Authority of Australia and New Zealand (FSANZ) that Australia will add the micronutrient iodine to bread. New Zealand already started that practice in September of last year.

The announcement mentions the importance of iodine to thyroid functioning, as well as for infant brain and nervous system, both during and after pregnancy.  For the latter, it states “Not having enough iodine during pregnancy and early childhood can cause developmental delay and lead to reductions in mental performance. This damage prior to 2-3 years of age is irreversible.”

Apparently, the  soils of Australia and New Zealand are not too prolific in iodine, and patient levels have been revealing that fact for decades. But Stephanie Buist, the friendly and knowledgeable owner of the yahoo group Iodine, as well as a thyroid cancer survivor, states that even most US soils are becoming depleted.  It’s not just a problem of the northern US “goiter belt”, Europe or Africa anymore.

The importance of iodine goes even farther than thyroid functioning, pregnancy and infant brain development. It has a key role in breast health, your immune system, bones, estrogen metabolism, lung health, eyes, and cancer prevention. The iodine4health website lists many benefits as well as areas not understood yet.

How much do we need? Experts like Abraham, Flechas and Brownstein will emphatically state that we probably need more than is recommended.  At least 50 mg of iodine may be necessary for awhile to bring your levels back up to healthy amounts, besides stop the the side effects of iodine on hashimotos disease.  i.e. thinking you are getting enough iodine naturally from foods, or even from natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or compounded, may not be so.

How do you find out if you are iodine deficient? Stephanie stated on the Community Call that the majority of folks probably are deficient. But if you want to be sure, you can do the Iodine Loading Test.

What are good iodine supplements? Lugols is an liquid variety, and my husband and I personally use it in our morning juice or Emergen C (my husband uses Emergen C in water since he’s diabetic, and it’s a good way for him to get his Vitamin C).   In pill form is Iodoral, developed by Abraham.  You can google either and find some website sources. Also good to take with iodine supplementation is magnesium, Vitamin C, and selenium, which helps with the detox effects.

You can listen to the recording of Stephanie’s and my conversion on iodine by going to the link below for Episode 5 of the Thyroid Patient STTM Community Call. (Yes, I will correct the skipping you hear in my voice next time.)

Read Diana’s experience with iodine helping her get off desiccated thyroid. Not something we can all do, but it happened to her!

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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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Yes, desiccated thyroid is making its way to pharmacy shelves!

shortage

With all the panic among thyroid patients of the last several weeks, we are now seeing light at the end of the current tunnel of desiccated thyroid shortages. More reports are coming in by patients that it’s appearing on shelves at their local pharmacies, including both Armour and Naturethroid. Sure, it’s a trickle compared to the amount of US patients that need it. But it’s a sign of hope of more to come.

On the CDT (Coalition for Desiccated Thyroid) yahoo group, where patients have been discussing the shortages and finding places to get their desiccated thyroid, patient Elenor gave just one more example:

“After losing “my” Wal-Mart’s last left-over bottle of Naturethroid to some other thyroid person (lucky him or her){wink}, I called around to pharms — and Sam’s Club Pharm two towns over had just gotten ONE bottle of 60mg Armour in yesterday. (I did also find a CVS that had a bottle and a half of the 90mg Armour — so there are some dribs-and-drabs left around… My doc wouldn’t write for me to get that too…) (YAY!) Emailed my doc’s nurse begging her to do it right away — which thankfully she did, so they dispensed it “to me” and I can pick it up today! Down to three days left in my possession, so … WHEW!”

Elenor concluded: Still gonna see my doc 5th Oct and try to order 500 tablets from Canada. I do not EVER want to be scrambling like this again — for ANY reason…

And we all agree with you, Elenor!

Clearly, our current shortages were caused by two factors: demand being greater than supply thanks to websites like Stop the Thyroid Madness (STTM), forums, groups and others, as well as the remarkably poor timing by the FDA in causing the only remaining generic makers of desiccated thyroid to cease production.

And in case you haven’t caught up with what’s going on, you can read a summary of the history about the FDA and regulations which will explain what we will have to face for desiccated thyroid in the future, which is our real challenge.

**JOIN US TONIGHT for our weekly THYROID PATIENT COMMUNITY CALL hosted by Janie Bowthorpe. We’ll have an open topic night and perhaps a surprise guest (still waiting on confirmation on that). Let’s talk about the shortages, ways to continue treating during this time, and more. NOTE that I have moved up the times by one hour. Just click on the link and you’ll see a countdown of when it starts: 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern.

27 replies