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Category: shortages of desiccated thyroid

Electrolytes, Stress, A1C and diabetes, FDA, Las Vegas and more!

I’m amazed at lingering problems since being on T4: Though I’ve been on desiccated thyroid for 8 years, and do quite well since correcting low ferritin twice thanks to the lousy T4-only treatment, I discovered that my RBC magnesium is low, as I suspect my RBC potassium is, as well–all probably down due to chronic economic stress from this lousy economy. But it underscores that we all have to be vigilant and not hesitate to periodically get minerals and electrolytes tested, especially RBC (Red Blood Cells), as well as anything else your doctor recommends, or you read about. Labs you can do yourself are here, then share with your doc. You can read about potassium issues here.

Under stress with the economy or the holidays? When stressed, I love and use the herb Ashwagandha. It’s been used for thousands of years in Ayurvedic healing, helping your immune system and stress response. High dose B-vitamins are said to help counter anxiety and depression. Vitamin C is huge for your adrenals like the B’s, and has been known for years to counter the effects of stress. In fact, stress depletes it, so they state you are wise to raise it when under stress. (Is Vit. C why I never got adrenal fatigue when I deserved to get it? I always took a lot.) Also recommended include the herbs Valerian Root, Marshmallow, Lemon Balm, Chamomile tea, Passionflower, and more. But first do research on any herbs and talk to your doc.

Hypothyroidism can falsely raise your A1C, implying you have diabetes even with normal blood glucose. Just got word from thyroid/adrenal patient Jackie about this study concerning the A1C test, here. In turn, those on thyroid treatment saw their A1C fall. We don’t know what the thyroid meds used were, but imagine even better results if on desiccated thyroid, which many patients report does a much better job than T4, especially in the presence of optimal ferritin/iron and adrenal function.

Don’t be complacent: register yourself: Sheila of TPA-UK is working to create a register of patients who have had continuing hypothyroid symptoms while on T4. After she creates this register of patients, which right now only involves a couple of questions, she will create the a Worldwide Register of Counterexamples to Levothyroxine (T4)-Only Therapy for. Register yourself here. This will also run alongside Dr. Gordon Skinner’s Worldwide Register, which you can also be a part of here.

Listen to a new video produced by the FDA about drug shortages here. I wonder what our own 2009 shortages with Armour and Naturethroid played a role in this video? Wonder if the FDA will ever admit that they were partly to blame for this shortage by shutting down the 2009 generics? Has anything been left out of this video?

No, Las Vegas Review-Journal. Hypo get undiagnosed because of the lousy TSH, not “subtle” symptoms. Yes, this journal did a recent article, quoting AACE as stating half of thyroid patients remain undiagnosed. The article then states it’s probably due to symptoms being very “subtle” or “very similar to other health problems such as anemia, fatigue, depression, slow metabolism and a wide array of other diseases.” GROAN. It would be nice if these articles on hypo got it straight: hypo remains undiagnosed because of the lousy TSH lab test, which too many Endocrinologists worship, and because they fail to noticed the obvious symptoms of a hypothyroid state, which include anemia, fatigue, depression, slow metabolism and a wide array of other diseases. i.e. those ARE the symptoms of hypo, not “other health problems”. When oh when will reporters DARE to state what patients have learned?? (Oh, and guess who included a link to this article in their email Thyroid Weekly? The Endocrinologist-loving, TSH-loving American Thyroid Association.)

Have a great holiday season!!

Janie

P.S. HO! HO! HO! The publishing company will send a book for you to a friend or loved one for a Christmas present. Go here.

15 replies

Are we running out of desiccated thyroid powder???

And now that I have your attention, here’s the answer straight from the mouth of Kenny Soejoto, Chief Operating Officer of the only North American maker of desiccated porcine natural thyroid powder (American Laboratories): a firm NO!

“We have amply supply and so do the distributors for compounding pharmacists”, underscores Soejoto when I chatted with him today.

He also added in response to the recent shortages: “We didn’t spare an expense to push it along”. i.e “American Laboratories have caught up with all backorders, with the exception of one major company which has tight specifications, but they should be caught up by the first quarter in 2010”, explained Soejoto.

So what about specific rumors we keep hearing??

  1. My compounding pharmacy said they weren’t able to get it. Kenny explained that a small compounding pharmacy often can’t afford the minimum order that American Laboratories requires, nor does the smaller pharmacy want that much, which is an 110 lb drum of powder. So, says Soejoto, they need to contact their distributor, who is the middle man between a compounding pharmacy and American Laboratories. “The distributor for compounding pharmacies, “ explained Kenny, “will buy the larger amounts, make smaller packets, and then sell those to the compounding pharmacies”.
  2. American Laboratories can’t be the only North American makers of powdered thyroid because my compounder told me a different name. The different name you heard is the middle man mentioned above–a distributor for the thyroid powder to the compounding pharmacy. But that distributor got their supply from American Laboratories.
  3. My regular pharmacy said there is a supply issue for the brand I wanted. Again, Kenny explains there is no supply issue–they have plenty. Any pharmaceutical company that makes desiccated thyroid has to have ongoing credit worthiness and documentation before AI can sell to them. Also, we are simply experiencing continued demand being greater than supply, and it can take time to catch up. i.e. there may be more to the story than you hear under any comment about a supply issue problem.

In conclusion, Kenny Soejoto said they simply got into trouble from the growth of interest in desiccated thyroid the past few years, and they are much better prepared. Even Europe is inquiring more about it, he said. And my response to him?? Get ready, because you are doing millions of potential thyroid patients a HUGE favor by making it, and we’re going to continue to spread the world about natural desiccated thyroid. 🙂

Check out posts below about other important issues, including more from Erfa, plus the problem of cellulose in compounded and regular desiccated thyroid.

*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!

12 replies

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!

31 replies

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

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

85 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