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Dear Erfa Canada: Stop this nonsense and change your desiccated thyroid back!!

Screen Shot 2014-05-08 at 8.13.37 AMNot again. 

It appears that one more time, a manufacturer of what was once a very good natural desiccated thyroid product has ruined it. 

In 2009, thyroid patients whose lives had changed in major and positive ways thanks to Armour, a brand of natural desiccated thyroid (NDT) made by Forest Labs, saw their hypothyroidism come right back. Why? Forest, in all their wisdom, decided to raise the cellulose, lower the sucrose, and make Armour a much harder tablet. And somehow in all that change, patients reported all their hypothyroid symptoms now returning. It was a disaster.

As a result of the above, thyroid patients moved to other natural desiccated thyroid products, and Erfa of Canada was one. And oh did patients love it. It was made like the old Armour, and we could also do it sublingually–a method many of us like. Erfa calls their NDT product simply “Thyroid” and it has always come in sizes of 30 mg, 60 mg and 125 mg.

Fast forward to 2014, and patients who have been doing wonderfully on Erfa are now reporting a major return of their hypothyroid symptoms!

And what’s the scuttlebutt we hear from Dr. Henri Knafo, the Medical Director for Erfa Canada?? That they changed the facility from which the tablets were made but not the ingredients. Really??

This is particularly disturbing for European patients whose lives have changed in positive ways thank to NDT, and know the inherent problems with T4-only.

All too many European doctors and their esteemed medical organizations are clueless about the efficacy of Natural Desiccated Thyroid and turn their backs on prescribing it. Like too many American and Canadian doctors, they worship the ground that T4-only medications unfortunately walk on, and fail to see the widespread problems that thyroid patients have on T4-only. So patients suffer. But luckily, thyroid patients in Europe had been pleased about being able to find Erfa in a few places and thus, see their lives change in major positive ways.

But that has now changed for European Thyroid Patients thanks to this latest egregious change in Erfa’s Thyroid, and the situation is horrific for patients once again, just as it was in 2009 when Forest changed Armour.

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What can you do??

  1. If you were once doing wonderfully on Erfa, and now see a return of your symptoms, email Erfa’s Medical Direction here: henri.knafo@eci2012.net  Spell out how you were BEFORE the change, and what is going on SINCE the change. And email him multiple times, if necessary. Make it clear. Make it often.
  2. Post here what has happened to you on the “reformulated” Erfa. This is a widely read blog post and website for informed thyroid patients as well as doctors.

In the meantime, if you need to move over to another brand…or if you CAN change over where you live….here are your options for better thyroid treatment.

PLEASE POST THE LOT NUMBERS of the bottles of which your symptoms returned!

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UPDATE May 12, 2014: A gal from Sweden heard from Erfa today, and they are admitting there have apparently been a bad batch or batches. I’ll keep you updated.

UPDATE May 15, 2014: Dr. Knafo has posted the following:
Dear all, 

As you know we are currently investigating all the complaints that I received and I would like to ask for your help in order to complete the investigation.

1.       Do you have a lot number and exp date written on the bottle of Thyroid ? If so please give it to us.

2.       Can you tell us what strength(s) you bough (30, 60 or 125mg) ?

3.       Also please mention what pharmacy you bought the product from.

Once this information is received we can go forward with the investigation.   Please feel free to email me if you have other questions

Dr Henri Knafo, MD, M.Sc, B.Sc

Email : Henri.knafo@eci2012.net

 

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* Learn why Synthroid or other T4-only meds by themselves are not the way to go in your thyroid treatment.

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.

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