Another nightmare for thyroid patients who depend on Natural Desiccated Thyroid.
If you are new to this subject, 2014 saw new batches of the Canadian Erfa Thyroid come out, along with patients worldwide reporting a return of hypothyroid symptoms in the worst way…sooner or later. It was eerily similar to what happened with Armour thyroid in 2009 after Forest Labs changed the way the pill was made.Â
This morning, I received a message from a thyroid patient who heard from Dr. Knafo, the Medical Director at Erfa Canada 2012 Inc. He stated to her:
We just received all the retesting on the product and everything looks fine on our end. Did you have a blood test done ?
In other words, when you look at his last question, the implication is the same that has been stated to others: that the symptoms which she has seen return on the new Erfa Thyroid are about HER, not about the pills.
But we also now have an official announcement from Dr. Knafo, and is exactly what I feared would be stated:
Dear All,
I wanted to thank all of you for your response and wanted to update you on the results we got from the retesting done by an independent lab. All the side effects reported were sent to Health Canada and all the retesting were done by a reputable independent lab.
We got about 70 patients reporting to us and there was 55 lack of efficacy reports. Half of the time we had the lot number and we could do an analysis of which lot were involved. There was NO relations between the batches involved and the side effects reported as many batches (50%) were trace back to our older production. Regardless, we decided to retest the batches that were involved (both from the older factory and new one) and sent everything to an independent lab.
There was no difference in concentration from one batch to the other. We did not change our formulation, suppliers nor our manufacturing technique.
We have over 10,000 patients in Canada only and reports from Canadian patients were much less in numbers. We cannot explain why many of you are experiencing those symptoms however I think the right approach is to take every single case separately and understand if there is no other variables involved. The number of reports are however consistent with the increase of sale (we sold 3 times more Thyroid in the past year).
The test results are available in our office for anyone that wants to consult them.
I hope this update clarify a bit more the situation and action we put in place. Please feel free to contact me anytime. Regards,
Dr H. Knafo Medical Director ERFA Canada 2012 inc.
And I want to make my response to Dr. Knafo public here:
Dear Dr. Knafo,
Thank you for the kind way in which you expressed yourself concerning the testing of the “new” Erfa Thyroid by an Independent lab.
I want to underscore to you that the reason Erfa has seen a three-fold increase in its sales last year is because Erfa used to be a great product for all involved. Patients had found it to be as excellent as the “old” Armour used to be for decades, plus they have always loved that they can do Erfa Thyroid sublingually. Additionally, many patients in Europe have had access to Erfa, which was important when knowledge about Natural Desiccated Thyroid is so pitiful in Europe.
Understand that I have worked directly with patients for 12 years as an activist for better thyroid treatment. Natural Desiccated Thyroid (NDT) changes lives and is proven over and over by worldwide patient experiences to be a much better hypothyroid treatment than T4-only. It even edges out the combination of T4 and T3 by its positive effects!
Granted, there are many patients who have reported not doing well on NDT over the past decade. But that wasn’t because NDT didn’t work. We figured out early on that there are two main reasons why NDT may not seem to work: a cortisol issue (low or high), and/or low iron. So patients learned that they must get the right testing for both of those, know how to read the results, and treat both before they will do well with NDT. You can read about all this here: //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me
And of course, some reported NDT not working because they were being held hostage to the TSH lab test, which we as informed patients know is the WORST test to be dosed by. You will remain under-dosed if a doctor goes by the TSH range. Read this: //www.stopthethyroidmadness.com/tsh-why-its-useless
So because of all the above, I had to discern if all these complaints about the “new” Erfa Thyroid were actually because of any of the above.
But Dr. Knafo, I quickly saw that no, the vast majority were not. The bulk of complaints…and bad experiences…have been coming from patients who were doing wonderfully on Erfa Thyroid for awhile, only to see their symptoms return exactly when they started using the pills that were now being made at a different facility.
You stated in your announcement: There was no difference in concentration from one batch to the other. We did not change our formulation, suppliers nor our manufacturing technique. What is missing from that statement is that you have, in fact, stated to others than Erfa Thyroid did change the facility in which the pills are made. And as far as the “manufacturing technique”…patients clearly see a difference in the “new” batches. They are now slightly shinier, the indentations are deeper, and the new pills have a blotchy look that wasn’t there before.
The photo above shows the difference between the old and new.
Of course, we don’t know if what we are observing in the new pills explains anything. All patients DO know is that all-too-many of them are seeing their hypothyroidism return with the new Erfa Thyroid.
I think you are a sincere man, Dr. Knafo. We appreciate that about you. But…something has, in fact, changed in Erfa Thyroid. And to dismiss the growing overall body of patients worldwide who are not doing well anymore on Erfa thyroid is a bad move, just as it’s insensitive to state that that there are no other variables involved so thus, it must be about the individual circumstances.
P.S. Go back and read all the comments on the May 8th blog post linked above. It’s patently clear that the new Erfa Thyroid has changed, whether testing says otherwise.
UPDATE: thyroid patient S. compiled the following as of August 2015 and these represent expiration dates:
The good batches (no one reported them as bad, and one or more people reported them as good) are: 8/15 (reported by 3 people) and 4/17 (4 reports).
Some batches were reported as both good and bad by different people: 5/17, 7/17, 7/16, 2/17, 10/16, 3/15.
Some were reported only as bad: 11/15 (3 reports); 11/17 (1 report); 3/16 (3 reports); 8/17 (3 reports).
No reports for 1/17, 3/17 or 6/17 so these are unknown.
It appears that one more time, a manufacturer of what was once a very good natural desiccated thyroid product has ruined it.Â
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.
What can you do??
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.
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!
***********************
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,Â
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
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The 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:Â 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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Just had a good conversation with Dr. Henri Knafo, the Director of Medical Affairs at Erfa Canada, Inc.
On my post below from yesterday, you will see hopeful information on getting this excellent Canadian desiccated thyroid. And below is more information you have been asking for as patients who know the efficacy of desiccated thyroid.
Erfa’s “Thyroid” comes in three strengths: 30 mg, 60 mg, and 125 mg. Amounts you can order, and costs, are as follows:
30mg           500 tablets $52.00 US;   100 tablets $18.00 US
60mg           500 tablets $70.00 US;   100 tablets  $39.00 US
125mg         500 tablets $100.00 US;  100 tablets $ 50.00 US
Erfa will charge a 10$ handling fee (for first time users) and shipping is around $20 US. Knafo states the prices are equivalent to Armour.
Erfa’s Thyroid has been in production for 30 years and they have 5000 Canadian patients on it.
Erfa’s Thyroid is approved by Health Canada (their equivalent to FDA). Erfa spoke to the FDA, and in order for their desiccated thyroid to cross the US border, you have to fill out and sign the FDA patient study form which is mentioned below.
Erfa’s Thyroid is made in Europe with the raw materials, and they bought an excess of it. So there will be no problem getting it and they expect no shortages the rest of the year.
One canadian pharmacy you can use (and is not associated with Erfa) is the Canada Pharmacy Online.
The 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 
Just had a good conversation with Dr. Henri Knafo, the Director of Medical Affairs at Erfa Canada, Inc.