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.
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: https://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: https://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.
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,
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
* Have you signed up to receive notifications of STTM’s blog post?? Go to the bottom right of the home page on STTM and sign up!
* Need to talk to other patients? Talk to Others page. You’ll also see many other great groups who don’t bash other groups (I hope), care about patient experiences and wisdom over “opinion”, and can be friendly.
* Do you have the STTM books?? You HAVE to be informed to get well.
“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because it opponents eventually die, and a new generation grows up that is familiar with it” ~ Max Planck
NOTE: Though this post was originally written in 2011, it has been updated to the current date and time.
HOW DIFFERENT BRANDS OF DESICCATED WORK FOR SOME, NOT FOR OTHERS
Granted, we note from patient reports that all brands work based on individual reports of any brand.
But some patients, for a variety of reasons, feel they do well on some NDT’s, but not on others. It’s very individual. This may be due to the fillers in any product.
Or, there are some like me who had to switch from one desiccated thyroid brand to another, not because of fillers, but changes in the product. I, for example, was on the pre-reformulated Armour from 2002 to 2009, and successfully treated.
Then came 2009 when patients were reporting Armour not working as well anymore. It had been reformulated–the cellulose raised and the sucrose decreased. I just let my old Armour run out, and I started on Erfa Thyroid from Canada. And it was an easy and successful switch for me.
But even some batches of Erfa seemed to go bad in 2014, so I then moved over to NP Thyroid, which has been great to this day.
So I am an example of the way that all three did work for me, and simply had to change due to reported problems in the way Armour, or Erfa, was made.
What if any switch doesn’t result in good results?
For many, the NDT they have switched to works just as well, as happened to me. But for some, a switch has not been smooth. One brand seemed to serve them well, while another brand caused them to tank.
What causes the switch problems?
For many, it could be the adrenals. On one product, they may have felt fine, yet due to an underlying adrenal issue they hadn’t caught, a different brand with that “something different” may have been the umpff that revealed their adrenal problem.
For others, the issues on the new brand could be from a sensitivity to one or more of the fillers. You can read about all fillers in each brand here.
And for still others, there is a mystery of why one didn’t work and another did.
What has been your experience? What did you switch from and to? Armour? Naturethroid? Erfa? Compounded? Thyroid-S? Let’s share.
If I need to switch, how do I do it?
It’s pretty much an even switch. i.e. if I was doing well on 3 grains on one brand, I go on 3 grains of the other.
But if I wasn’t doing well on a brand, it’s important to ask one self four things:
Did I raise the current brand high enough? It’s common for hypothyroid symptoms to return on lower non-optimal doses. How to raise is explained here.
Do I have an issue with a filler??They can be looked at here.
Do I have optimal levels of iron? Because if your iron levels aren’t “optimal”, it can cause problems when raising NDT. Optimal has nothing to do with normal. See this page.
Have you ever heard of the gal who calls herself nonstickpam? I’ve known Pam for many years, and she has spent most of that time giving helpful advice on low carb eating and how to maintain your weight while dealing with thyroid and/or adrenal issues. Recently, she wrote an article for STTM about this very issue: https://stopthethyroidmadness.com/hypothyroid-and-weight-issues/
It’s a continuing travesty, and you see it in patient groups.
i.e.many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,
So what’s the problem?? It lays with our doctors and the entire medical profession.
Heavy-handed control over your medication:
You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).
Ignorance about adrenal insufficiency and treatment:
You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.
Thinking that falling in the range is optimal:
If a lab result within those numerical boundaries, which are based on a set of people a laboratory picked to come up with the range, says I’m normal, WHY do I still have issues??
Dismissing you:
You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.
RT3 huh?
You have strong suspicions that your Reverse T3 is too high thanks to low cortisol or low iron or Lyme or undiagnosed gluten issues, etc, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.
Look at me! Look at me!
You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet some or all of the above and below occurs with him/her or his “trained” associates.
Continued worship of the TSH lab test:
Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match whatsoever and improvement in our bone density and heart health.
Pharmaceutical addicts:
You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understanding from your doctor that these are ALL side effects of poor thyroid treatment.
The country you live in:
The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it. Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail, or like Denmark, refuses to dispense it.
Reformulations and Big Pharma apathy:
In 2009, then Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose, causing a massive return of symptoms in many. RLC also reformulated their Naturethroid to some degree, and though some patients still do well on it, others did not anymore. Erfa made some kind of change in 2014 which they denied, yet certain patients all over the world reported new problems they had never had before. You are left wondering WHAT is going to happen next!!
And there are more reasons you might want to bring up in the Comments part of this post.
So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so.
All-in-all, we still have a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.
P.S. Are you brave? Walk into your doctor’s office with the STTM shirt. And here’s how to find a potentially better doc.
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: 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!
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