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Month: June 2014

Read the mind-shattering realization by thyroid patients about what T4-only did to their hearts!

Screen Shot 2014-06-16 at 9.54.22 PMWhen my mother was in her 60’s, she had to have a heart procedure. It was scary. And at the time, I found it all very odd. There is no reported history in any of my ancestors of heart problems! Where did this anomaly come from?

It was only years later than I knew: her 30 odd years of T4-only use, which in her case was Synthroid. Not only did being on T4-only cause a daily need to nap, she was also totally dependent on antidepressants (which in turn made her emotionally flat) and she always had a weight problem. And, it caused high cholesterol and heart issues!

Today, patients realize that connection between their T4-use and heart-related problems. Here is what thyroid patient Carla sent me as one of many examples of a relationship between heart problems and being either hypothyroid or on a poor treatment with T4:

I had been on Synthroid for 12 1/2 years when I began to see certain problems coming along and getting worse. For one, my heartrate seemed to be rising. There were even times I literally felt like it was going to jump out of chest. Then there were chest pains. I just knew I was going to be one of those female heart attack statistics. I went to my family doctor, an Endocrinologist and a cardiologist. Hated driving in traffic to get to the cardiologist. But I got a fancy diagnosis of Supraventricular tachycardia (SVT) and worried myself to death.  Beta blockers were on the menu.

Fast forward, I found Stop the Thyroid Madness and then the FTPO forums, and convinced my doctor to start me on Natural Desiccated Thyroid and let me raise it to find the right amount for me. She was super worried about my heart in using NDT. I wasn’t because I had read how others had safely used it, and I followed my raises carefully. And I was right. My heartrate became normal! Normal!! I luckily didn’t have adrenal fatigue. 

I think back about all those years on Synthroid and realized that I had been seeing other problems almost from the beginning! I had depression. I had low iron. Minerals low. And I had doctors who dismissed me. And of course, I was a TSH disaster. TSH was normal; I was not. Year after year. Then I progress into heart problems? The makers of T4-only should be ashamed. 

And there are plenty of studies underscoring a connection between being hypothyroidism and heart issues:

  1. This abstract of the study underscores honestly that “restoration of normal thyroid function most often reverses the abnormal cardiovascular hemodynamics.” Cardiovascular involvement in General Medical Conditions: Thyroid Disease and the Heart
  2. This study outright admits that “Long-term levothyroxine treatment in young adults with congenital hypothyroidism is associated with impaired diastolic function and exercise capacity and increased intima-media thickness”  Long-Term Cardiovascular Effects of Levothyroxine Therapy in Young Adults with Congenital Hypothyroidism from The Journal Clinical Endocrinolgy Metabolism,
  3. This study states that “subclinical hypothyroidism is associated with impaired left ventricular diastolic function at rest, systolic dysfunction on effort, and enhanced risk for atherosclerosis and myocardial infarction.” Whoa. And continued hypothyroidism is what all-too-many thyroid patients report from being on T4-only Effects of Subclinical Thyroid Dysfunction on the Heart from Annals of Internal Medicine
  4. This one has always blown us away. It’s called Low-T3 Syndrome; A Strong Prognostic Predictor of Death in Patients With Heart Disease and underscores why the thyroid hormone T3 is so very important for one’s heart. Natural Desiccated Thyroid, just like a healthy thyroid, provides direct T3!

And there are many, many, many more studies showing the connection between heart problems and hypothyroidism. And eventually, we might see these studies catch up even better about the connection between T4-only and heart problems. The body is not meant to live for one of five thyroid hormones alone.

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Do you have a success story to share about how having T3 in your treatment reversed your heart problems. Use the STTM Contact form to let Janie know you want to send YOUR story and we’ll include it here!

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* Read more about T3 and your heart health!

* Did you know that those who had their thyroid removed due to cancer CAN be on NDT?

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* OOPS!! Erfa Thyroid NDT has caused a return of hypo symptoms in many patients!! Something is very wrong!

48 replies

Part II: Erfa Canada says new thyroid pills are fine: Thyroid Patients worldwide exclaim HOG WASH!!

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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. 

You can read about this travesty with Erfa Thyroid on the following May 8, 2014 blog post page, here: //www.stopthethyroidmadness.com/2014/05/08/dear-erfa-canada-stop-nonsense-change-desiccated-thyroid-back/  It is followed by a massive amount of posts, comparing batch numbers as well as symptoms which have returned. It’s all a must read!

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.

Sincerely,

Janie A. Bowthorpe. M.Ed.
//www.stopthethyroidmadness.com
https://www.facebook.com/StoptheThyroidMadness
//www.laughinggrapepublishing.com

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.

1,286 replies