2014 - Page 2 of 3 - Stop The Thyroid Madness

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

When 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 thisÂ anomalyÂ comeÂ 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.Â 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. Â 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 howÂ 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.Â

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 TSHÂ disaster. TSH was normal; I was not. Year after year. Then I progress into heart problems? The makers of T4-only should be ashamed.Â

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

This abstract of the study underscores honestlyÂ that “restoration of normal thyroid function most often reverses the abnormal cardiovascular hemodynamics.”Â Cardiovascular involvement in General Medical Conditions: Thyroid Disease and the Heart
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” Â Long-Term Cardiovascular Effects of Levothyroxine Therapy in Young Adults with Congenital HypothyroidismÂ from TheÂ Journal Clinical Endocrinolgy Metabolism,
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 HeartÂ from Annals of Internal Medicine
This one has always blown us away. It’s calledÂ Low-T3 Syndrome;Â A Strong Prognostic Predictor of Death in Patients With Heart DiseaseÂ 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!

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

June 17th 2014 48 replies

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

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

You can readÂ about this travesty with Erfa ThyroidÂ 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/Â 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.

June 12th 2014 1,286 replies

How Dawn healed her adrenals–an inspiring story everyone must read!

When I first had my thyroid removed in 2012 due to autoimmune destruction from Hashimotoâ€™s disease since age 10 and Graves disease for 6 years, I did not know what to expect. And like most other post-thyroidectomy patients, I was reassured by my surgeon that all it would take is for me to take “a little pill every day and things will be much better” (i.e. my surgeon referring to the Synthroid she prescribed for my post-op thyroid replacement)

What ensued after that was a nightmare that has lasted the past two years!

I went into heart failure multiple times from the inadequate replacement with Synthroid (T4 only medication). I was MISERABLE! Dizzy, heart racing out of the blue, internal shaking as well as nausea, severe fatigue and extreme irritability! I became a monster that even my own family did not recognize!!

STTM was discovered

Fast forward 9 months, and a good friend of mine came across the Stop the Thyroid Madness website and sent it my way. I ordered the book after looking through the website and realized I knew NOTHING about thyroid disease and proper treatment for hypothyroidism, and apparently neither did my Doctor!!

I made the switch to a working Natural Desiccated Thyroid like Armour e in March 2013, and things DID improve some. But the fatigue, shakes, dizziness and irritability continued! I flew off the handle at my husband, my parents, even my dogs (poor babies did not deserve it, but I was just out of control emotionally!) I thought I must be going crazy and feared I had developed a psychiatric disorder. In fact, my Endocrinologist suggested I see a psychiatrist to “work out my frustration and anger!”

It was my adrenals!

I started reading Chapter 6 in the revised STTM bookâ€“ All about ADRENALS!! I thought I was reading my life story all over again! I had 90% of the symptoms listed on the “symptoms of low cortisol” page on the STTM site. I tried Janieâ€™s at home testing and failed them all miserably! I ordered a 24 hour adrenal saliva cortisol test, and there is where I found my answer! See the results below:

Turns out I wasnâ€™t crazy! My adrenals were not putting out adequate cortisol to handle the increased stress of low thyroid levels and all my other life issues! I was LOW, LOW, LOW, slightly HIGH.

“How do I fix it?”Â

I considered using T3CM, but knowing that I was low Morning, Noon AND Evening meant that was not likely to help per other patientâ€™s experiences.

So someone suggested I try Thorne ACE (Adrenal Cortex Extract) to replace my low cortisol at those three times of day! I got it all ordered, read through the chapters in the STTM book. I added in high doses of Vitamin C (3,000mg per day) and high doses of magnesium (800-1,200mg per day) and started supplementing with Celtic Sea Salt and the Adrenal Cocktail (salt in water, plus minerals). I started feeling better pretty quickly with the sea salt and nutritional support added.

It took me several weeks of trial and error to get my symptoms under control and get the dose of ACE correct. I had to learn to take DATs (Daily Average Temperatures) to gauge whether or not the dose was the right one. I tracked symptoms, doses and temps daily. I adjusted up every few days until my temps stabilized and my symptoms became more minimal. I was still without a good doctor at this point, so I was self-treating using the knowledge I got in the support groups and in the Stop the Thyroid Madness book.

A job change was necessary

I realized that I could not continue under the extreme stress of working the 12 hour nightshift in a busy hospital. I was burning the candle at both ends, and everything I read about adrenals said reducing stress and sleeping on a set schedule was a MUST. So, I spoke with my spouse, and we decided I would quit my job and look for something less physically and emotionally demanding, and something with day-time hours exclusively. I was off work for 3 months while searching for a new position, and though money was tight and things were stressful, changing to sleeping at night once again made a HUGE difference (I put myself on a strict 10 pm-7 am sleep schedule.) I cut caffeine, sugar and alcohol out completely â€” the caffeine was very tough to give up, but I did it! Being out of the high-stress work environment was extremely helpful in healing adrenals!

A saliva retest

I was feeling better little by little, but the fatigue remained, especially in the afternoons. I would just crash around 2 pm and couldnâ€™t do much of anything until late in the evening! I would get periodic adrenaline reactions (especially late in the afternoons.) I would sweat profusely, get shaky inside, feeling like my heart would pound out of my chest! I finally got in to see my “good thyroid doctor” in November 2013. He immediately said he wanted to take me off ACE for two weeks and retest my adrenals to see if I had made progress. Here is what they showed: (the retest is the one that says “current” taken in November 2013:

As you can see, my Morning was showing improvement, but the noon and evening levels slid to a lower level than when I started ACE.

I spoke with my good thyroid doctor, and he suggested we lower ACE in the morning, add more at the noon/evening doses and slide the times a bit earlier than what I had been taking. Things continued to improve, and I got my afternoons back! By then I was back working full time up to 50 hours per week. The new job was emotionally stressful, but not physically so. I continued to get adrenaline reactions in the late afternoon, but they became less and less as time went on. I started feeling completely recovered by Feb 2014. I still had low thyroid levels due to hormone resistance, but adrenals symptoms had completely resolved. I weaned off ACE and did just fine. I kept up with the nutritional support of high dose Vitamin C and Magnesium and did the adrenal cocktail and celtic sea salt if I needed it, but it was rare for me to need those at this point.

Victory!

We waited three months of me being off of ACE and retested to see where I stand! Here are the new, post-treatment levels. Taken end of April, 2014:

As you can see, my levels are now VERY close to optimal! I did notice that my nighttime level has gone up some, so my doctor had put me on Zinc to help reduce that, and Melatonin as needed (though I donâ€™t really take it more than once per month.)

I discovered recently that I have Lyme disease and chronic infections which is the cause of my inflammation and continued low thyroid levels, despite taking Nature-Throid and Cytomel T3 at high doses. We hope that treatment for Lyme will finally help get inflammation down and improve my thyroid levels to liveable again!

I cannot be more thankful to Stop the Thyroid Madness for helping me get my life back! There IS life after Adrenal Fatigue!! I would say healing my adrenals has been the single most important thing I have done to feel better and function better on a daily basis. My family and my dogs no longer fear me and I have my laidback personality back once again, and my house is now at PEACE!! Donâ€™t give up hope!! STTM will help you get better if you follow it!

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May 13th 2014 82 replies

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

Not again.Â

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 thyroidÂ (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 Â 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!

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

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

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

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

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

Email :Â Henri.knafo@eci2012.net

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* 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.

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

May 8th 2014 520 replies

Survey by Thyroid Patients as to How They View Their Doctors — not a pretty picture!

Recently, Stop the Thyroid Madness LLC implemented a survey to discern thyroid patient observations and opinions about the medical professionals they have used. And the results of this poll present alarmingly negative opinions by 1,870 thyroid patients about doctors they have used.

Of course, most informed thyroid patients aren’t surprised by the findings of this survey. But to see the responses, and especially the comments made in response to questions 2 – 5, it all certainly underscores how deep the problem is.

As far as which doctors gave the worst treatment according to patients, Endocrinologists led the pack with MD’s following in second. Conversely, Naturopaths gave the best treatment, even though they barely got 1/3 of the responses.

Comments made by patients in response to Question 3 (see below–actions which would have raised the opinions of patients of doctors) were the most enlightening. They ranged from having better knowledge about T3 or desiccated thyroid, understanding the right lab work instead of the TSH, listening to their patients (stated frequently), better understanding of thyroid symptoms, ceasing to tell patients to eat differently or exercise more, not being so afraid of higher doses of NDT, understanding nutrition, stop with the labeling/dismissiveness/arrogance/patronizing, respecting educated patients…and a great deal more which you can read under #3 in the linked page below.

The survey’s five questions with responses were:

Question 1: How satisfied have you been with the way the majority of medical professionals you have seen over the years have treated your thyroid problem? (Choose one response only)

1) VERY SATISFIED — Most medical professionals have helped my thyroid issues.

2) MODERATELY SATISFIED — Some have done well; others have not done as well

3) NEUTRAL — I have no opinion one way or the other

4) NOT SATISFIED — the vast majority of my experiences with doctors have been
negative when it comes to helping me

Question 2: If you chose #1 above, why do you feel very satisfied about your thyroid treatment by the majority of medical professionals you have seen over the years? (Choose any that apply)

1) I feel much better than I did before

2) I have no more symptoms that I understand are related to hypothyroidism.

3) The majority of those doctors were good listeners

4) The majority of those doctors seem to know what they are doing.

5) The majority of those doctors respect my opinions and see me as a partner in my healthcare.

6) Their fees were affordable

7) Other (133)

Question 3: If you chose either 2, 3, or 4 in the first question above: which of the following actions by medical professionals would have raised your opinion of the thyroid care you had gotten? (Choose any that apply)

1) Paying more attention to my symptoms rather than putting focus solely on lab results.

2) Understanding how to read lab results

3) Being offered Natural Desiccated Thyroid or T3 rather than T4-only

4) Going more by the Free T3 and Free T4 plus symptoms, not the TSH

5) Understanding the reality of cortisol problems, plus saliva testing and treatment

6) Understanding the problem of low iron, reading iron labs, treatment

7) Being more open-minded about non-traditional therapies

8) Understanding that my depression could be related to my hypothyroid state.

9) Other (395)

Question 4: When thinking about the types of health care providers you have used over the years, please choose one type that you feel did the WORST job in your treatment.

1) Endocrinologists

2) MD’s (Medical Doctor)

3) DO’s (Doctor of Osteopathy

4) NP’s (Nurse Practitioners)

5) PA’s (Physicians Assistants)

6) Naturopaths

Comments (122)

Question 5: When thinking about the types of health care providers you have used over the years, please choose one type that you feel did the BEST job in your treatment.