Skip to content

Oh Jolly. Guess What the Endocrine Society Has Spouted This Time?

“A great deal of intelligence can be invested in ignorance when the need for illusion is deep.”  ~Saul Bellow

STTM ignorance graphicAnd here we go again.

On April 1st, 2016 (which is April Fools Day–how appropriate), out comes an article in the Journal of Clinical Endocrinology and Metabolism which presents the latest updated position statement of the Endocrine Society, titled Compounded Bioidentical Hormones in Endocrinology Practice: An Endocrine Society Scientific Statement.

In other words, their last position statement on certain compounded medications came out in 2006, and this one trumps that one. And the implication is towards “increased regulatory oversight of all bioidentical hormones.”

Sounds innocuous enough, right? Certainly they are trying to be protective of us, right?

First, in case you don’t know much about the Endocrine Society, it’s existence began a century ago and is today the oldest “largest global membership organization representing professionals from the intriguing field of endocrinology.” Members come from 110 countries representing approximately 28,000 members, with 40 percent of them located outside the United States. They include scientists, physicians, educators, nurses and students. And you’d think that a society with such a vast array of members from 110 countries might have some innate wisdom, right?

Gulp.

The first gist of the article is first about compounded sex hormones…and here’s my summary of their position:

  1. There is no other rationale for compounding your sex hormones other than having an allergy or intolerance.
  2. Compounded hormones are risky.
  3. Compounded hormones are dangerous.
  4. Compounding Pharmacists, who are licensed professionals, are thus dangerous if their product is dangerous.
  5. Reported successful patient experiences (and their improved lab results) with compounded sex hormones has no validity; only “randomized, double-blind, placebo-controlled trials” have validity.
  6. Because there are no FDA-approved testosterone preparations for women, it should be completely avoided…so I guess the opposite logic applies?? i.e. that one should embrace FDA-approved medications like statins or the antibiotic Cipro with all their numerous side effects in all-too-many??
  7. Synthetic estrogen and synthetic progesterone is the way to go.
  8. Big Pharma products are the way to go.
  9. Give all your money back to Big Pharma

If you have a subscription to Medscape, here’s a good summary of what the Endocrine Society stated about compounded sex hormones, including DHEA, but I think my summary above says it all.

But here’s where it really gets nauseating for informed thyroid patients

Says the same Endocrine Society, as outlined in the Medscape article above (instead of my interpretation):

  • Levothyroxine (LT4) is bioidentical and a highly effective and safe therapy and is the treatment of choice for hypothyroidism. The complex tissue-specific deiodinase system converts T4 to T3 and supplies the proper amount of T3 to each of the body’s tissues according to its requirements.
  • Clinicians should evaluate patients with persistent symptoms (despite adequate LT4 therapy) for other causes of their symptoms and encourage patients to engage in healthy lifestyle measures.
  • Some of these patients may benefit from combination LT4/LT3 therapy, desiccated thyroid hormone, or compounded thyroid hormone, as long as symptoms and thyroid-stimulating hormone (TSH) (free T4) are monitored carefully.

Oh really??

To the contrary, millions of thyroid patients from the past 50+ years have noted and/or reported on the following while on T4-only:

  1. Unresolved or accumulating problems like depression, adrenal stress, anxiety, easy weight gain, difficulty losing weight, easy fatigue, poor stamina, easy sickness/slow recovery, joint pain, painful feet, hair loss, dry skin, rising cholesterol, rising blood pressure, heart problems, kidney problems, other mental health issues, and hundreds more as reported here.
  2. A poor conversion of T4 to T3 due to a myriad of real biological and normal life events which can negatively affect that deiodinase conversion of T4 to T3, such as aging, the normal stress of life circumstances, inflammation, low iron, and just plain bad genetics, to name a few. The body is not meant to live for conversion alone!
  3. Lousy outcomes from being held hostage to the dubious “normal TSH lab range” are rampant. The TSH is a pituitary hormone and can never discern if all our tissues and organs are getting enough thyroid hormone from conversion alone.

So all of you who are esteemed members of the Endocrine Society, we as informed thyroid patients who live in our own bodies and have our own intelligence and wisdom,  challenge you to consider the following questions:

  1. Can you really call T4-only “effective and safe” in light of the myriad of continued hypothyroid symptoms that patients have noted or reported for 50+ years while on Synthroid, levothyroxine, Tirosent or any other brand of T4-only…sooner or later?
  2. In light of the fact that T4-only results in numerous organic and tissue problems like depression, a low metabolism, joint pain, high blood pressure, rising cholesterol and so much more…does it really meet the body tissues requirements?
  3. If T4-only meets all the body’s tissue requirements, why does nature cause a healthy thyroid to give not just T4, but also direct T3 and calcitonin?
  4. If all those continued and persistent hypothyroid symptoms on Levothyroxine are due to “other causes” or “unhealthy lifestyle choices”, why in the world do these same individuals see them all go away when they get on Natural Desiccated Thyroid and find their optimal dose (which has nothing to do with the TSH)??
  5. Why is it that when patients are held hostage to the dubious TSH range, they continue to have clear and/or rising hypothyroid symptoms?

JanieSignature SEIZE THE WISDOM

– Have you Liked the Stop the Thyroid Madness Facebook page? It gives you daily inspiration and informative information based on years of thyroid patient experiences and wisdom as record on the Mothership of Thyroid Patient Experiences: STTM!

– You can comment to the Endocrine Society as to their views right on their own Facebook page: https://www.facebook.com/EndocrineSociety/

Check out this video by Hugh Melnick MD about the superiority of NDT over synthetic T4: https://www.youtube.com/watch?v=muorjvQ4DUE

– Share this blog post below. Let’s spread the word about this!

If you could turn back the clock, would you have started on NDT instead of T4-only??

CLOCK turning back.bmp“If you could turn the clock back to when you were first diagnosed, would you even have bothered trying the synthetic Thyroxine (T4-only) or would you have jumped right in with NDT (Natural Desiccated Thyroid)?”

The above is an interesting real question asked by a new thyroid patient recently to other thyroid patients in a forum.

She is in the dilemma that so many NEW hypothyroid patients find themselves in when their doctors are pushing T4-only, yet patient experiences as outlined on STTM are saying that NDT was a better treatment for all too many. WHO TO BELIEVE?? Sure, some state they do well on T4-only, but is there more to the story?  Here are the answers from many different individuals in that string, plus more:

  • I would definitely go directly to NDT. NO doubt about it!!!
  • I never would have taken synthetics if I had known then what I know now. I have spent the last 15 years or so (maybe longer including the undiagnosed time) not in optimal health.
  • I agree 100% with the above two comments!
  • I would never have started on synthetic. Straight to ndt!
  • I was diagnosed 6 months ago. I switched after 2.5. I never felt any improvement on levo. If anything felt worse
  • I have been on over 9 different meds for the last 5 yrs. I found the STTM site, switched to NDT and I will never go back to all those drugs/meds! Life is actually returning to my body! The dr’s can keep you sick! Just my own personal experience!
  • I agree with the above. Had I known I would have never of taken Syncrap (Synthroid). Now I’m trying to fix the damage that has been done.
  • I have only ever been on synthetic (nine years), first Levoxyl and most recently Tirosint. If I had to do over, I would have tried NDT first no doubt.
  • On Eltroxin, heart issues were chest pains, numbness on my left arm, tachycardia, inverted t waves on the ECG which led them to believe i had a heart attack. I had a crazy fever and was doing reverse t3 clearout when that happened, but had it not been for synthetic, i believe i would not have gotten that bad. After taking synthetic for just a few months i also became thyrotoxic with large amounts of t4 pooling in my blood which ultimately meant to me i had conversion issues.
  • I’ve been on synthetic for 15 plus years. At the time I was desperate and even though I’ve done mostly natural on a lot of other fronts… I wasn’t aware there was an alternative. It seemed like a lifesaver at the time, as I was desperate. Now, with all the additional issues, which may likely be connected, I’d go with the natural for sure.
  • I took Synthroid, Levothyroxine and Cytomel… none of these synthetics helped me. I think my fibromyalgia diagnosis 15 years ago was due to an undertreated thyroid on Synthroid. I lost a LOT of hair as well! Armour’s resolved my hair loss within a week. It’ll take a while to grow back, but at least I’m not losing handfuls anymore!
  • I would have gone for Natural…I was HORRID on Synthroid
  • A year ago I got so sick I could barely walk to the bathroom. I couldn’t breath, shower, walk, and literally felt like I was dying. MY levothyroxine was raised from 225 to 275 which bought my TSH from 15 down to 2.5 which my NP thought was “great” – all the while I’m telling her I feel like I’m dying.  I will never ever go back to SYNTHETIC (T4-only)!!  Only wish I had even known there was NDT 25 years ago. I JUST heard of NDT 6 months ago through a Yahoo Group and then thank GOD I found STTM.  
  • If you have a choice ndt is a great option.
  • I would too have gone straight on NDT. I spent 2 yrs fighting with my levels (going from hypo to hyper) while taking Synthroid and Cytomel. Not one of the 5 doctors I saw could ever get me regulated. Within 3 or 4 months after I started self-treating (because I was living overseas where they don’t even have NDT) I was optimized…lost almost 40 lbs and felt wonderful.
  • I would have absolutely gone with NDT first…
  • If I had stayed on Synthroid for 6 months, I would not be here now because I would have committed suicide. I was thinking about it at 2 months. Thank God I discovered NDT (Natural Dessicated Thyroid) hormone then and switched.
  • I was on Synthroid for a good 20 years and would have said I was doing great, energy-wise. But I never realized that my rising cholesterol, need to nap and antidepressant was due to Syncrap being inadequate. I wouldn’t do it again, in spite of having better energy than others. 
  • I would not have tried synthetic thyroid first. NDT closely resembles the human thyroid hormones. NDT has T1 and T2 (which they are not even sure what the purpose of these thyroid hormones are yet), T3, T4, and Calcitonin. Calcitonin is important for bone strength. People who have taken synthetic, T4-only thyroid have eventually developed osteoporosis. Our bodies need all the ingredients in natural thyroid.
  • That’s easy. I would have started on desiccated. Why take the risk when T4 has caused so many problems for so many?
  • Yes. I am one who was started on both T4 and T3. I thought it was the right thing. When I switched to Np Thyroid, it was hugely better. It’s true what peeps say about it better even better. I do have good iron and cortisol.
  • Yes, yes, yes.

Another gal mentioned she would have gone to to the high iodine protocol first (on the premise that her hypothyroidism coud have been from low iodine).

Another said she didn’t do well on NDT, but she and any others in her shoes can discover why here i.e. it’s not about NDT–it’s about two common issues that NDT will reveal, and if treated correctly, one can soar on NDT!

Another felt it was a tough call due to some doing well on T4-only…but you have to consider that many aren’t as well as they claim (and are taking meds to bandaid the symptoms of a poor treatment), or they will and do see more problems crop up the longer they are on, in spite of doing well now.

Yes, if I could turn back the clock, I would have had better life experiences.

Multiple sclerosis, Dysautonomia, you name it…ALL made worse from hypothyroidism or being on a T4 med

Screen Shot 2015-08-04 at 2.30.58 PM(This post has been updated to the current day and time. Enjoy!)

Before my thyroid disease of hypothyroidism was discovered, I had horrific and debilitating consequences from exercise or any activity.  You can read about it in even more detail in the Introduction of the patient-to-patient Stop the Thyroid Madness book.

When my so-called “borderline hypothyroid” was discovered by age 30, I thought whoo-hooo, I’ll finally get rid of this strange nightmare whenever I tried to do ANYTHING.  I was put on Synthroid and my anticipation for a better life was profound.

But my hope was dashed.

Not only did my body continue to overreact to activity, it got much worse over time.  Horribly worse. I got to where I couldn’t even grocery shop without paying horrible prices in fatigue and other miserable symptoms.

Nearly twenty years after I had started on a T4-only medication, and had even raised it. I was told by one doctor after another that my problem was not my thyroid. I was forced to start the process of applying for social security disability–a low, low time for me.

But they were all dead wrong.

Sure, turns out I have a form of Dysautonomia, a malfunction and overreaction of my autonomic nervous system, causing my body to far overreact to activity or stress. But remaining hypothyroid, as so many of us do on t4-only medications, had made it far, far worse. And I proved it. When I switched to natural desiccated thyroid in 2002 and raised it according to what patients have learned, a miracle occurred.  My severe autonomic reactions made an almost complete turnaround.

And my experience of change or improvement when it comes to other diseases or conditions has been shared by others.

Last week, I received an email from a man whose brother has MS–Multiple Sclerosis.  And though natural desiccated thyroid has not taken his MS away, it allowed him to move from this wheelchair to a walker! That is quite impressive.

So I am left wondering:  what other conditions or diseases, which are unique in themselves, are worsened being either undiagnosed or dosed the lousy TSH lab test range…or due to the inadequate treatment of Synthroid, Levoxyl, levothyroxine, Eltroxin, Tirosent and all other T4-only medications for all to many like myself? It’s awful to think about it.

JanieSignature SEIZE THE WISDOM

* Learn about the problems with T4-only right here. 

* Join the STTM Facebook page for daily tips, information, and humor!

* Get the STTM books here, because you have to become informed in order to get well: www.laughinggrapepublishing.com