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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!

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The Good, the Bad and the Ugly: 2012 in perspective for thyroid patients worldwide

2012 represented my tenth year as an activist, which has given me great perspective of where we are today as to compared to where we were ten years ago. And it’s huge. We had NO Stop the Thyroid Madness compilation of successful patient experiences to learn from and very few patient groups. We’ve come a long way, baby and the fight for better thyroid treatment and wisdom continues!

To summarize, Clint Eastwood couldn’t have said it better as to the mix of what 2012 gave us as informed thyroid patients!

THE GOOD: 

  • Armour returns to a softer tablet  After Forest Labs disastrous reformulation of Armour natural desiccated thyroid in 2009, which made the tablets harder and caused a return of our hypothyroid symptoms, we started to see Armour tablets becoming softer again in mid-2012. And that meant we could choose to do Armour sublingually once again. In the meantime, this disaster allowed many patients to discover NP Thyroid by Acella, which has turned out to be a great product.
  • More doctors are getting it! I probably see this in a more widespread way than individual patients do thanks to all the emails I get, but it’s clear that a growing body of doctors are finally understanding the efficacy of natural desiccated thyroid and the idiocy of the TSH lab test in diagnosing and dosing NDT. Sure, the field of Endocrinology is still as backwards as it gets, as are many other doctors, but others are listening here or there. (But do note that even the best doctors aren’t caught up in other areas, so become informed and expect to guide them as to patient experience! STTM book helps you do that.)
  • STTM book now in German and Swedish  I was proud and excited to offer these two translations to help spread the word to those who may not speak English.
  • Study being done comparing NDT with Synthroid Walter Reed National Military Medical Center in Bethesda, Maryland is doing a study, and seeking participants from the military, to compare the results of natural desiccated thyroid (which they call Natural Desiccated Extract or NDE, and will be Armour) and T4-only aka levothyroxine (and will be the infamous Synthroid). But there is a clear bad…..see below 
  • Wichita, Kansas says no to Fluoride in their water. Considering that many of us suspect that the fluoride we are constantly exposed to could explain the huge influx of thyroid disease, this is extremely good news and we can only hope that other cities get this smart.
  • Thyroid Change In an attempt to unite all thyroid websites, leaders and focuses came this new website, Thyroid Change.

THE BAD:

  •  John C. Lowe dies  It was a terrible shock to lose this helpful medical professional in January due to the effects of a head injury the previous year. And his websites went with him for awhile due to probate. He will be sorely missed, as he was a champion for the use of NDT and understood SO much about better thyroid care.
  • The passing of Edna Kyrie  Edna of the UK worked hard on the website Thyroid History, aka Thyroid Research, compiling everything she could find pertaining to thyroid research and science, even while dealing with the effects of MS (multiple sclerosis).
  • US now confiscates medications if they come into the country  In July, Obama passed a bill called the FDA Safety and Innovation Act (S. 3187) which allows the government to destroy a package of personally imported drugs at their point of entry to the United States…even if some patients feel they need them when they can’t find any doctor wise enough to prescribe NDT, or enough NDT thanks to the poor use of the TSH lab test. And several patients have already had this happen to them.
  • Walter Reed National Military Medical Center study will sadly be using the TSH  i.e. though it looks exciting to see a study comparing NDT to Synthroid, they are going “to keep TSH in normal range” (which for the majority can mean they are still hypothyroid) and aren’t even testing the FREE T3, just using the total T3, total T4, free T4, T3 resin uptake, sex hormone binding globulin (SHBG), and a lipid panel.  Give me a break….
THE UGLY:

Good thyroid patient discussion groups here.

Things we have learned here.

What’s new on STTM here.

What your Road to Recovery can look like here.

The revised STTM book here.

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An Endocrinologist peeks through, RAI disaster, and why synthetic T4 is only a mirror image

The clueless Cuckoo’s Nest of Endocrinology just goes on and on, according to repeated negative comments by thyroid patients in groups after they have visited with an Endocrinologist.  i.e. you will be put on T4-only and dosed by the TSH, then told you are just fine and only need an antidepressant or statin or BP med.

But in a recent issue of the Clinical Thyroidology For Patients (A Publication of the American Thyroid Association), Volume 5, Issue, 5, 2012, there comes the question: Should patients with no functional thyroid gland be treated with both thyroxine (T4) and triiodothyronine (T3)? 

Of course, the question is like asking “Should those starving be given food? ”  The article starts out stupid, stating (in bold):

  1. “…the absence of T3 production by the thyroid can be overcome by maintaining higher circulating T4 levels, resulting in normal circulating levels of T3. This is why T4 in the form of levothyroxine is the main treatment for hypothyroid patients”.  Patients all too well know how ludicrous this is.
  2. “Recent studies have generally found that there is no clinical advantage in adding T3 to the usual T4 replacement regimen.”  What about this study which reveals that there can be inadequacy of peripheral deiodination of T4 to T3 in some, or this study which found no support for the hypothesis that people with symptoms of hypothyroidism but thyroid function tests within the reference range benefit from treatment with 100 µg thyroxine daily, or this study which found that triiodothyronine added to thyroxine improved mood and neuropsychological function, and more.

But then comes the little peek from the door by the MD author after mentioning the 2011 study titled “Levothyroxine monotherapy cannot guarantee euthyroidism in all athyreotic patients.”  The concluding paragraph has this in it:

The present study identifies a subgroup of hypothyroid patients, namely those whose thyroid was surgically removed who do not have normal FT4 and F3  levels despite normal TSH levels on T4 alone. What is not shown by this study is whether or not combination therapy (T4 plus T3) is beneficial in these patients. Further studies are needed to sort this out.

Further studies are needed?? They are already out there! Besides, if 99% of Endocrinologists would use the proverbial toothpick to open up the eyelids of their minds, they just might notice all the continuing hypothyroid symptoms their patients have while on T4-only meds whether STUDIES prove anything or not. WAKE UP!!

MAN-MADE SYNTHETICS ARE ONLY A MIRROR IMAGE OF THE REAL THING

Scientists have always been able to synthetically duplicate substances by creating the same mix of molecules, aka a synthetic copy of the original compound. That’s what levothyroxine (l-Thyroxine) is a man-made copy of T4 (Thyroxine). Synthroid is an example. But it’s a mix of the left handed nature-made combination of molecules, aka L-(Laevorotary), along with the synthetic, man-made right handed version, aka D-(Dextrorotary), i.e. the latter is a mirror-image, not a direct image, according to this article.

The author feels it doesn’t act like a hormone.  So though your blood will show you have an increased level of levothyroxine, it’s not the same as having an increased level of the natural t4.  And of course, we as thyroid patients also know that the body is NOT meant to live on a storage hormone alone, even if it was pure. We also need direct T3 added to that T4. Even  natural desiccated thyroid provides direct T3. So with natural desiccated thyroid, we get T4, T3, T2, T1 and calcitonin.

REFLECTION ON WHY RAI WAS THE WORST THING SHE EVER DID

Read thyroid patient Robyn Thompson’s story on why she so regrets doing RAI (Radioactive Iodine), and how her Graves TSI antibodies are now worse than ever before, here:  //www.stopthethyroidmadness.com/robyns-experience-with-rai-graves/

HOW TO PROTECT YOUR ADRENALS IN THE FACE OF STRESS

I loved what thyroid patient Joy McHargue said to someone on the STTM Facebook group when asked what to do about high stress. Her answer:  Pray, salt, magnesium, rest, adaptogens of your choice, Vitamin C, talk about the stress to a calming person, take time away from the stress doing something fun regularly, epsom salt baths, fresh air?

THE STOP THE THYROID MADNESS BOOK IS NOW EVEN MORE REVISED! 

I added info about the T3 Circadian Method for Adrenal fatigue, refined information throughout, and cleaned up misspellings.  You can order the book at the bottom of any page on STTM, or via the tiny photo.

JANIE’S LATEST INTERVIEW: http://podroom.a2zen.fm/podcasts/krystalya-marie-energy-healing/stop-the-thyroid-madness-with-janie-bowthorpe-on-e

P.S. If you are receiving this via the Email Notification, DO NOT reply to the email to comment on this post. Click on the title of this, which will take you to the actual blog post, and Comment there!

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Get ready to be blown away by the words of this doctor! He criticizes his OWN colleagues, and rightly so!

As mentioned in my previous blog post of November 10th, I frequently get emails from doctors all over the world who appreciate the message of patient experience as expressed on Stop the Thyroid Madness, both the revised book and website.  Here is just one more that absolutely blew my mind, as this MD, unlike his ostrich colleagues, keeps his head out of the sand and tells it LIKE IT IS.  Again, I will not be mentioning his name.  The below is exactly as he wrote it to me. Get ready to be both awed and disgusted!

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In the year 1847, a young Hungarian physician named Ignaz Philipp Semmelweis had a practice of Obstetrics which began to grow by leaps and bounds.  Even the Royalty of Hungary began to go to his practice. Why?  Because he had the best outcomes.

When he tried to show his collegues his techniques, they simply made fun of him. As his practice continued to flourish,  his peers brought him before the medical society and censured him for not adhering to the current practice guidelines. 

His crime? Washing his hands before delivering babies.  Physicians were offended to think they should wash their hands, and were especially incensed when he could offer no scientific explanation for his intuitive action.  Yet, this very simple antiseptic procedure meant that his OB patients did not contact puerpeal fever and die. Puerperal fever was common in mid-1800’s and often fatal.

The censureship did him in with depression and his practice ended when he was only 47 years old….not because he couldn’t practice,  but because he literally grieved himself to death watching so many women dying unnecessarily for the sake of  current practice guidelines.

It was not until the 1890’s that his methods were fully recognized,  even though Oliver Wendell Holmes of Boston, Mass. USA had confirmed the contagiousness of peurperal fever, and Louis Pasteur confirmed the theory about germs.

And today, established scientific and medical opinions continue the same ridiculous travesty. 

TSH levels have been set at 0.3-5.1 as normal. Therefore, if your physician screens for thyroid disease and you fall within that range, you are considered normal.  Yet, Gay, JC et. al.,  in the Arch Intern Med 2000: 160: 526-534,  showed that the TSH range was 0.45-2.5 for 95% of general population.

In the J Clin Endrocrino Metab Feb 2002 87:(2)489-499 “Serum TSH,T4, and Thyroid Antibodies”,  Hollowee JG et.al. found that a normal TSH was 0.05-3.0 and was different for Whites, Hispanics, and Blacks.The NHASANES lll study showed the normal TSH to be 0.3-2.5 (95% of normal reference subjects).

As a doctor, I wrote to my pathologist at the lab I use and asked why his lab had not changed the ‘normal’ values. I will give you his reply:

“I am aware of this idea to lower the reference range for TSH.  But there are mixed feelings about this in the medical community, especially with endocrinologists. If, for example,we lowered our reference range for TSH from its current 5.1 to 3.0,  we would go reporting about 7% of TSH results being too high to 30%. The last time I looked into this, which was about two years ago (note: this was written in June 24, 2005,  which puts the date of last looking in 2003), most endocrinologists that I spoke with were concerned that suddenly having many more patients would be considered “abnormal” and it would be difficult to manage. They felt it would be best to wait until the word spread in the general medical commmunity and literature so that most physicians would be prepared for the inevitable questions from patients and know how to deal with patients suddenly having high TSH’s. On an individual basis, we certainly could give a lower reference range for the TSH, but you should know that this is not the standard practice in the commnity at this time. It may become standard, but right now, it is not.

Thanks, and good luck,
xxx

So there is the problem. Even if TSH alone was used for screening,  the answer will be wrong. Many hypothyroid patients misdiagnosed as ‘normal’  are being done so because if the right change were made, the ‘medical establishment’ would be embarassed. This says to me that the ‘medical establishment’ does not care about the patient as much as they do themselves.

Recap: TSH levels were known to be wrong by 2000. Reconfirmed in 2006. Waited at least 5 years to make change and no change made. Something is wrong with the system. Review Ignaz Philipp Semmelweis story. Nothing has changed in approx. 160 years.

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From Janie:  ABSOLUTELY BRILLIANT!  And of course, informed thyroid patients also know another inane current practice guideline–the use of  Synthroid and other T4-only meds as the “gold standard” of thyroid treatment…in spite of the fact that a huge body of thyroid patients in internet groups ALL OVER THE WORLD report POOR outcomes when on T4-only meds, besides with the TSH, and do much better on natural desiccated thyroid, or even T3, and dosing by symptoms and the free T3.

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FIND THE ABOVE APPALLING??? FIGHT BACK!!!  A publicist has been hired to represent  Stop the Thyroid Madness in getting to the word out to millions who still linger on T4-only meds, or who are considered “normal” thanks to the lousy TSH lab test. But it can’t go on long without your help!! Read about it here.

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“Are Endocrinologists just DETERMINED to be stupid?” ask some thyroid patients.

(Though this was originally written in 2011, it has been updated to the present day and time. Enjoy!)

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Will it ever end?

A very troubling article

On March 21st, 2011, from the Endocrine Today website, comes the article Hypothyroidism only partially responsible for decreased quality of life in Hashimoto’s thyroiditis. And this article has so many troubling comments and wording that it has made some thyroid patients question whether their Endocrinologist can really help then.

For example, the article notes that there seems to be a “higher symptom load and the lower quality-of-life scores in the group of patients with increased anti-TPO levels”, which can include “Chronic fatigue, dry hair, dysphagia, irritability and nervousness”.

Yet, the article states, these patients have

    • “normal thyroid function”
    • are “euthyroid”
    • have an “ideal biochemical response to thyroid hormone replacement therapy.”.

Are you kidding me, say many thyroid patients???  Euthyroid technically means “the state of having normal thyroid gland function.” Yet, chronic fatigue, dry hair, dysphagia (difficulty swallowing), irritability and nervousness are far from normal, besides being classic hypothyroid or Hashimotos symptoms, as well as having potential adrenal issues from having poorly treated hypothyroidism!

And of course, most informed thyroid patients know that ” euthyroid” and “normal” and “ideal” in the mind of poorly-trained doctors refer to an ink spot on a piece of paper called the TSH lab result and NOT cellular receipt and/or use of thyroid hormones. The TSH is a pituitary hormone, not a thyroid hormone. The TSH lab test has failed patients for decades, just as has T4-only like Synthroid, levothyroxine, Eltroxine, etc!

Also mentioned is a particular Austrian study involving 426 women aged 19 years or older who were undergoing surgery for benign thyroid disease. When patients come on thyroid groups and report Endocrinologists who want to remove their thyroids simply because they have the treatable Hashimotos disease, you have to wonder why 426 women were having surgery for “benign thyroid disease”…

But in spite of all the above, there is hope!

Hashimoto’s patients have become wise and informed. To read all the ways patients have learned to adequately treat Hashimotos, go here.

To find out if you now have an adrenal problem, go here. This is important to know because it can be problematic in raising NDT if you have low cortisol, or high cortisol. Thus, the need to treat it first.

To find a good doctor to work with, and/or teach while you are working with, go here.

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Do you look back and wonder about the fact that your thyroid was taken out?  Let us hear your story by commenting on this post. What has been your experience with an Endocrinologist? Tell us about it.

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** Have you Liked the STTM Facebook page? It provides daily information and inspiration just for thyroid patients!

** Check out recommended patients groups on the internet.

** Stop the Thyroid Madness is available in TWO different books! //www.stopthethyroidmadness.com/comparing-the-sttm-books/

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