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The Scandal: Thyroid Patients are Speaking Out, Wall Street Journal, and a new video!

STTM photos of people from video UPDATEDThe push continues, fellow thyroid patients.  And it’s getting louder and more widespread.

This week, Wall Street Journal columnist Melinda Beck, who writes a weekly health column, hit an important gong with her wonderful attention-getting article titled “Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism.”  

“Doctors and patients have been at each other’s throats for decades over how to treat a little gland in the neck–and patients may be gaining ground.” ~Melinda Beck

Beck underscored the sad reality that doctors have been relying “on a single form of treatment for hypothyroidism”, aka T4-only like Levothyroxine or Synthroid.  And it’s been travesty.

Why T4-only as a sole treatment is a scandal

As I explained in detail in the revised Stop the Thyroid Madness (STTM) book, a healthy thyroid produces five hormones: T4, T3, T2, T1 and calcitonin, with T4 being the storage hormone, and T3 being the powerhouse of all the thyroid hormones. In that healthy thyroid, T4 will convert to T3, but the gland also produces “direct” T3.  That is an important distinction.

Yet this “single form of treatment” with simply a storage hormone, which was thrust upon thyroid patients by 1960 (see Chapter 1 in the revised STTM book for excellent historical details), has forced us all to live for conversion alone…and hundreds of millions of us over the past five decades have a paid a hefty price. There are simply too many reasons why the conversion of T4 to T3 can be impaired, ranging from genetic factors, to diet, to stress, to illness, to age.

That is exactly what compelled me, in 2002, to start what is now the largest active thyroid group still on Yahoo, and later, the largest “system of thyroid groups” on Facebook, called the FTPO (For Thyroid Patients Only) groups–the only system of patient groups endorsed by Stop the Thyroid Madness.

How patients are dismissed

In addition to quoting a few doctors, Beck interviewed thyroid patient/advocate Mary Shomon, who stated “It’s so much easier to tell a woman to get up off the couch or hand her a prescription for antidepressants.” Also interviewed was thyroid patient/advocate Dana Trentini, who feels her second pregnancy ended in miscarriage due to only being dosed by the TSH, which in her case was left high–another hefty problem in the treatment of thyroid patients.

Major kudos to Antonio Bianco, president of the American Thyroid Association

When the American Thyroid Association (ATA) has been the height of disappointment for informed thyroid patients with it’s strong emphasis on “synthetic thyroxine” as well as its poor details about NDT, it was extremely refreshing to see him quoted as stating: “I credit this to patients pushing doctors and saying, ‘You don’t know what you’re talking about. I don’t feel fine’.” followed by Beck’s words that Bianco ‘has refocused the research to search for answers for such patients’. You give us a light of hope, Dr. Bianco.

Seven areas that patients beseech their practitioners to be wiser about…

1. Levothyroxine, Synthroid and all other T4-only medications

They have failed far too many of us. It’s not about exercising more, eating less, seeing a therapist or putting us on a myriad of other medications to treat conditions which are actually the results of that failure. Learn from us.

2. Natural Desiccated Thyroid (NDT)

What has been vividly changing lives is Natural Desiccated Thyroid (NDT), not T4-only medications. NDT has been around since the 1890’s–it worked then and it works now. Learn from us.

And to the contrary, NDT’s T4 to T3 ratio of 80/20 (as compared to the human ratio of 93/7) has not been a problem for the vast majority. Instead, problems are usually “revealed” on NDT due to a cortisol issue and/or low iron–both common problems that arise with patients who have been put on T4-only, or who have been left undiagnosed.

3. The TSH lab test

The TSH lab test is and has been as much a failure for thyroid patients as has T4-only. To be held hostage to a “pituitary hormone” has been a complete **nightmare** for thyroid patients. Even one of your own esteemed colleagues, Jeffrey Dach MD, as well as many others, know the travesty of the TSH as explained in chapter 4 of the practitioner-written book Stop the Thyroid Madness II.  Learn from us.

4. Lab tests that count, and how to read them

It’s the free T3 and free T4 lab tests which have been superior for either diagnosis or dosing, not the TSH. And a key observation noted by informed thyroid patients is “where” a result falls in the so-called “normal” range that has meaning. Many key lab tests have helped us in our journey towards feeling wonderful again. Learn from us. 

5. Symptoms that go along with hypothyroidism

To the contrary, there are clear symptoms that go along with the right lab tests to reveal hypothyroidism. Depression is overtly common in an undiagnosed or poorly treated hypothyroid state, as is afternoon fatigue, poor stamina, dry skin, hair loss, rising cholesterol, rising blood pressure, painful joints, and/or others. How do we know as informed patients? Because they go away when optimally treated on Natural Desiccated Thyroid. Learn from us. 

6. T3 added to T4

Adding T3 to T4 has proven to also be far superior to T4-only, and to the contrary, it has NOT been “difficult to sustain therapeutic levels” if practitioners will simply learn from their patients how to use T3-only with T4. The same goes for the even more superior Natural Desiccated Thyroid. Learn from us.

7. Listening to your patients instead of dismissing them

Finally and most importantly, though we appreciate the intense medical training that all our doctors have received, it’s time to consider that we, as informed patients, might have something valuable for our doctors or practitioners to consider and open their minds to. It’s not just about clinical trials. It’s time to RESPECT AND LISTEN TO YOUR PATIENTS, THEIR EXPERIENCES, CLINICAL PRESENTATION, AND THEIR OWN INNATE WISDOM. Learn from us. 

ANNOUNCING: A new powerful YouTube video in honor of thyroid patients worldwide: https://www.youtube.com/watch?v=2n0NfAUyOKo   Please share this video to your blogs, private Facebook pages, groups, Twitter, email. Join the PUSH!

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

 

 

– Head on over the Stop the Thyroid Madness Facebook page and Like it for daily inspiration and information!

Followup to recent Wall Street Journal article–my video

Screen Shot 2013-08-07 at 6.56.40 PMIn yesterday’s blog post, I wrote about an article that appeared on the Wall Street Journal Online website on Monday, August 5th, 2013. I gave extra information that would have made this article far more timely and important.

And the more I thought about this,  it simply bothered me to no end. Sure, we’ve heard a lot this bunk before, but it’s time for doctors to STOP THIS THYROID TREATMENT MADNESS in their clueless view of their T4-only treatment patients as well as the inane use of the TSH lab test, which is LOUSY and has harmed patients since its inception in the early 1970’s!!

VIDEO REBUTTAL TO CERTAIN INFORMATION STATED OR INTERVIEW QUOTES in recent Wall Street Journal article: http://www.youtube.com/watch?v=ugQvmJ18b8c Share this where you think it will be influential.

Wall Street Journal’s recent thyroid article: 13 ways it could have been SO MUCH better!

Screen Shot 2013-08-06 at 1.05.29 PM(This post has been updated to the present day and time! Enjoy!)

As usual, informed thyroid patients can only roll their eyes about the latest example of a watered-down, thyroid-themed article in the media. This time, it’s from Wall Street Journal Online and appeared Monday, August 5th, 2013.

Now on the positive side, the title looks good: New Call for More Thyroid Options. 

But let’s set it straight: this is NOT new! Informed thyroid patients have been clamoring about better treatment for more than a decade!!

I started the Yahoo Natural Thyroid Hormones group in 2002 as a way to begin the important discussion about the efficacy of Natural Desiccated Thyroid as a treatment for hypothyroidism over T4-only. The Stop the Thyroid Madness (STTM) site first went up in December 2005–a compilation of worldwide patient experiences which included lives being changed thanks to natural desiccated thyroid (NDT). The STTM book by the same name first appeared in 2008, and the revision in 2011. The STTM II book came out in late 2014. Today, there are numerous thyroid groups all over Facebook which have been extolling the virtues of better treatment.

Let’s break the article down and go into further detail, correction or clarification–all which might have made this a MUCH more informative and accurate article:

1) Grass roots patient-activist organizations….and the doctor-founded National Academy of Hypothyroidism, say that the current screening test for hypothyroidism leaves out some symptomatic patients and that the main medication used to treat patients, doesn’t always alleviate many symptoms.

True! And let’s be more specific about that so-called “screening test”: it’s the inane use of the TSH lab test which has been a monstrous screening failure! The TSH is a pituitary hormone, NOT a thyroid hormone! And it can consistently look “normal” for years (according to the parameter of an erroneous man-made “normal” range), yet we have raging hypothyroid symptoms…all the while the patient has to hear his or her doctor state they need to “exercise more and eat less”. The “main medication” is the all-too-often lousy T4-only medication like Synthroid, Levoxyl, Levothyroxine, Eltoxin, etc. Yet, a healthy thyroid makes FIVE hormones, not just one.

2) They are calling for doctors to be open to other therapies, including a combination of synthetic hormones and the use of natural, animal-based ones.

True. But though adding synthetic T3 to synthetic T4 is a huge step in a much better direction and can be applauded (and so can being on T3-only), a multitude of worldwide patient experience has found that Natural Desiccated Thyroid has given these patients even better results (in the presence of good iron and cortisol levels). Doctors need to listen to that!

3) Hashimoto’s Disease: A Primer (box on the left side of the article) 

What a perfect way to lower the quality of an article. As usual, it contains the dark ages information about the use of the TSH, and mentions the “common” treatment of T4-only. They might as well have inserted a primal on blood-letting.

4) [In reference to Dr. Ridha Arem’s correct comment that “There are so many unhappy thyroid patients,”] :  Many of his mainstream medical counterparts disagree. “The vast majority of people are fine on the standard therapy,” says Jeffrey Garber, an associate professor of medicine at Harvard Medical Center and chair of the American Association of Clinical Endocrinologists Thyroid Scientific Committee. Still, he says, “there’s a whole group out there who just thinks we’re clueless. 

Yup, millions of informed thyroid patients worldwide would definitely put you in that clueless category, Dr. Garber.

5) The wide range of symptoms, so similar to those of many other diseases, can make diagnosis tough. 

Totally untrue, say thyroid patients! Thyroid disease has a common cluster of symptoms in patients, which can include one or more of depression, fatigue, the need to nap, rising cholesterol, rising blood pressure, achiness, hair loss, weight gain, inability to lose weight, dry skin, dry hair, achiness, a low mid-afternoon temperature (below 98.6F/37C) and so many more symptoms.

Additionally, we have noted that if our free T3 is mid-range or lower, or our Free T4 is low, along with the above symptoms, it’s a sure sign that we are hypothyroid. Finally, family history underscores it for others, as can an ultrasound. It’s not that difficult when you understand the clinical presentation of hypothyroidism over an ink spot on a piece of paper!

6) Newborns and pregnant woman are routinely tested. Experts recommend screening all women over the age of 35 every five years. 

And how does that help when the testing/screening is with the inadequate TSH lab test, which we, as patients, already know leaves millions of us undiagnosed for years.

7) For treatment, guidelines generally call for the prescription of levothyroxine, a synthetic version of a hormone called thyroxine, or T4, which is produced by the thyroid. The gland also produces one other hormone, Triiodothyronine, or T3. 

A healthy thyroid gland produces FIVE known thyroid hormones: T4, T3, T2, T1 and calcitonin. So what’s the motive to prescribe only a storage thyroid hormone???

8) Most doctors, says Dr. Arem, generally prescribe T4-only medications. But such medications may leave some patients with lingering symptoms such as fatigue and depression and, in some cases, low T3 levels. 

He’s right! But there’s more to the story. Even those T4-only treated patients who see a removal of those lingering symptoms still end up seeing them crop up the longer they stay on T4! T4-only treatment is NOT a pretty picture.

9) Some patients go to alternative health professionals to get prescriptions for drugs such as desiccated thyroid extract (DTE) prepared from animal thyroid glands, which include a combination of T4 and T3.  

Thyroid patients are NOT just getting their natural desiccated thyroid (NDT is the common term, not DTE) from alternative health professionals. They are also getting it from open-minded and progressive regular doctors who LISTEN to their patients experiences!

10) The danger here, Dr. Arem says, is such patients could end up with an excessive amount of T3, resulting in symptoms of overactive thyroids, such as anxiety and a fast or irregular heart rate. He advocates a combination approach with amounts tailored to the individual.  

With all due respect to Dr. Arem, who is light years ahead of his colleagues in many areas, an excessive amount of T3 is not because of the use of NDT. It’s because NDT will reveal the problems of inadequate iron or inadequate cortisol–either of which can cause T3 to pool high in the blood and not make it to the cells. When patients correct those, they eventually soar on NDT. A newer page on STTM explains why NDT appears to cause problems.

11) Most studies looking at combination approaches show conflicting results. 

This is because those doing the studies made several key mistakes!! a) they dosed by the TSH, which leaves patients underdosed, b) they had no clue about the problem of inadequate levels of iron or cortisol, either which will leave a patient hypothyroid! Learn from patients!

12) The study’s authors said in a news release that it showed DTE may be a good alternative therapy for a limited number of patients. Harvard’s Dr. Garber says there may be certain subsets who are genetically programmed to respond to such combination therapies. 

That’s like saying a “limited number” of human beings and only those “who are genetically programmed” will do well with a healthy thyroid (NDT gives the exact same hormones as a healthy thyroid!! T4, T3, T2, T1 and calcitonin).

13) Dr. Garber, like many endocrinologists, uses T4 medications with the vast majority of his patients. Occasionally he’ll also use conservative doses of a synthetic T3 drug, but he virtually never prescribes the animal-derived form, he says, because of complications that could arise for women trying to get pregnant or in early pregnancy, as well as individuals with heart disease.  

And this is why most thyroid patients, when they report about their doctor experiences, find Endocrinologists to be the worst doctor they ever went to, using descriptive words such as arrogant, close-minded, blind. And by the way, even some heart surgeons know that T3 SUPPORTS healthy heart function, not hurts it! See the Medical Research page on STTM which supports what we already know by our experiences!

See the actual Wall Street Journal article here.

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* Did you know that the original and revised Stop the Thyroid Madness book is in four languages?? English, Spanish, German and Swedish. Wooo hoooo!!  And now, there’s a STTM II book with each chapter written by medical practitioners! 

* The STTM Facebook page is very active and informative about successful thyroid patient treatment! Come join us! Discussion groups listed on the Talk to Others page.