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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!

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Ladies: Hypothyroidism in pregnancy can be dangerous, says this woman who suffered a miscarriage

This Guest STTM blog post was written by hypothyroid mom Dana, who strongly feels that her miscarriage was due to her treatment with T4-only medications. She now has two healthy sons of which the second one came into the world after she switched to natural desiccated thyroid. 

On a cold snowy day in New York City in early 2009, I lay on a medical exam table on what would be one of the worst days of my life. I had miscarried at 12 weeks and was preparing for a D&C. A technician had just taken an ultrasound and walked out of the room to confirm to the medical staff that my fetus had no heartbeat. I sprang off my bed and ran to the image on the screen. I felt my body shake and my fists clench as I stared at the image of my unborn child. What happened to my child?

I was diagnosed with hypothyroidism following the birth of my first son in 2006. I trusted my doctors and followed their synthetic thyroid drug protocol to the letter …never once thinking they might not know everything there was to know about hypothyroidism. I trusted them as the experts especially when I became pregnant that second time.

In my first trimester, I was overcome by a sick, tired, weak feeling. I recall the night I told my husband, “I am worried that something is wrong with the baby.” My body was whispering a warning to me, but I trusted my doctors and didn’t question them when they responded that my thyroid levels were safe for pregnancy and that it was normal in early pregnancy to be tired. Somehow this “sick, tired, weak” feeling didn’t seem normal but I disregarded my body’s warning.

I would later learn that my Ivy League medical school trained and top awarded NYC doctors did not know enough about hypothyroidism especially as it related to pregnancy. Under their care my TSH soared far above the safe range for pregnancy and endangered my baby’s life. I miscarried at 12 weeks pregnancy.

A study presented June 2012 at The Endocrine Society’s 94th Annual Meeting in Houston recommended that all pregnant women should undergo thyroid screening in the first trimester of pregnancy. The study was conducted on 1,000 pregnant women in their first trimester in Ludhiana in Punjab, India. According to the study’s lead author Jubbin Jagan Jacob, M.D.:

“The study found that even mild thyroid dysfunction could greatly increase the risk of serious problems. Women with mild thyroid dysfunction had double the risk of miscarriage, premature labor or low birth weight as compared to pregnant women with normal thyroid function. They also had seven times greater risk of still birth.”

In the Journal of Medical Screening, researchers in a large study of 9,400 pregnant women demonstrated that pregnant women with hypothyroidism had a second trimester miscarriage risk four times the risk of women who were not hypothyroid.

According to a 2008 study in the Indian Journal of Medical Sciences, hypothyroidism has a statistically significant relationship with recurrent pregnancy loss in the first trimester. According to researchers:

“Thyroid hormones are essential for the growth and metabolism of the growing fetus. Early in pregnancy the mother supplies her fetus with thyroid hormones. If the mother is hypothyroid, she cannot supply her fetus with enough thyroid hormones. Hence hypothyroidism is a risk factor for pregnancy loss.”

So why had I trusted my doctors unquestioningly?

My doctors tried to assure me there was no link between hypothyroidism and miscarriage, but my instincts told me they were wrong.

As the medical staff prepared me for my D&C that fateful day, the warrior mom came out of me. Don’t mess with my babies! I vowed that I would do everything in my power to research everything there was to know about this disease and warn women everywhere about the dangers. I would never trust my doctors unquestioningly ever again.

After 3 years of intense research and a quest to find the top thyroid health professionals, I am now in the best health ever. I changed to a great thyroid doctor who listened to my symptoms and discovered abnormally low free T3 levels despite my synthetic drug treatment. Thanks to a switch to the natural desiccated thyroid Nature-throid I am feeling great. I got pregnant naturally with my second son and gave birth to him in 2010. Dreams do come true for moms with hypothyroidism.

By Dana Trentini, creator of Hypothyroid Mom (http://hypothyroidmom.com).

You can read more about hypothyroidism and pregnancy in research here:

1.  Endocrine Society (2012, June 23). Mild thyroid dysfunction in early pregnancy linked to serious complication. Newswise. Retrieved July 3, 2012 from http://www.newswise.com/articles/mild-thyroid-dysfunction-in-early-pregnancy-linked-to-serious-complications

2. Allan, W.C., J.E. Haddow, G.E. Palomaki, J.R. Williams, M.L. Mitchell, R.J. Hermos, J.D. Faix, R.Z. Klein. Maternal thyroid deficiency and pregnancy complications: implications for population screening. J Med Screen 2000; 7:127-130. Retrieved from http://171.66.127.126/content/7/3/127.full.pdf

3. Rao VR, Lakshmi A, Sadhnani MD. Prevalence of hypothyroidism in recurrent pregnancy loss in first trimester. Indian J Med Sci 2008;62:357-61. Retrieved from http://www.indianjmedsci.org/text.asp?2008/62/9/357/43122

HO! HO! HO! Did you know the Stop the Thyroid Madness book is now also in German and Swedish? You can order your copy as a Christmas present for your loved one or friend here. 

Read about Pregnancy and Thyroid disease here.

 

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One more kooky & hilarious video! Plus more about bipolar, pregnancy, mistakes patients make.

HUMOROUS VIDEO ABOUT ADRENAL FATIGUE:   In my blog post last February 15th, 2011, I sent you in the direction of a kooky, creative and hilarious You Tube video titled “Our Holy Miracle of the Infallible TSH Test”.

Well, creator and thyroid patient Brian Foreman has brilliantly done it again, but this time, it’s about adrenal fatigue and titled “Why Isn’t My Thyroid Medication Working?”  Have fun watching it, and get ready for a good laugh here and there.

Want to know more about adrenal dysfunction? Go here to find out about the problem, and do the Discovery Tests tests to see if you might have it.  Note that it’s critical, if the self-tests seem to point to an adrenal issue, to do a 24-hour adrenal saliva test to see what is going on at four key times during a 24-hour period.  Here is a compilation of what patients have learned in how to treat low cortisol, and this page is important to share with your doctor. If you want even more detail, it is strongly recommended by thyroid patients to order the REVISED STTM BOOK, and see Chapters 5 and 6. This can be carried right into your doctor appointment with key areas highlighted and bookmarked.

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BIPOLAR, DEPRESSION and HYPOTHYROID: A thyroid patient emailed me with just one more article on the connection between having a bipolar disorder and one’s thyroid, including the fact that there is “a strikingly high rate of autoimmune-caused thyroid problems in people with bipolar disorder”, aka Hashimotos disease.

And even if depression is your main problem, the article mentions “gently pushing your thyroid status over toward the “hyperthyroid” end of normal, if you happen now to be toward the hypothyroid end of normal”, in order to adequately reverse the depression problem. I constantly think back about my own mother who suffered from depression, succumbed to having shock therapy, and ended up on anti-depressants the rest of her life because of her use of Synthroid.  So we know that treating hypothyroidism with direct T3, such as is found in desiccated thyroid, is far better. 

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IS THERE A BABY KNOCKING IN YOUR BELLY?  I often see pregnant women in forums wondering how their babies are doing and how the thyroid works in helping their babies, or hurting them if the mother is pregnant and hypothyroid.  Here is an article sent to me that can help inform as to changes in your thyroid function when pregnant, how thyroid hormones affect the brain of the fetus, and the role of iodine.  It can underscore how important proper treatment is while pregnant.

What about adrenal fatigue which so many thyroid patients find themselves with, and pregnancy? A gal named Anne has written about this issue here. She has Addisons disease, which is more about a disease process and can be autoimmune, but her comments can be very applicable for those of you with sluggish adrenal function. Share all of this with your doctor. Need to find a good one?? Go here.

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TWO COMMON MISTAKES  MADE BY PATIENTS:  In patient groups, here are two common mistakes I see patients make:

  1. Not doing the 24 hour adrenal saliva test if adrenal dysfunction is suspected:  I can’t stress this enough:  patients have learned repeatedly they shouldn’t have rushed into cortisol treatment if they or their doctor’s “suspect” an adrenal problem. Yes, STTM has outlined several self-tests, called Discovery Steps, that you can do in your own home to see if anything is suspicious. There is also a checklist of symptoms related to adrenal problems. But the problem is two-fold:  symptoms of high and low cortisol can be exactly the same, and ‘where you are low’ and ‘where you are not’ can dictate how your treatment should be.  Some only need to lower high cortisol, some may do well on simply adaptogens like Ashwagandha or Rhodiola, some do well on Isocort or OTC adrenal cortex, and some outright need to be on prescription hydrocortisone. Teach this to your doctor. Here is where you can order your own saliva tests, and then take them into your doctor’s office.
  2. Not getting copies of labwork: Contrary to how your doctor says it, you have a right to have copies of your own labwork. And you should! Patients often come on groups seeking feedback from other patients, and yet, have no idea what their labwork was, or the ranges. Getting copies of labwork is just one step of many in being a pro-active patient. Here is how to read labwork according to the experience of thyroid patients.
Remember: Stop the Thyroid Madness, aka STTM,  is a patient-to-patient informational site meant to educate and inspire you with that information. Talk to your doctor about what you have learned; use the STTM revised book right in the office, and push for what you believe in, and you can go a long way to feeling MUCH better.
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Australia is adding iodine to their bread

kangarooOn the heels of an excellent Thyroid Patient STTM Community Call on iodine with guest Stephanie Buist (see below), it was just announced by the Food Standards Authority of Australia and New Zealand (FSANZ) that Australia will add the micronutrient iodine to bread. New Zealand already started that practice in September of last year.

The announcement mentions the importance of iodine to thyroid functioning, as well as for infant brain and nervous system, both during and after pregnancy.  For the latter, it states “Not having enough iodine during pregnancy and early childhood can cause developmental delay and lead to reductions in mental performance. This damage prior to 2-3 years of age is irreversible.”

Apparently, the  soils of Australia and New Zealand are not too prolific in iodine, and patient levels have been revealing that fact for decades. But Stephanie Buist, the friendly and knowledgeable owner of the yahoo group Iodine, as well as a thyroid cancer survivor, states that even most US soils are becoming depleted.  It’s not just a problem of the northern US “goiter belt”, Europe or Africa anymore.

The importance of iodine goes even farther than thyroid functioning, pregnancy and infant brain development. It has a key role in breast health, your immune system, bones, estrogen metabolism, lung health, eyes, and cancer prevention. The iodine4health website lists many benefits as well as areas not understood yet.

How much do we need? Experts like Abraham, Flechas and Brownstein will emphatically state that we probably need more than is recommended.  At least 50 mg of iodine may be necessary for awhile to bring your levels back up to healthy amounts, besides stop the the side effects of iodine on hashimotos disease.  i.e. thinking you are getting enough iodine naturally from foods, or even from natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or compounded, may not be so.

How do you find out if you are iodine deficient? Stephanie stated on the Community Call that the majority of folks probably are deficient. But if you want to be sure, you can do the Iodine Loading Test.

What are good iodine supplements? Lugols is an liquid variety, and my husband and I personally use it in our morning juice or Emergen C (my husband uses Emergen C in water since he’s diabetic, and it’s a good way for him to get his Vitamin C).   In pill form is Iodoral, developed by Abraham.  You can google either and find some website sources. Also good to take with iodine supplementation is magnesium, Vitamin C, and selenium, which helps with the detox effects.

You can listen to the recording of Stephanie’s and my conversion on iodine by going to the link below for Episode 5 of the Thyroid Patient STTM Community Call. (Yes, I will correct the skipping you hear in my voice next time.)

Read Diana’s experience with iodine helping her get off desiccated thyroid. Not something we can all do, but it happened to her!

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A un-brilliant double whammy by the FDA concerning a weight loss medication

alliThere’s an over-the-counter weight loss drug called Alli made by the huge pharmaceutical GlaxoSmithKline. You can see it on the shelves of most any Wal Mart or local drug store.  It’s also called Orlistat which is marketed under the trade name of Xenical by the pharmaceutical Roche.

It’s promoted as safe, and it works by limiting the absorption of fats from what you eat, which in turn reduces your intake of calories.  (What has always turned me off about Alli or Orlistat is that is creates oily and loose stools. Bleck. )

Medscape just today reported about an FDA warning: the Use of orlistat may decrease L–thyroxine (T4) absorption and lead to hypothyroidism. Clinicians are advised to administer levothyroxine and orlistat at least 4 hours apart…

Oh jolly. So now we have the FDA giving a warning about Alli causing problems with “thyroxine” use,  yet it’s the VERY “thyroxine” use that causes a certain large percentage of those using Alli to need to use it in the first place. You can see that reality in the questions about the hypo problem on the Alli forum.  i.e They are all on thyroxine!

Hitting my head against the wall.

P.S. Reported in Endocrine Today and from just a month ago, and article titled Hypothyroid patients required increased levothyroxine during pregnancy.  Zombie Endocrinologists. Zombies. That’s like having an article titled Sick patients need more blood-letting. i.e LEVOTHYROXINE SUCKS AND SHOULD BE IN THE PAST just as much as blood-letting.  WAKE UP ENDOCRINOLOGISTS!! WAKE UP!!

*Check out patient response to the newly formulated Armour below, and add your own comments.

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