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To ROSIE O’DONNELL

Aha!! Betcha that a lot of you who saw the title of this post thought that Janie was going to use her STTM blog as a political arena! Well…..I’m not. What I am going to do is speak to Rosie O’Donnell as a fellow human being.

Valerie, the mod of the Adrenal forum, emailed me this morning about a post that occurred on Rosie’s website on May 19th, 2007. The post by “Stacey” said “Rosie, have u evr had ur thyroid cked? I thought I was crazy…..anx, depr, panic….my thyroid was way out of whack. Plz ck this website out. www.stopthethyroidmadness.com Peace2u ~Stacy”

And Rosie replied “had it checked over and over .”

Well Rosie, if you didn’t check out the link to STTM on May 19th, I hope that someone sends you right here, because I want to explain something to you: Millions of women and men just like you have had our thyroids checked “over and over” and we have all been told we were normal, it’s not our thyroid, our TSH is optimal, we need to be on anti-depressants, we need to eat less, we need to exercise more…..blah, blah, blah. Ad nauseam. www.stopthethyroidmadness.com/give-me-a-break

Additionally Rosie, the tests that most well-meaning but unknowledgeable doctors use are not going to give a single clue about your continued hypothyroid state. Additionally, patients have learned that “normal ranges” mean squat. You will stay hypothyroid in many parts of that so-called normal range. www.stopthethyroidmadness.com/recommended-labwork

And finally Rosie, in addition to your obvious hypothyroid symptoms, I see evidence that you may have adrenal fatigue. When a person remains hypothyroid due to the failure of doctors to listen to clinical presentation, your adrenals have to take over to keep you functioning. And over time, they wear out and become sluggish. That means you don’t produce enough cortisol to help you cope with stress. And life can become an emotional rollercoaster, besides feeling like an old piece of chewed gum on a Manhattan sidewalk being stepped on by thousands of happy squishy feet daily. www.stopthethyroidmadness.com/adrenal-info

Bottom line, to Rosie and any human being out there who might identify with weight issues, anxiety, depression, poor stamina, and/or feeling unbearably stressed out…there is hope, and it’s not coming from the majority of doctors out there, nor their labwork or being on Synthroid, Levoxyl or any other T4-only med. It’s coming from patients who finally got sick and tired of feeling like crap, having obvious hypothyroid symptoms, and being told we were NORMAL!! That’s exactly why I created this website. This website represents what thousands times thousands of us have learned, and how our lives our changing. It also represents what doctors NEED TO LISTEN TO. www.stopthethyroidmadness.com/things-we-have-learned

Here is my story. Here are stories of others. And the latter only BARELY touches the changes that are going on out there.

Rosie, there is a chaos and tumult of terrorism in the way billions of thyroid patients have been diagnosed and treated for more than five decades. We have been left sick thanks to the lousy treatment of T4-only meds, thanks to labwork and their dubious ranges which have failed us, thanks to doctors who tell us it’s all in our heads and put us on a slew of other prescription meds, and thanks to be social constraint that we must walk into that doctor’s office and give our power away. It’s wrong. It’s medical mayhem. And we are FIGHTING BACK! Stop the thyroid madness!

Janie

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Oh..oh..oh..do you think the Endrocrine Society is going to understand FACTS???

NO.

The Endocrine Society’s 89th Annual Meeting is going to occur in Toronto, Canada, June 2-5th this year. And one of the scheduled presentations is titled: Thyroid Hormone Therapy: Why Some Patients Are Unhappy.

Now based on that title, you can be an optimist and decide that yes…a presentation is going to be given that will give a clue why MILLIONS of us are unhappy, unhealthy and reeking of hypothyroid symptoms with a “normal” TSH….and have been for FIVE DECADES!! It’s enough to get your hopes flying.

But below is what was said by the speaker:

Today, pure synthetic T4 is the medication that the vast majority of hypothyroid patients use. Most physicians now consider desiccated thyroid and the combinations of synthetic T4 and T3 to be obsolete. Since they contain both T4 and T3, and T3 is absorbed and used by the body more quickly than T4, their T3 content can cause some patients to develop temporary symptoms of hyperthyroidism (palpitations, nervousness) after a tablet is taken. Also, desiccated thyroid, derived from slaughterhouse animals, may have variable potency from batch to batch, depending on the animals’ diet, the season of the year, and the species of animal used to make the tablets.

Huh?? That “obsolete” desiccated thyroid is turning lives around 180 degrees! And those “temporary symptoms of hyperthyroidism” are caused by low cortisol in some, not by a problem in the tablet. And finally, funny that those of us on dessicated thyroid aren’t noticing any issues of variability.

So, unless I hear differently, I can only presume that in early June, these Endocrinologists will only continue to be prescribing medications that do NOT work (e.g. Synthroid), and making ink spots on a piece of paper (called the TSH lab and range) far, far more important than obvious hypothyroid symptoms in their patients. i.e. they will continue the treatment which has only served to keep ALL of us SICK.

Cuiusvis hominis est errare; nullius nisi insipientis in errore perseverare

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I tried to get a STTM book published–to no avail

In my advocacy, I noticed that there were potentially millions of women out there who either don’t use a computer, or if they do, they have no clue that the symptoms they experience are due to an inferior medication called T4-only, or compounded by adrenal fatigue. I’ve been shocked how many I come into contact with even in my small little world. And if you multiply that times the large and growing global population who have hypothyroid, it’s potentially millions who walk around clueless.

To reach them, I did the book.

But…because of other thyroid books out there, I’ve been unable to convince either a publisher or an agent that I have a different focus–i.e. STTM is based on PATIENT EXPERIENCE and for that reason alone, provides a totally different focus with unique information! This website proves it!

But sadly, unless you are a thyroid patient who has lived years and years of being told….

1) your symptoms are all in your head
2) you are normal, normal, normal because a TSH lab result says so
3) your high cholesterol, aches and pains, thinning hair, poor stamina and weight gain are normal parts of aging
4) you need to fill this prescription for an antidepressant, statin and pain med to treat those “other” symptoms
5) there’s nothing wrong with your adrenals

…you won’t get the need for the book. And sadly, they haven’t.

So…this website will be providing ways for YOU to spread the word, and hopefully over time, we can reach those millions who either don’t use a computer, or who don’t get that their high cholesterol, aches and pains, thinning hair, poor stamina and weight gain ARE due to an inferior treatment and a doctor who relies solely on the TSH….and there’s a MUCH better treatment.

Right now, STTM has a flyer you can use, and coming soon: t-shirts and business cards.

If I can’t find an agent or publisher wise enough to see the need for the STTM book, they YOU will be the messenger, and we’ll help the best we can. 🙂 STOP THE THYROID MADNESS!

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Richard Simmons, weight issues, and my friend Helen

I have an internet friend named Helen Trimble. Helen is an intelligent, witty, and funny gal whom I’ve had the pleasure of knowing for almost a year. And recently, Helen sent several of her friends an audio of a recent conversation she had with beloved fitness guru Richard Simmons. In that delightful exchange, Helen shared that she has lost 83 lbs over the past year, and praises Simmons for the important role he and his diet tips played in her weight loss.

But Helen made a key comment in that conversation: that her long years of non-diagnosed hypothyroid played a major role in her weight gain..i.e. it wasn’t just getting older or eating wrong that was doing it. And why was she undiagnosed so long? Because of the failure of doctors and the TSH lab range to give a true picture of what was going on.

In a conversation with me, Helen stated: “For years after childbirth, I went on yoyo diets, starving myself to death, and still did not lose weight. The only thing I lost was energy, hair and eyebrows. I was gaining weight on 1200 calorie diets, whereas when I was healthy and active, I was 124 pounds and ate a 2400 calorie a day diet.” And Helen’s years of unexplained weight gain put her to nearly 300 lbs.

But the turning point for Helen was not just Richard Simmon’s contagious enthusiasm or his diet tips, even if they were and have been extremely helpful. The turning point was when Helen had many conversations with Valerie, the moderator of the Adrenals forum and whom Helen states is her hero, and finally found out about Armour a year ago, besides treating her low cortisol–the latter a common problem with many hypothyroid patients.

Says Helen: “Today, I am now losing at least a pound a week on a 1500 calorie diet and my apple shape is changing. I eat when I am hungry and put a little protein in my body every 4 hours. I had put most of my weight on in the middle…I cannot help believe that the hormone imbalance is the reason for this. As we all have switched to Armour, and get closer to optimized, our body shape changes, faces change, and the weight comes off.”

But just as striking as the above was Helen’s next statement. She works in a pharmacy at a large store, handing prescriptions to patients: “Now when I look at the obese women who come to pick up their prescriptions for Synthroid, a bell goes off. We all look the same, eat the same, and have the devastating symptoms.”

THAT was a clincher! Helen, who has herself experienced the weight gain due to untreated hypothyroid, sees mirror images of herself every day when she hands Synthroid or other T4-only meds to women–women who look just like she has! HUNDREDS OF WOMEN! And what does that say? Exactly what this site is saying: that Synthroid and Levoxyl and all other T4-only meds are leaving patients UNDERtreated, and weight gain is the side effect of a poor treatment

Richard Simmons: Helen and I have a strong suspicion that a certain or large percentage of those wonderful women and men you work with are either undiagnosed hypothyroid (due to doctors overreliance on a faulty lab called the TSH with it’s dubious range) or are UNDERtreated on a T4-only medication. These T4-only meds have been the ineffective treatment of choice by doctors for five decades, and have left millions of patients all over the world with continuing hypo symptoms, and doctors telling them to diet, exercise more, or get on an antidepressant! Stop the Thyroid Madness!!!

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Ted thanks us…and I thank him for doing so

Below is a comment made by Ted on the forums on this site, and it expresses his appreciation to the moderators who give back their time and information to other patients.

But what I also see is that it’s patting the back of thousands of you whom I observed…and whose experiences I used, besides my own, to create the energy and message of this patient site–that T4-only treatment has been a disaster, that dosing by the TSH and it’s dubious range is mostly a failure, that there are better labs your doctor can use, that desiccated thyroid is a better treatment choice, and that many patients have adrenal fatigue that needs to be addressed by their doctors!

By the way, I can’t believe the veritable treasure trove of information on this forum. I’ve learned more about my health status, and how to deal with it in one month here, than I’ve learned in the last 15 years of searching books and talking with doctors. It’s hard to argue with all the practical experience and hard-learned lessons found here, even for a hard-headed retired biochemist. All you moderators are to be congratulated for your tireless energy and willingness to listen (and respond) to what seems to be an ever-growing number of very sick people. THANK YOU ALL!!!!!

And oh how I thank Ted back for those wonderful words. The very purpose of this site, and of those that contribute, is to educate patients. And it appears to be working! And hopefully, that education is being carried to the doctor’s office, and in turn, creating the beginning of a MAJOR change in the way hypothyroid patients are diagnosed and treated. It’s long overdue.

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