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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 Lthyroxine (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.

The FDA is improving T4’s potency….but it won’t change one particular FACT…

Is this akin to “improving” cardboard?

The FDA announced today that they are tightening the potency specifications for levothyroxine sodium (aka Synthroid, Levoxyl, etc) “to ensure the drug retains its potency over its entire shelf life” rather than what often occurs with any T4 med: the deterioration of T4 before it’s expiration date. They state that this tightening will improve the quality of the product.

Cough.

Let me give you some history. After it was isolated, T4 was first produced as a treatment substance over 80 years ago. The T4 did result in some improvement in patients they tried it on at the time. But guess why they never gave it to patients beyond the early experiments? BECAUSE THEY KNEW IT WASN’T STABLE. They knew that fact 40+ years before it came back on the market in the 60’s due to the heavy and moronic pharmaceutical promotion.

And the irony of this so-called improvement is that it’s NOT going to stop the deterioration of T4. They are only attempting to stop it before “the expiration date”.

Sorry FDA. You can improve the tensile strength of cardboard, but you can’t improve the FACT that T4-only meds are about as effective as giving a hypothyroid patient CARDBOARD…whether it’s stable or not.

http://www.fda.gov/bbs/topics/NEWS/2007/NEW01717.html

(Thanks Stephanie)

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

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!

Chronic Fatigue Syndrome could be UNTREATED or UNDERTREATED hypothyroid!

Though this post was first created in 2006, it’s been updated to the current day and time! Enjoy!

On Thursday night, Nov. 2nd, 2006, I was concerned.

NBC News had a short segment by Robert Bazell, their Chief Science and Health Correspondence. And Mr. Bazell and NBC news announced that there’s a “mystery illness that afflicts more than one million people in the United States, especially women”. And they confirmed that the government (Centers for the Disease Control aka CDC) is telling doctors: it’s real. And it’s called Chronic Fatigue Syndrome…or Myalgic encephalomyelitis, abbreviated as ME, in Europe.

I remember when the term CFS was coined in 1988, even without a specific cause or marker. I remember when they surmised it was due to Epstein Barr Virus. I listened when Mayo Clinic stated that CFS was a “complex disorder”. I have listened when Georgetown University Medical Center stated that “chronic fatigue syndrome (CFS) may be rooted in distinct neurological abnormalities that can be medically tested” and may be a “legitimate, neurological diseases and that at least part of the pathology involves the central nervous system.” I also listened when CDC stated that CFS was “unexplained fatigue of greater than or equal to six month’s duration.”

For years, I have listened to the symptoms of CFS/ME with openness and great sympathy. I listened when I read that small outbreaks of similar fatigue disorders have been described in the medical literature since the 1930s

And I personally KNOW that unrelenting and debilitating fatigue is real. I know that incapacitating fatigue is real. I know symptoms can be variable, individual, and fluctuate in severity, and that friends and family may not really get how sick they are. I have also lived with chronic, debilitating fatigue, as have millions of others whether they were classified with CFS/ME or not.

BUT….to say that it’s a mysterious illness highly concerns me… for thyroid patients. We’ve had too many doctors proclaim CFS/ME when we presented our fatigue, yet the reality has been poorly treated hypothyroidism or Hashi’s, not a mystery.

And here are interesting facts for hypothyroid or Hashimoto’s patient who get this CFS/ME diagnosis.

1) Chronic Fatigue Syndrome as the label for a mysterious disorder seemed to make it’s appearance within the decade after the lousy but highly acclaimed TSH lab test was created in the mid-1970’s, and during a time when most all patients had been switched from the successful desiccated thyroid to thyroxine-only treatment..the latter which patients now know have been huge failures in the treatment of hypothyroid.

2) Most of the symptoms listed as belonging with CFS are the VERY same symptoms reported by patients who were on inadequate T4-only medications and who were dosed by the TSH. Also, those are the same symptoms that other patients had when they were told they had NO thyroid problem (due to inadequate testing and evaluation of those tests). Additionally, all the symptoms were eradicated when the patient was optimally treated on Armour.

3) Many of the symptoms listed as being those of CFS are the exact same symptoms related to having low functioning adrenals—a VERY common condition that accompanies hypothyroid is a large majority of hypothyroid patients, and which doctors ROUTINELY know NOTHING about. For example. the following symptoms are listed as CFS symptoms, but are ALSO symptoms that hypothyroid patients with low cortisol often have: allergies and sensitivities to noise/sound, fainting, fever, dizziness, balance problems, night sweats, sensitivity to light, anxiety, panic attacks, personality changes, mood swings, unrefreshed sleep…and others.

I am BOTHERED BY THE SIMILARITIES ABOVE!!

I am bothered by the fact many hypothyroid patients who come onto the many thyroid-related discussion groups state they had the diagnosis of Chronic Fatigue Syndrome when they once were on T4-only medications and were dosed by the lousy TSH.

I am bothered when CFS is classified as a “real illness” when these very same patients on these sites lose ALL those symptoms when they dose high enough with desiccated thyroid, ignore the TSH and instead, dose by the free T4 and free T3, and/or treat their low cortisol if it’s confirmed to exist.

I am bothered by the fact that many CFS sufferers are told they have no thyroid problem, when in fact, the hypothyroid-free diagnosis is usually based on very lousy labs called the TSH and T4…and often with no thyroid antibodies labs, which doctors routinely state is “unnecessary”. And if the doctor did do a free T3, he proclaimed the patient “normal” just because the number was “in range”. We, as thyroid patients, have learned that “in range” means squat.

I am bothered by the fact that several listed CFS symptoms are also those of low Ferritin, which leads to anemia, and which is a common condition with hypothyroid patients.

Now in all due respect to patients who have the diagnosis of CFS/ME, or those who suffer from debilitating fatigue–I have been there. I know there are REAL diseases, real conditions, which produce REAL fatigue that may or may not be related to having a diseased thyroid. I once had acute Epstein Barr Virus for a full year, and understand the deep misery and debilitation of fatigue. And I understand that there are other causes for chronic fatigue which include, but are not limited to, mito problems, viruses, enteroviruses, retroviruses, Herpes Viruses, Lyme, Mold and Candida albicans. I can also ascertain that some fatigue has unknown causes.

But I am deeply concerned that the “millions” that CDC is now stating as suffering from a “real disease” might in fact contain a large body who are suffering from untreated or poorly treat hypothyroidism or Hashi’s..

I want to make it clear that I am not saying that “everyone” who is classified as having CFS/ME has undiagnosed or undertreated hypothyroid. The world is not that black and white. But I do suspect, based on the information given above, that many in that “millions” possibly DO have undiagnosed or poorly treated hypothyroid, and/or adrenal insufficiency…and have not done the correct tests or the right treatment to confirm it, and to help RELIEVE them of their misery. The evidence is simply too compelling.