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As Susan Boyle of the UK had a dream which came true, I too wish from the deepest place in my heart that someday soon, SOMEONE from the mass media will FINALLY get smart and do a wide-reaching story for the hundreds of millions who are still on T4 meds like Sythroid, Levoxyl, Levothyroxine, Eltroxin, Oroxine…and who have depression or a myriad of other lingering symptoms of a sucky, laughable and shameful treatment.  This video inspires me today just as it did a few weeks ago.  Enjoy and dream with me. http://www.youtube.com/watch?v=bFzS0wgwyW4&annotation_id=annotation_179773&feature=iv

Janie

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*See below on how being on T4 meds can affect your liver. And below that–why I’m handing my promise ring back to Forest Pharmaceuticals.

I’ve been noticing several articles coming out the past week about a strong association between hypothyroidism and a twice the risk of liver disease and liver cancer, especially in females. And then it dawned on me: another strong reason to play basketball with your trashcan using your lousy Synthroid, Levoxyl, Levothroxine or Eltroxin bottles while being replaced with desiccated thyroid.

In other words, continued hypothyroidism (being on the lousy T4 meds) and undiagnosed hypothyroidism (because of the inadequacy of the TSH lab test) can potentially promote the development of nonalcoholic steatohepatitis, a more severe Fatty Liver disease. The next progression is liver cancer, aka hepatocellular carcinoma (HCC).

Even worse, the study revealed that women who had been hypothyroid for more than 10 years had a threefold higher risk of liver cancer compared to women without a history of thyroid disorders. This will make you pause when you consider how many reports there are of patients having hypothyroid symptoms for YEARS with a normal TSH…and a clueless, TSH-worshipping doctor.

And if reading this bores you, understand that your liver is a HIGHLY important gland that you can’t live without. It plays a key role in detoxifying the toxins you ingest and breath in daily (including smoking), besides being a major fat burner.  Make the liver diseased, and you become a breeding ground for toxins, the rise of other diseases…then death.

The solution? Run from TSH-kissing doctors, get on desiccated thyroid like Naturethroid et. al.  and avoid the most common mistakes of dosing while ceasing to smoke, curtailing the alcohol, and eating healthy (except for the daily dose of chocolate I gotta have. haha).

P.S. The original report came out in the May journal issue of Hepatology (published by John Wiley & Sons on behalf of the American Association for the Study of Liver Diseases).  Similar results were also reported in the Journal of Gastroenterology and Hepatology 2005.

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See below about my disappointment in Forest Pharmaceuticals.

With the recent blog post by health writer Mary Shomon concerning Dr. Sidney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Management Advisory Committee, there has been much brooha and fear-mongering on thyroid patient groups.

Why? Well look at it this way. This is a man of stature. He is an MD, an Adjunct Professor of Medicine, the director of Public Citizen’s health research group which promotes drug safety and public health, and editor of the newsletter Worst Pills, Best Pills, and since August of  ’08, a member of the Drug Safety Committee.  He also has a resume a mile long.

Yet in spite of his seemingly caring activism for our health and well-being, and his immense experience and education, he is clearly and completely off-base about Armour and other desiccated thyroid prescription drugs.

For example, as as editor of the Worst Pills, Best Pills newsletter,  Wolfe declared Armour desiccated thyroid as a “Do Not Use” product because it is not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available”. (Gee, funny how our experiences are completely otherwise….)

Then in the May 2003 issue (of which you have to have a paid prescription to read), he wrote an article titled  “Do Not Use! Natural or Desiccated Thyroid (ARMOUR THYROID) For Thyroid Hormone Replacement Therapy.” In that article, the clueless Wolfe stated that he supported The American Thyroid Association’s statement “There is no evidence that desiccated thyroid, a biological preparation, has any advantage over synthetic thyroxine.” (I guess millions of us and our improved heartrate, stamina, cholesterol, depression and more…aren’t evidence?)

He then proposes that Armour is mostly prescribed for weight loss, is a niche market for the unscrupulous, and concludes with “if you are offered natural thyroid hormone replacement treatment for any reason, this is a red flag and you should get a second opinion.” In a letter to consumers, Wolfe and Public Citizen state that that T3 is only needed from conversion and is predictably found from conversion, that the T2 and T1 also found in desiccated thyroid has essentially no activity, that desiccated thyroid is an unpredictable mixture, that is has no predictable biological activity…plus so many more complete and total inaccuracies based on “intellectual head chatter” not on observation and experience.

Thud.

Mary Shomon, in 2003, did a bang-up job trying to communicate with Wolfe, Worst Pills, Best Pills, and Public Citizen about the inaccuracies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chapters 1 and 2 in the STTM book which are enlightening those reading it all!

So we are left wondering, six years later, what his four-year appointment to this committee will mean. But let’s make a few things quite clear to contrast some of the fears going on and expressed on thyroid groups:

1) Armour is not being banned.
2) Wolfe is one of a current 9 members of this committee. Wolfe is not “the committee”.
3) Wolfe and seven others currently have voting rights. He is the only “Consumer Representative”.
4) There are still six more vacancies.
5) The committee is NOT the power. They simply make recommendations. And historically, the FDA can be slow to act on their recommendations, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medication like desiccated thyroid).

So what can you do? I challenge you to follow and act on the below, which puts our energies into communication, not feeding the ego and power of a misguided man with our overtly expressed fears as if they have actually come to pass :

1) Remember 1-5 above. Armour is fully available. Keep the facts straight, and fear-mongering down.

2) STTM has a powerful and growing page of testimonies of those who switched to desiccated thyroid.  Are you in there? If not, you need to be. This website currently has a huge audience. It’s noticed by doctors all over the world, as is the STTM book, which is YOUR book of YOUR experiences,  which is also being ordered by doctors. Use the Contact Me form at the bottom of that page.

3) Tell your experience with Synthroid or other thyroxine medications at the following websites:  www.rateadrug.com,  www.drugs.com,  www.askapatient.com They don’t include any of the desiccated thyroid meds yet, but you can tell of the negative experiences with all the T4-only drugs, including adrenal fatigue if you fell into that, and all your lingering thyroid symptoms.  The above links will take you to their Synthroid page–you can search for the other T4 meds.  Remember to mention Armour or other desiccated thyroid meds and how they have helped you!! Update: thyroid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only experience to MedWatch, the FDA’s  program for reporting problems.  You will see an Online Reporting Form to download. Don’t fail to mention which problems were removed or greatly improved when you switched to Armour, or the fact that you now have to deal with adrenal fatigue thanks to the inadequacy of T4-only treatment. You can also call 1-800-FDA-1088, but remember: your call is not to draw attention to Wolfe’s opinions! It’s to draw attention to how lousy a treatment T4 is as compared to how much better Armour has been.

5) Go to my article titled Synthroid Sucks: the Rallying Cry of Thyroid Patients vs. Clueless Doctors and comment on this article, including mentioning what Armour, Naturethroid or other desiccated thyroid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask questions and YOU can answer, mentioning YOUR experience and how much better desiccated thyroid has been. Clicking on that will take you to the Synthroid patient questions. Answer them. Be careful with links–they may not catch them at first, but will remove them if they do.  You can mention website names, tho, like Stop the Thyroid Madness.

7) Send people here to follow all these steps. Power is in numbers!

8 ) Use the following website to email or write your senators and representatives: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remember this!  Here’s a template letter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and places to write or call, add your comment to this post. Remember,  put your power in communication! LOTS of communication.

P.S. Did you know that the American Thyroid Association, in cooperation with the American Association of Endocrinologists, together support January as “Thyroid Awareness Month”…which is supported through an unrestricted grant from Abbott Laboratories, the makers of Synthroid?? Major UGH.

When I  was ten years old, my mother had electric shock treatment.

The memory stands out in my mind like a beacon. And when my Dad brought her home, he took me aside and explained that my mama was not going to remember where things are for awhile, and we’d have to help her. That was especially true with the 4-legged sewing basket.

She eventually regained her memory. But she was never again the same bright and quick witted mother I used to have when I was younger.

Why was shock treatment done?  To counter her mysterious ongoing and disabling depression.  And this was her last option.

It didn’t work.

She lived on anti-depressants, specifically a high dose of Elavil, the rest of her compromised life.

And more than 40 years later, about a year after her death, a change in my own life with Armour helped me realize why she had to be dependent on an anti-depressant for so many years:  Synthroid.  My mother was on Synthroid almost her entire adult life—a medication, along with Levoxyl, Levothyroxine, Unithroid, Eltroxin, Levaxin, Norton, Eutrosig  and Oroxine, which leaves nearly all patients with lingering hypothyroid symptoms, including one of the most common one:  chronic on-going depression.

And a large body of doctors all around the world just don’t get it.

What brought this memory of my mother up in my mind? Because two days ago, I chatted with a gal on Synthroid.   By all appearances, she seemed to be doing well, as some will make you think.  She said she had enough energy, wasn’t losing her hair, and felt okay. But when I probed deeper, she admitted that her blood pressure was going too high (as happened to my mother on a T4-only med) and she had a problem with depression and was on Wellbutrin.  Bingo.

See http://biopsychiatry.com/hypothyroidism.htm which is also here: http://www.theannals.com/cgi/content/abstract/34/10/1142

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Just two months ago on January 15th, I wrote an article titled Ten Reasons You May Still Feel Bad.  Nearly every hypothyroid patient can have some of those ten problems, and if so, they need to be discovered and corrected.

And one of those issues was low B12. B12 is a vitamin which has a key role in cell metabolism of your entire body, giving you energy, sharpness in your brain, and healthy nervous system functioning.

And unfortunately, a certain percentage of hypothyroid patients have low levels of this important vitamin, largely due to digestive issues common with hypothyroidism– either undiagnosed due to the lousy TSH lab test, or undertreated on T4 meds like Synthroid, Levoxyl, Levothyroxine, Eltroxin, etc.

Symptoms of low B12 can vary from person to person, but can include numbness and tingling in your hands or feet,  tremors, poor reflexes, tongue soreness, leg pain, or difficulty walking with balance.   Psychologically, you may have memory issues, confusion, or depression. Young women may have difficulty getting pregnant due to low B12.

When doing lab work, you want a result in the upper end of the range.  To correct inadequate levels of B12, you’ll want to use high oral B12 (methylcobalamin is the recommended form of B12), B12 cream, or injections by your doctor (especially if you have pernicious anemia) .  It’s also recommended to increase your consumption of meat and dairy products, which can be rich in B12.

March 27, 2009 is the kick-off date to begin an awareness campaign of B12 health, with September 23rd being “Vitamin B12 Awareness Day”. And I highly recommend the book Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, R.N. and Jeffrey Stuart, D.O., who are spearheading this awareness.

Have you found yourself with low B12? Tell us your symptoms, how you treated it, and how long it took to stop the symptoms.

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