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Thyroid Awareness in 2005: The REAL Issues Thyroid Patients Face
A Patient Advocate's Look at the Pressing Concerns

By Mary Shomon, About.com

Updated: January 14, 2005

About.com Health's Disease and Condition content is reviewed by our Medical Review Board

Jan 14 2005
According to the AACE and the ATA, some 27 million Americans have thyroid conditions. These groups got together and brainstormed their annual Thyroid Awareness Month campaign. Among the many issues facing thyroid patients, these groups, which purport to represent the best minds in endocrinology, felt that the most pressing issue to highlight for the 2005 Thyroid Awareness Month campaign is the fact that patients should stay on one particular brand of thyroid drug. Is this really the most important issue facing America's thyroid patients? Is this the best that the nation's top endocrinologists and their PR people can come up with? [For more information, read my article "AACE/ATA Launch Questionable Campaign for January 2005 Thyroid Awareness Month"].

I don't believe so. There are many far more urgent issues thyroid patients face, issues that affect our day-to-day health and ability to live well. For example...

Laboratories and Doctors Are Not Following Their Own Recommended TSH Guidelines

The TSH (Thyroid Stimulating Hormone) blood test is considered by conventional doctors to be the "gold standard" for diagnosing thyroid disease. Only if your levels fall outside a numerical range known as the "normal range" will most physicians diagnose you with hyperthyroidism (an overactive thyroid) or hypothyroidism (an underactive thyroid.) Given the overriding importance of the TSH test to the conventional medical world, it's hard to understand why in 2005, there is no nationally-accepted and nationally-known standard for what that TSH normal range actually is.

In late 2002, the National Academy of Clinical Biochemistry, part of the Academy of the American Association for Clinical Chemistry (AACC), issued" Laboratory Medicine Practice Guidelines for the Diagnosis and Monitoring of Thyroid Disease." These guidelines, published online in their entirety, said:

"In the future, it is likely that the upper limit of the serum TSH euthyroid reference range will be reduced to 2.5 mIU/L because >95% of rigorously screened normal euthyroid volunteers have serum TSH values between 0.4 and 2.5 mIU/L."

"A serum TSH result between 0.5 and 2.0 mIU/L is generally considered the therapeutic target for a standard L-T4 replacement dose for primary hypothyroidism."

In response, the American Association of Clinical Endocrinologists (AACE), as part of its January 2003 Thyroid Awareness Month activities 2 years ago, issued a press release, saying::

"Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range . Now AACE encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now."

Here it is, 2 YEARS LATER, and almost all the laboratories in the United States still show .5 to 5.0 as the normal reference range for the TSH test. This means that any blood test results in that range are NOT marked "abnormal." Since many doctors do not know about the new guidelines, they rely on their lab reports to flag abnormalities, and are missing those people with TSH levels outside the new range.

Even those who know about the new guidelines may not follow them, fearful of "going out on a limb" to diagnose a thyroid condition when the paperwork doesn't "flag" the TSH as abnormal.

Bottom line: MILLIONS more people than previously thought have undiagnosed, untreated thyroid disease, yet even WHEN tested, these people can't get diagnosed and treated because the endocrinologists and labs are dragging their feet in adopting and recognizing a new TSH normal range standard.

27 Million is an UNDERstimate of the Total Number of Thyroid Patients

The 27 million person estimate is based on OLD lab standards of what is considered normal thyroid function. When you consider that the new lab standards narrow the range, that means that there are millions MORE Americans with clear-cut thyroid disease. We could be talking about as many as 30 million, 35 million or more Americans.

An Estimated Half of All Thyroid Patients are Undiagnosed

More than half of the people who have thyroid problems ARE NOT DIAGNOSED, and are walking around suffering from thyroid disease symptoms. That means that at least 13 million Americans -- and given the lab value controversy, most likely many millions more -- have undiagnosed thyroid disease. Not to mention the poor quality of life caused by untreated thyroid symptoms, undiagnosed and untreated thyroid conditions also increase your risk for heart disease, obesity, depression, stroke, high blood pressure, miscarriage, stillbirth, birth defects and retardation in infants, infertility, and many other serious health problems.

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