REPORT CARD RESULTS
Public Citizen
American Autoimmune Related Diseases Association (AARDA)
Drug Companies: Abbott Laboratories, Forest Laboratories and King Pharmaceuticals
Dairy Queen
Endocrinology Researchers
America's Doctors
Holistic/Alternative Medicine Community
American Academy of Clinical Endocrinologists (AACE)
U.S. Food and Drug Administration (FDA)
Larry Ladd, Perchlorate Activist
Drug Companies, Attorneys for the Synthroid Class Action Lawsuit
PDF Printer-friendly version of 2004 Thyroid Disease Report Card
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The American Academy of Clinical Endocrinologists (AACE)
Grade: C
In 2003, the American Association of Clinical Endocrinologists (AACE) has been both friend and foe to America's thyroid patients, earning them a C grade. The group kicked off 2003 with its annual thyroid awareness effort, and chose a worthy objective: to encourage the public's awareness of mild thyroid failure and the importance of routine testing for the half of all thyroid patients who are undiagnosed. Their campaign, titled "Hiding in Plain Sight: Thyroid Undercover," was a good effort to help get the word out.
The group turned around, however, and in May of 2003, in a US News & World Report article on patient-ordered blood testing, AACE president Hossein Gharib showed that he and his organization aren't always with the times or in tune with patients. Here's a quote from the article:
Many thyroid patients…have become convinced that they need a free T3 test to detect a specific thyroid hormone. They've dumped doctors who order only a more general test for TSH, or thyroid stimulating hormone. Free T3 is available from HealthcheckUSA as part of a $75 test. Yet it may not be worth ordering, says Hossein Gharib, a thyroid specialist at the Mayo Clinic in Rochester, Minn., and president of the American Association of Clinical Endocrinologists. "Hey, we live in a free world, but it's not a `free T3' world. TSH is the gold standard for thyroid function," he says. "T3 tests are not very reliable. And you would only try one if the TSH is abnormal." Yet patients with normal TSH who still feel lousy insist a further test can pinpoint their problem.
Clearly, Gharib and his colleagues have not been talking to the millions of patients who don’t feel well when subject to, as some practitioners have referred to it, “The Tyranny of the TSH.” And they haven’t been consulting with the many thousands of enlightened practitioners who believe that Free T3 testing is an essential part of their management of thyroid disease.
But the AACE redeemed itself somewhat when it encouraged doctors to consider using the TSH range of 0.3 to 3.04, rather than .5 to 5.0 -- as the diagnostic normal range for thyroid disease. AACE believed that using the new narrower range would result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated. AACE made the decision to narrow the range because of data suggesting many people may have low-level thyroid problems that could be improved with treatment and a narrower TSH range will give doctors reason to more carefully consider those patients. This announcement, while long-overdue, was much-needed, and represented a radical shift in the awareness of the endocrinology community. After decades of denying that patients within the normal range of TSH could in fact have a thyroid condition, they finally acknowledged what patients and advocates have been saying quite vocally for years: that the high and low end of the normal range is not, in fact, normal for most people.
It is, however, also clear that the endocrinology community still has a way to go in terms of true understanding of the patient condition, when you read that Dr. Gharib, in announcing AACE's new position, pronounced thyroid disease "a condition that is easy to diagnose and treat." (Question for Dr. Gharib – if it’s so easy to diagnose, why does your own organization estimate that half of the 27 million thyroid patients in America are UNdiagnosed?)
The AACE has finally moved into the 21st century in terms of its awareness that the outdated TSH reference range needed revisiting. But this acknowledgement of what patients and some enlightened practitioners have known for years is just a first step toward a far greater awareness that is needed. Let’s hope that AACE spends more effort keeping in step with the times, and more time listening to the needs of patients, and less time boasting how easy it is to diagnose and treat thyroid disease.
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