Is Thyroid Disease Really So "Easy to Treat?"

Hypothyroidism and hyperthyroidism diagnosis and treatment

Patients Talk Back

The Internet has dramatically changed what patients know about thyroid disease, and how they communicate with their doctors. The worldwide exchange of information among thyroid patients has raised patient awareness of symptoms, options, and alternatives in diagnosis and treatment. It has also allowed patients the opportnity to find out that they are not alone in being plagued by continued symptoms, and to discover that the doctors who say one little pill is an easy treatment aren't aware of the latest information and research that is available.

Avoiding RAI for hyperthyroidism is something increasing numbers of patients are attempting to do, using alternative and nutritional approaches, Chinese medicine, and other treatments, supported by the easy communications ability provided by the Internet. One of the most vocal opponents of RAI is a patient and researcher, John Johnson, who has been running a listserv and forum dedicated to nutritional approaches to hyperthyroidism for several years. Johnson is assembling a new site -- http://www.ithyroid.com -- dedicated to nutritional treatment of thyroid disease, and helping patients avoid RAI treatment for Graves' disease and manage hyperthyroidism using diet and supplements. Says Johnson at his website:

"Most doctors in the U.S. push RAI very heavily and try to get their patients to undergo it ASAP. Most doctors in Europe don't push RAI but favor maintenance on antithyroid drugs (ATDs) because of the high rate of "spontaneous" remissions and the possibility that RAI causes permanent damage to the body and may significantly increase the risk of cancer."

Regarding hypothyroidism, there's a movement afoot by patients who are tired of being told how easy to treat their condition is, and how it needs to be taken more seriously. On the About.com Thyroid Bulletin Boards, there are posts daily from dozens of patients who are frustrated by the fact that their doctors don't take them seriously, or dismiss symptoms that continue after treatment as unrelated to thyroid disease.

This recent media coverage has also inspired patients to speak out. Frequent poster "TheRose" had this to say about the current media coverage of thyroid disease:

"When women complain about the inaccuracies of such articles, and state our own experiences as evidence, it's written off because we're considered "moody" (at best) by sheer reason of gender! Since WE are not taken seriously, our message isn't given the credence it needs, either! Meanwhile, too many men feel they have to be seen as strong, healthy, manly, etc etc etc (Ah, stereotypes!), so they don't complain, and that skews the image of thyroid disease even further! WHAT a Catch-22!!"

Another poster, Judy writes:

"I would LOVE to be able to tell someone, anyone, the things we go through every day and not be met with that blank look or a nod of the head. My sister-in-law, who happens to also be my best friend, doesn't even seem to understand. I really feel that this comes from years of everyone hearing about thyroid disease and "that little pill" myth, and thinking well it's something that can be controlled. Wouldn't it be great to be able to stand up in front of a group of people and tell them, "this disease has affected and changed not only my life, but the lives of everyone who once knew and loved the REAL me"? Oh well, we'd probably still get that look."