A Deceptive Disease

this article gave me os much hope. i am 19 years old and have been feeling off-kilter for about a year now, but the past three months have just been utter hell. i don't have the energy to walk a block down the street and i'm pulling fistfuls of hair from my head in the shower, but 10 doctors now have sent me home with a cursory "your labs are fine." my labs may be fine, but i am not and no one is listening to me. on friday, an ednocrinologist finally palpated a tiny, tiny nodule on my thyroid, so small that she ordered an ultrasound just be sure it wass there. the tiny nodule is actually more than 2 cm, and there's a history of thyroid cancer and thyroid disease in ym family. the doctor's keep saying the nodule can't possibly be the cause of my symptoms because my tsh, t3, and t4 are all "within limits."

it's so good for me to hear that someone else went through this and ultimately triumphed. thanks for sharing your story.

Shara, you where someone special to me at one time in my life, and Im very happy you where able to triumph from all of this. Im sorry I wasn't able to be in your life to be an emotional support for you in a time of need.

in 2009, I hope the sun shines brighter for you and you are surrounded by good friends and your life is treating you well. I still think about you often :)

a boy who missed you, now a man who misses you....

I'd certainly encourage doctors to draw blood for a thyroid exam annually as the author suggests, particularly for patients experiencing symptoms like the author describes. However, it should be noted that most individuals with thyroid cancer have NORMAL levels of thyroid hormone -- the blood test the author describes is not diagnostic for thyroid cancer, but rather for hypothyroidism (an underactive thyroid) or hyperthyroidism (an overactive thyroid). As part of your annual physical, the doctor should physically feel your thyroid and neck to see whether there are any nodules or lumps, and order an ultrasound scan if he or she feels anything suspicious.

Thanks for this article.. I hope the author is continuing to do well. Facing a missed diagnosis that could shorten your life, gives one pause.. Doctors make mistakes, but this is tragic.. to have had so many yrs of not feeling well, lost quality of life, lost time, etc.. I hope this article helps parents to listen to their kids, and keep looking for answers, Same for adults. Endocrine diseases may be slippery,, but a MD that is hands on, thorough with labs, and persistent in caring about finding the cause of a patients; complaints, will be a life-saver, literally. We need more of those type of doctors!! Listen,to the patient, and patients, find a doctor who will.! All the best to all cancer surviors.You are all heroes.( a suggestion.... Reprints of this article should be distributed to schools, women's centers, gymns, etc!).

It took at least five years for my GP to finally diagnose me as hyperthyroid (it took me another four months to discover she didn't really know how to treat it and needed to see a specialist, who had me do an Uptake & Scan Test to determine the cause, Graves' Disease). I too found out the hard way that thyroid levels are not part of a regular annual exam and that most doctors don't know squat about thyroid disease. I trusted that my doctor knew what she was doing but she did not. Unfortunately many symptoms of thyroid disease are vague and common symptoms of many other diseases so it's hard to diagnose. But I completely agree that doctors need to be better educated about thyroid disease as an estimated 40 million Americans have thyroid problems, and about half are undiagnosed.

As a Head and Neck surgeon, I am alarmed at the amount of misinformation in this article. The symptoms described at the beginning of the article are extremely nonspecific and common -- what's more, they cannot be attributed to well-differentiated thyroid cancer (WDTC). WDTC is not a functional disorder and is asymptomatic unless far-advanced. The blood test described in the article is probably a thyroglobulin level which is used to monitor recurrent or metastatic disease AFTER treatment. It has no use at all prior to thyroidectomy and does not help detect undiagnosed disease.

That being said, I sympathize with this young lady's plight and basically agree with her advice regarding second opinions and asking questions. However, I am disappointed with Newsweek for publicizing false medical information and would point to this as an example of how a little bit of knowledge can be very dangerous.

Beaufiful article. I can relate partially to the author's experience, noting that I'm currently taking medication for a bad thyroid and am only 18.