Newly diagnosed with Graves, but doctor never diagnosed it 1.5 yr ago

[iriss]

You won't believe my story when I tell you that my previous internist saw me 1.5 years ago (annual physical) and one year ago (for pneumonia and 13 lb weight loss). Each time he ordered complete labs but I am learning now that my TSH was very low each time (<.01) and he never contacted me! He thought I might have cancer due to the weight loss and ordered a complete body scan which I never did, because I felt well and didn't really want to know if I had cancer (I'm 46).
Went to a different internist last week and my TSH is again very low, and the T3 and T4 were each twice that of normal. A thyroid scan and uptake (showing an uptake of 65%), and a smooth gland. Diagnosis: Graves Disease.
I feel perfectly well and attributed my nervousness over the past year to personal problems (I was always high-strung to begin with). Thinking back, I did have finger tremors a couple of times, pounding heart one time, and now that I take my pulse I find that if I get nervous, it goes up to 110 beats/min. Otherwise it's around 80-88. I also had more frequent BM's than usual over the past year, but am back to normal since May. I gained some of the weight back (not all), but find it easier to maintain my weight than several years ago. I swear, I have no other signs (I'm a RN). All the signs I have had are transient and come and go once in a while. I don't have any of these signs on a daily basis whatsoever.
My internist is the type who thinks he can handle any problem and rarely refers to specialists. He insists my Graves has to be treated even though I feel well, because of the risk of osteoporosis and heart disease. He wants to order a bone density test to make sure I don't have osteoporosis now since I have had the Graves for a while and am small-boned. (more radiation). He also thinks I should have the RAI treatment and not even try Tapazole or PTU. I am dead set against burning out my thryoid with radiation because I'm afraid when all is said and done I will fell sick (when I don't feel sick now). I'll be hypothyroid in the future and who knows what that will be like (it's the unknown). Plus, there is a strong history of cancer in my mother's family. There could be such a thing as an oncogene and the radiation could predispose me to cancer down the road.
Question: Can I leave my Graves untreated since I feel well?
Shouldn't I give the meds a try first and do the most conservative thing first?
I keep thinking the thyroid also produces other things besides T3 and T4 (such as calcitonin) and taking Synthroid for the rest of my life won't replace the Calcitonin and any other substances the thyroid makes.
My first choice is to do nothing. But, if that is a bad idea, then I would want to try the meds. I plan to see an endocrinologist and get his point of view.
What should I do? Any statistics on untreated Graves Dieease?
Thanks

[Kevin Pho, MD]

I agree with the referral to an endocrinologist.

Here are the recommendations from UptoDate, which is a peer-reviewed medical text.  

"The choice of therapy should involve active discussion between physician and patient; it is also determined by the severity of the patient's hyperthyroidism:

- Patients with many symptoms of hyperthyroidism should usually be started on a thionamide (most often methimazole), and euthyroidism should be attained before a decision is made regarding prolonged thionamide therapy versus radioiodine or surgery.
- Thionamide therapy is preferred for children and adolescents. If, however, the thionamide is poorly tolerated or compliance may be an issue, then therapy with radioiodine or surgery may be necessary.
- Surgery is indicated for an obstructive goiter.
- Women desiring to become pregnant in the near future should be encouraged to choose radioiodine or surgery six months in advance of a planned pregnancy to avoid the need for a thionamide during the pregnancy.
- Several concerns of the patient also may influence the decision. As an example, the recommendation to avoid close contact with young children for several days after radioiodine administration may make this treatment temporarily unattractive if alternative child care is unavailable. Patient fears regarding radiation exposure or agranulocytosis also are important in selected cases.

We usually recommend, and most patients in the United States choose, radioiodine therapy. Although a thionamide provides control of hyperthyroidism as long as the drug is taken, the persistent remission rate when the drug is discontinued one to two years later averages only about 30 percent. There are, however, patients in whom it may be reasonable to delay radioiodine (or surgery). Included in this group are women with mild hyperthyroidism, and patients with small goiters or with goiters that shrink during thionamide therapy. If radioiodine is chosen, the patient must be comfortable with the decision to ablate the thyroid and be aware that prolonged thionamide therapy lasting even decades is an acceptable alternative as long the drug is tolerated and the hyperthyroidism is controlled. Physicians and patients must also be aware that radioiodine therapy may be associated with an increased risk of the development or worsening of Graves' ophthalmopathy." (1)

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

Bibliography:
Ross.  Treatment of Graves' hyperthyroidism.  UptoDate, 2003.

[iriss]

The most important question I wanted your opinion on in my origianl post was whether the Graves Disease really needs to be treated, or not. i feel fine hyperthyroid. Why can't I just leave it at that.

[kevinmd]

In general, Graves disease should be treated.  Serious complications of prolonged, untreated, or improperly treated Graves' disease include weakened heart muscle leading to heart failure; osteoporosis, or possible severe emotional disorders.

The choice of which treatment is dependent on the physician, but the information above has some discussion involving each therapy.

Thanks,
Kevin, M.D.