Kimberly
Online Facilitator
    Post count: 4290

    Hello – A reminder that I’m a fellow patient. This decision should ultimately be made between you and your doctor, taking into account your personal preferences and your medical history.

    My personal experience is that I took antithyroid drugs for seven years. I was literally leaving for vacation the day after I got diagnosed, so my doctor sent me on my way with a prescription for methimazole. I responded quickly to the meds, so opted to *not* do RAI. After 7 years, I weaned off & stopped the meds (under a doctor’s supervision) and had two years of stable labs. Then over a period of 2-3 years, I went hypOthyroid and had to start taking replacement hormone. That’s *not* the usual course of the disease – I believe it’s only around 10-15% of patients. Side effects with ATDs typically occur during the first 90 days, with *one* exception – vasculitis – that can occur with longer-term use.

    An old fashioned “pro and con” list can be helpful in sorting out your thoughts. When you read peoples’ experiences on the Internet, keep in mind that the vast majority of people posting are those with negative experiences – *and* a lot of the sites out there are not moderated, so people can post less than credible information.

    Sometimes, there are factors that will help you predict someone’s reaction to treatment. For example, we know that patients with extremely high antibody levels, extremely high thyroid hormone levels, and current smokers are at higher risk for worsening of eye disease after RAI. But unfortunately, doctors can’t predict every scenario. It’s one of the things that makes Graves’ so challenging.

    I will dig up & post the American Thyroid Association guidelines regarding quality of evidence. Where you find areas of conflicting recommendations, please discuss these with your own doctor, and rely on their expertise.

    Reluctance to do RAI comes primarily from concern over worsening of eye disease – as well as some patients wanting to try for remission before choosing a permanent option. But other patients do go straight to RAI or surgery, and are happy with that choice. Again, ultimately, this is up to you and your doctor. If a second opinion might give you some piece of mind, perhaps your primary can try and get you a referral to another endocrinologist (although sometimes wait times can be long for new patient appointments.)