About

About this site

I’m starting this blog because I want a place to keep track of and share the references I find about Graves’ Disease (GD). On this site, I summarize and comment on a variety of peer-reviewed GD articles. If possible, I provide a link to download the original article.

I am NOT a doctor. I am NOT a medical professional. I am just someone with library access and a science background. My “summaries” are my own interpretations and responses to the original articles, not the final word. Go read the original article to see what you think – there’s a link at the bottom of every article.

Please consult your doctor to discuss treatment options and ask questions.

About me

If you want to know more about me, you can visit my personal blog and other sites I maintain at pandapoop.net.  I’m a grad student in the physiological ecology of wildlife. Currently, I am studying the nutritional physiology of a lichen-eating monkey in the Himalayas.

I’ve been diagnosed with GD since early 2009 and like to keep informed on what my treatment choices are. This site is the result of me being obsessive about finding information to make a good decision for myself. If it helps anyone make their own decisions, I’ll tell you about the history of my GD.

For about 5 years, I kept feeling worse and worse.  I had severe trouble sleeping, a pounding heart that people sitting on a couch next to me could feel, I had gained weight because I was always hungry (ironic, I know).  I went to doctors for years who dismissed me as a typical “hysterical” female.  I got given advice to relax, get exercise, learn to meditate, try yoga.  In 2008, I broke my hand opening a door, which seemed odd even to me.  The doctor asked me if I had any thyroid problems as that can make your bones brittle.  I told him no.  I felt worse and worse.  After one doctor refused to believe my sleeplessness, I kept a sleep diary which showed that for six months, I slept no more than two hours per night.  I was a wreck.  Finally, I found a doctor who took one look at me, noticed a tremor that I hadn’t even noticed, and said I appeared to be a textbook case of Graves’.  Lab tests confirmed this.

Initially, I had no detectable TSH, an iodine uptake of 94%, no goiter, no anti-thyroid antibodies, and no eye involvement.  I’ve never had any Graves’ associated eye problems.  I was initially prescribed methimazole, an anti-thyroid drug, and atenalol, a β-blocker.  I was soon able to wean off the atenolol and got the methimazole down to 5-10 mg/day over approximately 3 months.  My doctors have pushed hard for me to get treated with radioactive iodine or surgery, but I don’t like the idea of something so toxic and drastic, and that would elevate my risk of eye problems as well.  I feel the drugs are working, I haven’t had a bad reaction after two years of treatment, and I feel fine.  I don’t have an easy way to isolate myself from others for the radioactive iodine treatment, and I’ve had terrible reactions to anesthesia before, so I’m not eager to have surgery.  My philosophy at the moment is, if it ain’t broke, don’t fix it, so I’m staying on the drugs.

-update 2014 – My GD has returned, although not as bad as it was initially.  After ~1 year on methimazole again (5 mg/day), my doctor thinks I may be in remission again, so I’m trying a no-drug period for a few months to see how I’m doing.  My personal feeling is I’d rather stay on a super-low dose of MMI (say, maybe 2.5 mg 3x per week) indefinitely rather than go on and off the drugs, but there isn’t a lot of support for this from either my doctor or the literature (nobody studies super-low doses of MMI, unfortunately).  Heck, they don’t even MAKE 2.5 mg tablets – you have to break a 5 mg one in half.–

Just because MMI has worked well for me does not mean that drugs are the right option for YOU.  Please find a good endocrinologist who will listen to your worries and can explain how treatments will affect YOU.  I just offer my story as an example of the path I have chosen.  Feel free to contact me if you have any questions.

Comments, questions or suggestions for papers to post are very welcome! If you want a response, please include your email address. I won't spam you, I promise.

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