[Anonymous]

#1020058

Fellow Graves Patients:

I want to share my experience both with my Graves Disease and the Radioactive Ablation treatment that I had just over a month ago. I hope that it can help someone out there who might be like me.

I was diagnosed with Graves in early 2006 after my third child was born. I decided to try anti-thyroid hormone treatment b/c I did not want to have the radioactive restrictions as the mother of three small children, and I hoped that maybe I could achieve “remission”. After a year on PTU (I was allergic to Tapazol), I was slowly weaned off of the anti-thyroid hormone. My blood levels remained normal for 6 months, and then I went hyperthyroid again. At my doctor’s suggestion, I went directly into the radiactive ablation treatment (after two weeks on the restricted iodine diet). My blood level of T4 free going into the ablation was 3.0 and my gland was about twice as big as considered “normal”. My doctor told me that I was “in a good place” for having the ablation procedure—she was dead wrong. After the uptake tests, I was dosed at 42.3 mcI of I-131 b/c of the size of my gland and my “slower than normal” uptake for a Graves patient. Everything appeared fine for about 4 days and then I started to go into a “mild thyroid storm”. I am now in the 5th week of the storm and am starting to come down, but I have been a very sick person. I experienced 7 days of truly horrible symptoms that ranged from fever, entire body shakes, severe diarrhea, and heartrate of 120-150 beats per minute. I could not sleep, was completely heat intolerant, and my vision was poor. While those 7 days were definitely my worst days (400mg of beta-blockers kept my heartrate about 110), at day 34 I am still significantly hyperthyroid and taking 200mg of beta-blockers to keep my heartrate around 100. My brain still isn’t working right (I am not processing things that I should be and struggle to keep my focus)and my hair is now starting to fall out. I doctor at the University of Nebraska Medical center in Omaha, and both my endocrinologist and the nuclear medicine doctor that dosed me say that my case is very unusual, but I want people to know what happened so that they can be properly informed going into the procedure. Everything that I read and was told by my doctors indicated that the procedure was very safe and easy; and my experience was that it was NOT.

I am hopeful that the ablation treatment will be successful once my gland “recovers” from the storm. The goal was to destroy the gland, I hope that eventually happens. At this point, my gland is certainly “insulted” (to borrow the nuclear medicine doctor’s words)–It will take time to see if it dies off.

To anyone out there that is thinking about the ablation procedure–ask your doctor about thyroid storm complications and make sure that they properly prepare you for the procedure. I slipped through the cracks and my doctor underestimated the strength of my thyroid gland and the amount of hormone that was stored in it. I should have done another 6-8 months of PTU to “drain” my gland out before the procedure.

I am curious–has anyone else experienced thyroid storm following an ablation procedure? If so, what happened? My doctor has been generally unwilling to give me a time-frame for the gland destruction. When I pressed the issue, they told me roughly 6 weeks to recover from the storm, but up to 6-12 months to determine whether the procedure was successful at destroying my gland.

Anne Burkholder

[Author]

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