[wilson68944]

#1060565

Hey guys!!

I hope you don’t mind if I vent for a second. I got the news today that my RAI has officially failed and I’m furious with my doctors and in general. I hope you don’t find me unreasonable. Maybe if I explain it will help you better understand. I have a very severe case of Graves’. Severe severe. I’ve been on 40-60mg of Methimazole daily since 2009. My doctors recommended RAI for the 20th time in June of 2014 and I finaly relented. When I got to the nuclear medicine department I found the nuclear medicine doctor and my endocrinologist agreed on 10.5 millicuries. I at first refused to take the pill while they had the lead case in front of my because I protested the dose was too small for someone in my condition and I felt it wouldn’t work. They told me that someone with an uptake of 80% only needs a little because their thyroid is so hungry for iodine. I felt this was pretty lame reasoning but I relented. I stayed on my Methimazole 40mg for months after and in August my
TSH hit 80.23. I felt hopeful it worked until the next month when after being pulled off Methimazole I dropped to a TSH of 7. I knew the writing was on the wall at that point but my doctors refused to admit defeat. The following month I dropped to a TSH of 0.70 and I demanded to be put back on Methimazole but they kept playing games and said I was still in normal range technically. I felt hyper, couldn’t sleep and I told them it’s obvious I’m heading back to hyper very quick and I’d like to get a jump start on my Methimazole since it takes weeks to start working. Well, they insisted I was euthyroid and I gave up the fight. So, today I went in and got my result of a TSH 0.009 (0.40-4.50) and a FT4 of 2.64 (0.80-1..

I don’t understand why I had to wait until I crashed again to be put back on medicine or given RAI again. My doctors failed me twice and now I sit still on no medicine deciding if I trust them to succeed a second time. I think I’m going to stay on Methimazole indefinitely. I really don’t care if they don’t like that. It’s taken everything I have no to lose my cool with them. I guess I could “vent” and blame it on the Graves’ lol. I should add I’ve done the yo-yo with them or because of them so many times I’ve had it. I can tell which way my body is heading and I feel like it’s not rocket science if the numbers consistently drop every month eventually you will hit hyperthyroid. Why deny the obvious? I don’t know. Thanks guys.

[Kimberly]

#1183370

Hello – I’m sorry to hear that you had to go through this! There are a couple of methods of calculating the dose of RAI, and one is based on the uptake %, so it looks like that’s the approach that your doctor had used.

One concern with higher doses of methimazole is that you have a higher risk of serious side effects. These side effects are more common when you first start taking the meds or if you re-start them after you have been off for a period of months. But after what you’ve just been through, that should certainly be your choice to make. Repeating the RAI or having surgery would be other options.

You might be interested in reading this thread from AZGravesGuy if you haven’t already – he went through a similar rollercoaster ride over a number of years and documented his experiences here:

http://gdatf.org/forum/topic/42783/

You do want to have confidence in your medical team, so if you are interested in consulting with a new doc, the “Looking for a Doctor” thread in the announcements section of the forum has a couple of search engines where you can find an endocrinologist near you.

Wishing you all the best as you decide on next steps!

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