[Anonymous]

#1040076

Are you still on beta bloackers? I was still on beta blockers after a couple weeks maybe even a month ( I dont remember now). But you should expect those tiring days and go ahead and do as little as you need to! Yes, Graves is hard on the body so the body needs to totally chill for awhile after RAI.

Wish my doc had told me that. I was on beta blockers but at that time in life I was obsessed with exercise. So I asked my regular doc if I could still work out through all this and he said yes. (This is 4 1/2 years ago now.) Well, my endo never said anything about it, so I figured after my 5 day waiting period after RAI (thank God for that amount of rest at least) where I had to be isolated because of the radiation, I went to the gym and worked out hard. Well, I did that on a Friday and the entire weekend I had an irregular heartbeat. My heart skipped a beat about every 10 beats. I called my endo and he says, Oh no, your body needs to stabilize before you can exercise (gee thanks for telling me after the fact), and had me wait 2 more weeks. When I started exercising then, I had no problems. However, 4 1/2 years later I now have an irregular heartbeat all the time, so I wonder if I had done any damage back then. I suppose I will never know for sure, because I have had Graves since my teens, and my heart first started skipping when I was in high school (though very infrequently). At that time it scared me silly! And when I was in junior high and a normal weight, I could not run one lap around during PE. I had to stop and walk cuz of shortness of breath. I remember being humiliated and not understanding why! And I had been an ice-skater in 4th and 5th grades, so it wasn’t like I was a sedentary, heavy teen!

I have had 2 EKGs done over the past 2 1/2 years, when I started getting the irregular heartbeat just about daily, and they both came out “normal.” I think it is interesting that BOTH times the nurses doing the EKGs were taken aback by the results–the first one told me the results were irregular and the doc would have to talk to me (very graven, like there were serious problems). But the doc said it was because I was so skinny and my results were just fine. The second time (I was now heavier so no excuse the nurse said he had never seen one jump all over the place and took two just in case. The doc told me that it was probably because the tape was falling off during the tests. That didn’t satisfy me because I didnt see the tape come off and I was fed up after all the years with no answers. So I told her my history and asked her how she knew it was normal even though the lines were very erratic. She showed me the EKG and said these are the 4 (or 5) lines we look at, and yours are just fine. However, this is the same doc that knowing I had grave’s disease gave me pink eye ointment when I came in about my eyes amonth later!

I have an apt with a new endo in March (havent seen one since my RAI, thanks to this site I now know it is important!) and I am going to tell him my whole heart history. I would really like to see a cardiologist for veriification and peace of mind if nothing else. Might make me feel better when at times my heart jumps all over the place! Good luck, Jen

[Anonymous]

#1129072

Hi everyone,

I had my second RAI pill yesterday. The first RAI was four months ago . the dose then was not enough to have any effect, my hormonlevels went even higher than ever !
This time the dose was a bit higher and I’m anxious to wait If my symptoms ( rapid pulse, nervousness, fatigue, headache etc) will improve this time. What should I expect in the coming weeks ? I’m still on a beta blocker and 150mg of PTU to start with in about four days to prevent going that extreme hyper I was last time I think.
I have a bloodtest sheduled in about 3 weeks to see what happens.

My endo told me to take lots of rest without stress and not to work at all for a while, (already 6 weeks now) and that I should be carefull with my body. Are there other warriors around who have not been able to work for a while ( I work fulltime as an architect in bulding design) and how soon after RAI did you began working fulltime again ?

Karen

[Anonymous]

#1129073

I got RAI about 6 months ago. Before getting the RAI I was taking 300mg of PTU per day to get my Thyroid levels down to a more reasonable level. I went of the PTU 3 days before RAI and stayed off it for 3 days after RAI. I started to get very hyper about 5 days after stopping PTU but it only took about a week to feel normal again (once back on the PTU). I stayed out of work for a week and a half. One week because the hospital told me to avoid contact with people for a week because of the radiation and the other 2 days because I was still feeling hyper. Other than that it was no problem.

I actually had most of my problems from the Prednisone they gave me to prevent TED. That started to give me some nasty side effects after about 3 weeks. I tapered as quickly as possible but it was a rough couple of weeks.

Hope this helps,
Joe

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