New w/Graves - RAI and effects questions
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| Sat, 02-10-2007 - 10:45am |
Hello, all! I am new to this board. I was diagnosed with Graves disease this past week, and have RAI scheduled for 2 weeks from now. My dose will be - 15mCi of I-131. I am not sure if that tells you anything, but it appears to me like a pretty low dose compared to some others I have read?
Anyway... I am told to be away from my children for 3 days - can't be in the same room. So... I am going to see about staying with my parents over that weekend (Fri, Sat, Sun). However.... Can my DH come to the procedure with me and drive me to my parents' house? Can we have lunch after the procedure, since we're not going to see each other for the next 3 days, or will I expose him to too much radiation?
Also, they did not mention anything to me about not sharing anything with anyone. Again, maybe it's because the dose is not too high? I was just told to not work for 3 days, and not be in the same room with my children/pets for those 3 days. Maybe they are saving the other "perks" for when I go in to have it done, or could it be that I am OK with being a normal adult afterwards?
I know that the damage to my thyroid will slow down my metabolism, and I am likely to gain weight. I am at a very healthy weight right now, and when the weather gets warmer I will return to walking 4 miles with a double stroller. Is it possible to maintain weight through excersize/healthy eating, or will I gain weight regardless? I am trying to be hopefull and think that I can make a difference by working out as much as I can, but then I am also afraid of being disappointed if none of my efforts help. I think it would probably be very depressing to me (I have a history of depression), so I think I would rather hear the truth now and have some time to accept it before I see my body change. So, what's the skinny on weight change?
Also, the RAI is recommended to me because I'm young (25) and we want to have more children soon, so the meds would be a bad idea, since I could relapse during pregnancy. I know not to TTC for 6 months after radiation. But would I be better off waiting longer? Or is there no chance of any radiation damage 6 months after RAI? I guess, I want to be on the safe side, so it is in my nature to think that if the Dr. said 6 months, I really should wait 8-12 months, so that there is no chance at all. Do you know anything to make a suggestion either way? Do they say 6 months to be on the safe side, or should I add my own "safe side buffer" to it?
Thank you for any information and advice you can give me.


Hi Dasha,
Welcome to our board.
You have asked some great questions.
Hi there, I had RAI about 9 months ago. The radiologist who administered the RAI said the danger from the radiation to a pregnancy is pretty minimal after only a few weeks, but recommended waiting 6 months to TTC just as a safety precaution.
The bigger issue, really, is getting my thyroid levels normal. My endocrinologist assured me that my thyroid levels would be stable after 6 months and at that point we could TTC. It's really bad to get pregnant with an out-of-whack thyroid, so it's important to get everything stabilized and normal before attempting to get pregnant. It's now 9 months after RAI and my levels are still all over the place - over the past year they've gone from being super hyper, to super-hypo and now back to hyper. Now, my doctor said I shouldn't expect to have stable levels until the SUMMER! This will be a whole year after the RAI.
I spent the first six months watching the clock - waiting for the magic six month mark. When this magic date came and went, my thyroid levels were still not normal, it was very depressing. This whole situation has been incredibly frustrating and disappointing. We were TTC for 1.5 years before I was diagnosed, and I'm sick of waiting around watching my friends and family all get pregnant and have children, while I'm waiting for my stupid thyroid to get better.
I kind of wish I had just gotten surgery to remove my thyroid as I've heard that it's much easier and quicker to get thyroid levels normalized after surgery than after RAI. I have a friend who was diagnosed with Grave's Disease, had surgery and was able to conceive after only three months!
I definitely don't want to dissuade you from having RAI - this of course is a decision that you should make with your endocrinologist. BUT, what I've learned from my experience is that the six month number is really the best case scenario. If you're very lucky, you're thyroid levels will be stable after six months, but in the worst case it could take over a year or more.
Oh yeah, as far as weight gain and all that. My thyroid levels plummeted almost immediately after the RAI and were very sub-normal for many months. Despite this, I only gained a few pounds (which I've since lost), and was able to continue to function fairly normally. I definitely was more tired and sluggish, but I think being in good shape before the diagnosis and continuing to exercise post-RAI really helped.
Best of luck to you! The good news about this whole thing is that it is a very treatable disease - just frustrating. If I wasn't TTC, it wouldn't be such a big deal.
Thank you, both, for the information. It is very encouraging to hear that not everyone struggles with weight. I have spoken to others about this issue, too, and it seems like the weight may be manageable. I hope that my levels are normal after 6 months, or we will have to weight until the following fall (2008) to TTC. We have two October babies (hence my screenname), and I do NOT want to be preggo another summer, LOL! So... if the levels don't stabilize before September '07, then we'll have to wait another yet. Sigh...
Good luck to you, mtngirl06, in getting an OK to TTC soon! I know how frustrating it is to see everyone TTC and have babies while you can't, so I can sympathize with that. I hope everything is back to normal for you soon, and you get to have your precious little one!
Welcome! I was in your shoes just over 5 years ago.
For the RAI - I was told to stay away from everybody for 2 days and then I had to stay at least arms length from my baby (she was 7-8 months old at the time) for 5 more days. They said that I especially had to keep her away from my neck and abdomen as the highest concentrations of the radiation would be in my thyroid and my bladder.
As for the weight gain - as long as you stay on top of your blood levels you should be ok. I also never had weight problems before the RAI and I don't now either. BUT I get my blood levels checked at least every 6 months just to be sure I am on the correct dosage. And if my dose changes after a blood draw I go back to get checked again in three months to be sure it is ok.
Another thing - I would recommend you get your blood levels checked about 6-8 weeks after the RAI expecially if you start feeling really sluggish and tired. And then once they put you on meds for hypo you should go back again in 4-6 weeks if you are still feeling tired and sluggish. It will likely take a while after the RAI for them to figure out exactly what dosage of meds you should be on so expect to feel like a pin cushion for a while (I did lol).
Well I hope that helps some. Feel free to email me privately if you'd like to chat more or if you reply here I will check back. My email is colinkatrina at hotmail dot com
Katrina
mom to Kristina (almost 6), Brant (3 1/2, T21), and Owen (9 months)
our family blog: www.mum2brakri.blogspot.com
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