Need some info on Graves treatment ...
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| Fri, 01-14-2005 - 11:56pm |
This is a post from Danielle that I'm reposting here so more of you guys might see it and answer! Cathy :)
Hi, I was just diagnosed with Graves disease this week and my doctor wants an answer by Monday on what type of treatment I want to have. She is really suggesting the radioactive iodine treatment. I was wondering what are the side effects from this and for you personally who has had it, would you do it again? Or would you just have the surgery?
My doctor thinks I have about a month before the symtoms get worse and even said I could contact an endocrinologist if I wanted. I am really confused right now. I thought I would just do the iodine treatment and be done, but now I am not sure.
Any help would be greatly appreciated! Thank you!! Danielle

Cathy, thank you for moving my post. I really appreciate everyone's help. I did call my doctor and told her that I wanted to see an endo and she was very supportive! I called and left a message with the scheduling dept of the office and hopefully they will get back with me Monday, if not, I will continue to call to get my appointment scheduled.
Thank you to everyone! Danielle
Hi !
Ok I'm probably going to say a few things some people won't like but it needs to be said.. I had Graves, if left untreated it CAN be fatal, once you get to the point of bulging eyes and falling out hair it's very hard to treat. From what you've said it sounds like you've caught it early like I did. Radioactive Iodine is NOT a drastic measure!!! All it does is shut down your thyroid so it doesn't produce hormones, same as would surgery which by the way is alot more drastic since it's invasive and requires you to be under anesthetic. What they do is put you on a thyroid suppressant (for me it was propylthiouricil, yup that spelling is wrong lol ) and a beta blocker (propranolol) for slowing down your heart rate. They wait for your hormones to get in the right area (took me almost a month so not that long at all) then you go into the hospital, swallow a pill (rai) wait a bit, get some blood taken, get thyroid hormone meds, go back a couple months later get more blood tests done, go back to the doctor to get the meds adjusted and do that basically until it starts to stablilize and about every year thereafter. It's very very simple, there are some side effects tho. Nothing too too drastic but there are some. I dunno how many people have gotten the effects I'll tell you about but I did so here goes lol
I broke out in a horrible rash on my calves that basically turned into open sores..sorta like mosquito bites that were picked, it lasted a couple of months and I got cream for it which helped and I wasn't left with any scars. I also had what felt like electric shocks bolting thru me from my chest outward, it did get pretty bad for a few days to the point i couldn't even walk to my grandmothers four houses down the street but it didn't even last a week. I also lost all sense of taste for about a month after taking the RAI, which made me not wanna eat but it didn't kill me lol
That is basically it, there's nothing really drastic about RAI, it's not invasive it doesn't hurt really, I mean talk to your endocrine (don't rely on your family doctor) and see what they say. But I do suggest you really look into RAI since it the easiest really.
Your family doctor was right, she probably wants you to hurry and make a decision because the longer you wait the harder it is to treat. Like everyone else said look around on the net and talk to people, specially your endocrine. And be sure to let us know what you decide :)
Jenni
I agree with you goddess.
A great big thank you to everyone who has responded to my questions. Jenni and April, thank you so much for going into detail about your experiences, it has helped! I printed off your responses to show my husband and my mom, yes, I am 34 years old and still go to my mom for advice! I didn't realize how big Graves disease is, I thought it was just cut that you clean out, put a band-aid on and forget about it. I am so scared of the bulging eyes, I think that is the biggest thing that is scaring me right now. How long does it take for that to happen? I just started noticing the systems back in late August, September, the biggest were fatigue and brittle nails. I have always had strong nails, everyone always thought they were fake! I was always so healthy before I was pregnant and gave birth!
Thank you to everyone again! Danielle
Try not to worry about the eyes too much! lol This coming from someone who checked her own daily. :-)
I've heard a lot of different things about the eyes. Often times that was one thing that brought people to the doc...one of the 1 st things they noticed, but didn't know what was causing it.