Is anyone Happy about RAI?

[debb03]

When a person has graves disease and hyperthyroidism and is losing weight is the best thing RAI? I had no other choice for my son. Is anyone glad they had RAI? All I read are horror stories, is there an upside to this? I'm afraid for him, and if we didn't have this done he could have died with his thyroid so out of control. I'd like to see some good things about RAI. If there is anyone out there who had positive effects from rai please contact me. Thanks..

[NastyHashi]

Hi Debb,

I've been running these boards for a long time and have read every post that comes through here....People don't post when they get well casue there's nothing to talk about....they just go about their life as usual. You only hear horror stories about RAI cause its a select few who have had problems.

Life with Graves is no fun.

Your son is losing weight still because his thyroid is dying. Once its dead, the weight loss will stop. Imagine the thyroid as a sponge full of thyroid hormone. All that hormone is dying off fast cause of the RAI sending it into the bloodstream, increasing his metabolism....very common for a few weeks after RAI. Once enough cells have died off, there will be no thyorid left to keep his metabolism so high and he will turn hypo. Once its gone, its gone.

At that time, he will be put on Synthroid probably and after a few adjustments, he will be perfectly fine. He might feel as if everything is slow causae he was so used to being ramped up for so long, hurting his body but now that he will be at a "normal" pace, he will get used to it and realize how wonderful life is again.

Just watch for signs of hypo. If he starts slurring his speech, dizzy, puffy, tired, cold, starts finally gaining some weight, etc, its time to get him to the doc for blood work and thyroid meds. You dont want to let him go to hypo...some docs dont screen frequently enough. For $40 you can go to ebiosafe.com and order a TSH test...its very simple and accurate. I use them all the time when the docs dont send me frequently enough. His TSH right now is probably like 0.00 or 0.5 or something real low. If you see it creeping up into the 4's or 5's, he's starting to turn hypo. My last test was 19.8 so I was really hypo. normal is around .85 - 1.9 or so. If he's within that range, he is nearly perfect.

Good luck and hang tight. your son will be fine once that thyroid id gone for good. Plus, he's young and should recuperate fast. He'll be fine I'm sure.

[GD Women]

I have no regrets doing RAI approx 10 1/2 years ago. It saved my life too by stopping my uncontrollable weight loss. Yes, there are a lot of horror stories but which most are false, out of ignorance from people not knowing what they are talking about or due to others personal agendas. What most RAIers blame on RAI is more likely due to their thyroid health condition or other health's conditions, rather than RAI. RAI for thyroid has been used for over 60 years and there has been a lot of trial test done among RAIers that show there is no adverse affects from it. So whatever might pop up in your sons future, health wise (if any), would not be from the RAI treatment but rather from other health issues he would have gotton anyway, regardless of RAI.

I don't know if the question should be "positive effect from RAI", but rather it was the best treatment for us based on our thyroid condition and life style. If we are autoimmune thyroid, we are still autoimmune thyroid and with that in itself is a non-curable illness with symptoms of its own. There is no cure for the auto/immune system. RAI or the other two treatment options is to stop the symptoms of the hyperthyroid side, which in our case was the weight loss. I made the best choice for me.

I think you are worrying needlessly. Your son is going to be ok once he gets on meds., so be positive for him.

[debb03]

Thank You so much! It's reassuring to hear from someone who's "been there". He's my son and I worry even if it's needlessly..
Thanks again, Debbie

[GD Women]

I meant not to worry needlessly about the RAI. Worry about your son all you want, its your right as a mother. Good luck to your son, hope he is more positive.

[TheYam]

Hi Debb,
I was diagnosed with Graves Disease this past September, and when I was researching RAI, I felt the same way you do. It seemed like all I could find were scary stories and bad experiences! Despite that, I researched all my options and decided RAI was still the best decision for me. I had RAI done at the beginning of December, and my experience has been overall positive! There have been a couple of minor side effects, but nothing terrible. I definitely don't regret my decision to have RAI.
Hope that helps!
:)
Yam

[sharris123]

Hi there, I am very happy I had RAI 11/30/07 will be in my memory forever! a day that changed my life, and I am on the road to recovery. I am now on Levothyroxine, about to go back to doc so they can adjust my meds for the first time and I cant wait! I started gaining weight about 1 month after RAI, ave. 1 lb a day! :o) that will become stable after they get my meds under control. I was very hypo! (I got smart and kept a heating pad handy! I would recommend that.) freezing all the time! I dont regret RAI one bit! He will have ups and downs. the best thing to do is to just really be there and supportive :o) sometimes all anyone needs is to just have someone listen to them and hear them. I know sometimes there wont be anything you can do to help, but being there will make all the difference! My own experience, the way I feel is I am in my own private hell and it's hard for me to describe exactly how I feel to someone who doesn't have Graves Disease..... Its really hard to deal with some times... well, he will get better, hang in there :o):p

[sparker]

I'm now 12 weeks after RAI and still doing well. I feel like I am myself again after 5 years of being missing.

[debb03]

Thank You all who have gotten back to me.. It is now 6 weeks after my son had the RAI treatment and he is finally gaining some weight. We had his first blood testing done a week ago and his t4 is down to 5.0 and tsh is up so all looks well for now. He is starting to feel better and is acting more like a 17 year old should! I am finally feeling better about our decision. This is a wonderful board and I am so glad to have found it!! Thanks again to all....

[pamperedblonde]

I am new here but just wanted to say that I had RAI done 2 1/2 weeks ago, ido still have some heart racing but take Propranolol only. Icant take ATD's as I am allergic to both offered here in US. Has anyone gone through this and only took a Beta Blocker afterwards? How did you come out I just wonder if the Heart racing will go away? and how will I know when I have switched over from Hyper to Hypo? Other then that its been a real positive experience.

[happysunshine]

At first I was like a rollercoster and thinking this is not working and thinking why do I still feel like crap. It's been about 2 months now and I am starting to feel better. I still have some anxiety though but working on that..

[Andros]

When a person has graves disease and hyperthyroidism and is losing weight is the best thing RAI? I had no other choice for my son. Is anyone glad they had RAI? All I read are horror stories, is there an upside to this? I'm afraid for him, and if we didn't have this done he could have died with his thyroid so out of control. I'd like to see some good things about RAI. If there is anyone out there who had positive effects from rai please contact me. Thanks..

Hi there, Deb! How old is your son?

I sure don't have any regrets. At the time, I did not care how they killed it or got it out. I just wanted it done.

When did your son have RAI and how is he doing?

[Anissa]

I am thinking about doing RAI in a few weeks and am honestly very terrified to do it. I am glad to have read so many stories on here and see what other people have gone through. I have been on PTU for 10 months now. My TSH in Dec 2008 was .047 today it is 2.25. My biggest concern with doing the RAI is that my TSH will drop drastically. This is not listed as one of the biggest risks but I am still concerned. Did anyone experience this?
Many thanks.....

[soladeo]

I just had RAI due to thyroid cancer, not Graves. From what I understand, the amounts given are different, but my doc was very positive about side effects. Two things he noted for the future (this is coming from someone with cancer, not Graves, remember that): dry eyes and dental problems from dry mouth can be an issue. He recommended seeing an opthomologist (sp) instead of an optometrist, and to let my dentist know I had RAI, and be super viligant with dental hygiene.
@pamperedblonde: I was very hyper when my thyroid taken out. For me, the hyper symptoms went away rather quickly, and I was taken off my beta-blocker b/c my blood pressure plummeted, but I've heard with RAI the symptoms can get worse before they get better. I wasn't sure how to tell I was hypo instead of hyper, b/c as far as I knew, I've never been hypo. It wouldn't hurt to look at a list of symptoms, but be aware everyone is different, and some hypo symptoms are the same as hyper. While most people lose weight when hyper, I gained, and it's been vice versa now that I'm hypo. If you were tired when hyper, you may find yourself feeling better for a while, and then getting tired again, but this time it may be easier to sleep. Also, your body is going through quite a traumatic experience, so keep that in mind.
GL to both of you :)