Graves' Disease Support Group

I had RAI treatment when i was 13... my options were - do nothing and keep taking meds, surgery which was really risky, or RAI. Personally i wanted to do nothing and keep taking meds but my mother was under the impression that i would die if i didn't get the RAI... and i have regreted it ever since. I have since gained weight ( i was always super skinny and active) i have no energy, and my hair is falling out non stop. I used to have a full head of hair and it was thick... now i have thin flat hair...and it falls out constantly in masses. I also tend to believe that now i have hypothyroidism because of it-is hindering my ability to start a family with my hubby. I find it much harder to keep my levels regulated now...where as before the treatment they were at a perfect level...it seems now that every time i get close to a good level the next time i go for blood work my TSH is way way off and i have to up my intake of synthroid. In my opinion what a pain. I am not saying that it might not help someone i am just saying what my experience with it was since i had it 10 years ago... also i had to be away from anyone for an entire day..(and my treatment was on valentines day no cool to a 13 year old girl who just knew she was in love) I wish i could take back having it done...

Oh and not too mention the sensativity to cold... i stay cold non stop and now i have no immunue system...(well it is really really weak) every sinus infection or cold i get turns into pnemonia if i don't start stong antibiotics in 2 days (ya know the super strong ones that make you sick for days on end) i have also now found out that i suffer Raynaud's Phenomenon (where the cappliaries in my fingers and toes dont work correctly and they burst upon my fingers getting cold)...which causes the skin to peel off constantly exposing raw skin... i have to wear gloves all the time because of how sensative and pain ful my fingers are... they stay raw and bright red... and my doctor tends to think my hypothyroidism is making it a more severe case than normal... he says if it gets worse you can actually lose your fingers..i have had to learn to type with the backs of my fingers.. talk about a pain since my job requires typing all day long...

I was rushed to make a decision to have RAI done and THank God I didnt because at the time my Endocrinologist didnt know that I had the eye disease too. Had I gotten the RAI treatment my eyes could be so much worse than they are now. Also, I'm not crazy about radioactive anything going into my body. Just some personal thoughts.... Hope this helps.

I am currrently waiting on the ok from my insurance to get this done. I was fine with the decision till I did some reading now i'm scared. I am SO tired of feeling crappy, tired of the hair falling out, the shakes, the panic attacks, the palpatation, the utter lack of energy that I just want it taken care of. I had started out on an extremely high dose of tapazole and it helped (the burning feet side effect was difficult to deal with though) I started to feel better once on it. Then he lowered my dose and then scheduled the uptake/scan. I had to stop the medicine for 2 weeks prior to the test. Thats all it took for me to feel like crap again. I am currently off meds awaiting this RAI. I feel horrid. I really wanted to get it done, now i'm nervous. I don't want to feel worse for having it or devlope cancer cause of it. UGH! I don't know what to do.

Ghost, hey it seems your symptoms are so severe it would be worth the RAI and deal with HYPO thyroidism. At least that will be better controlled with synthroid IT SEEMS compared to your current symptoms. The biggest thing that I know of is that if you have any eye problems related to the thyroid is can make them worse. I for example have bulging eyes so I would want to stay away from it if at all possible just because my eyes are already quite bulged according to my ENDO, "not much room to bulge anymore" which is scary sounding. But if your eyes are ok and you can't tolerate the symptoms of the disease or meds, then it seems like it's prolly the best thing. Good luck in your decisions. :) *hug*

I was diagnosed with Grave's in early 2001 after having 2 miscarriages. I was put on meds until I could do RAI. I had RAI in May 2001. I did not have any problems with it but am now hypothyroid. I am on 50 mcg of Levoxyl daily. I also went on to have a healty baby girl 8/02.

Why aren't doctors willing to admit that RAI increases drastically the chances of TED? Some foreign countries have already seen the problem and recommend against RAI.
Why do we have to be behind when it comes to medicines and treatment with our FDA slowing everything down.

Bumping this because of a recent question from a member
Dr O.

I had RAI almost 5 years ago now (it will be 5 years in a little more then a week!!) and let me tell you (esp. Ghost) I dont regret it one bit! The one bad thing about the internet is that you can read all these bad things that could happen to you and scare you to death - fortunatly I didn't read any of that stuff until almost 2 years after RAI and already knew that I was fine.

Angel212 have you seen your endo? It sounds like your levels aren't right.....everything you are describing happens to me when I am kept to hypo - they always have to keep me on the very hyper end of the scale.

For me RAI did not make my TED worse and I had it before hand in both eyes. Now it only shows in my right eye when my levels are off - my own little indicator. Yes there have been times I have felt horrible because for almost two years I couldn't see my favorite endo and bounced around to a few and no one could get my dose right - I am super sensitive to the smallest changes in my numbers. But now they have been great since July!! My eye is 90% of the time normal now - I have had a sinus infection with tons of pressure behind the eyes from it so sometimes it bothers me.

I truly believe I had to have RAI - I was on the verge of having a heart attack at 17 because my heart was racing for 2 days straight like I had just run a marathon and I was having chest pains. Yes I have gained weight - lost it all once for 6 months and then was stupid and let my GP start changing my meds and that set it all off again - I have since re lost almost 15 pounds and hope to loose the last 10. I honestly believe based on how hard it has been at times for me to find the right level that if I had still had a thyroid it would have been even harder. And maybe I just got lucky and my guy really knew what he was doing when he gave me RAI....but I think the number of people who have had it in the last few years have had much more success with it.

Angel I would really suggest getting your levels checked - if you are hypo that will also make it hard to get pregnant.

I do hope that one day we will find a better way to treat this without having to result to removing the thyroid in such drastic ways - it seems like it shouldnt have to be our last resort. Because making that decision is so scary!!

I was fortunate in that after my mom talking to family members in the medical proffessor, our old GP that had seen me since I was 5 and a few endos that she pretty much made the decision for me and I wasn't capable to decide at that time. Knowing how I react to various medications I dont think any of the PTUs would have worked for me or I would have had horrible side effects and I sing so there was no way I could do surgery!

I just wish the medical profession knew more about this then they do so that we wouldn't have to spend hours online researching things and we could just trust them when they tell us we need to do something.

And just so everyone knows I know RAI is not for everyone and I do believe it should be a last resort not a first option except for in extreme circumstances such as mine was.

While I was making my decission I felt like I was between a rock and a hard place. I still feel that way to some degree. I wanted someone in the medical community to tell me what my chances were of my eyes getting worse if I did the RAI. Since I have a moderate case of GO and no one would answere that question, I chose not to. Ive read so many times that RAI can make your eyes worse, or if you dont have GO, RAI could set it off. The risks seemed to be the same whether you chose to or not. The question then became, Do I want to keep my thyroid? Why then would you destroy a body part if the outcome is the same. I felt that staying on PTU and praying to go into remission was the best of 2 evils. Sooo... Dr Orange...If you have a patient with GO would you recommend they have RAI? And if so, why?