RAI this week

[Gravehater]

Hey everyone... Ive been spying on this site for roughly a month now, and I finally decided to register, though it isnt me that has graves- Just very concerned. My boyfriend is getting RAI this week for graves disease. He was diagnosed Hyperthyroid a few months ago, maybe May timeframe and was put on methamazole (SP?). It was a relatively low dose of about 15mg, which worked for him as far as the symptoms, but due to either the graves or the meds he started to lose his hair.

Funny how it took him losing his hair to go to an endo. But Im glad he did. His previous physician dismissed him with the meds without so much as a breakdown of what hyperthyroidism really is and what it can do to you. Fortunatley, he has a wonderful gf like me that can worry enough for the both of us and I researched it. ALOT. His symptoms were so consistent with graves. Once he got to the Endo, whom was wonderful, he informed him that RAI would be the most effective treatment, so he scheduled the uptake tests. Which proved he was in fact a graves patient. I think his uptake was nearly 80% or something. Im not sure if thats good bad or normal. Regardless, he is only on beta blockers now until the treatment.

His eyes have not begun to protrude at all, but he did have some irritation (The grittyness everyone seems to get) and some puffyness. But no protrusion. And an Ophthomologist confirmed, no protrusion. He was put on prednisone for the irriration but its only for 7-10 days. The irritation stopped almost immediatley upon use.

I guess my fears are this:

Will the RAI worsen the eye symptoms? Should he stay on the steroids until he is Hypo? I do keep reading that TED (if thats what he has) is seperate from the disease. But maybe we caught it early enough that exopthalmos wont appear?

The other thing I am TERRIFIED of (high anxiety much...) is Thyroid Storm after the RAI. He seems to have Mild Graves from what I have been reading, but Im still scared of the "dumping". When do I take him to a hopsital?? I mean I know he will probably be feeling like CRAP for a few weeks - months and in some peoples cases ive read maybe a year, but I just dont want to dismiss symptoms because I have a tendency to overreact. Maybe My question is - is thyroid storm rare? If hes on his beta blockers, would that help control that from happening?

Also, He doesnt appear to have any goiters or nodules that the doctor can feel, and I assume they would have been presented in the uptake, does that make him unlikely for cancer? Im all for the RAI, because it seems to be so safe, the only thing I fear is that - how will we really ever know? Will it matter if we did or didnt know if the thyroid is being destroyed?

Ive read so many conflicting opinions and articles and even the doctors themselves are divided. I feel really helpless in all of this. I feel like I cant help him find answers and im taking shots in the dark with the information ive been finding. I always end up coming back to this site because everyone here actually shares their experiences and how they FELT, not a medical readout. Im really tense because I keep reassuring him that his eyes will be fine, that this kind of thing settles down and we caught it early and all that, but I dont know if im lying through my teeth or not. HELP! :sad0049:

I dont have his levels currently, but im going to start posting them as soon as I get them. Anyone care to make sense of my incoherent line of questions!!??

It would mean alot to me. Thanks.

[Lovlkn]

My opinion.

If he has any eye involvement than he should not have RAI.

While it is believed that TED is a separate disease than Graves and will run it's own course I know of several people whose eyes got severely worse once they had RAI.

Thyroid removal surgery is never refused by insurance companies - per my thyroid surgeon.

If it were me I would choose surgery if there were any eye involvement.

[Gravehater]

When you say severely worse - do you mean the irritation that ran its course or disfiguration of the eyes?

[Lovlkn]

When you say severely worse - do you mean the irritation that ran its course or disfiguration of the eyes?

Yes to both. What did his eye doctor say about having RAI? I know some will insist that you do not have RAI with eye involvement and some just don't say anything.

[Gravehater]

His doctor has not said anything about it. In fact, most all communication is through his (pshyco) nurse. He really seemed to like the doctor though, and drove a really good distance to see him.

THey put him on steroids and the irritation went away almost instantly. So I think they are going to go ahead w the RAI and keep him on steroids. One risk for another... Fun.

But he is really scared of eye protrusion. I think he can handle the irritation if it came down to a running its course thing, but the exopthalmos... Im not sure if he could really handle it emotionally.

[Andros]

His doctor has not said anything about it. In fact, most all communication is through his (pshyco) nurse. He really seemed to like the doctor though, and drove a really good distance to see him.

THey put him on steroids and the irritation went away almost instantly. So I think they are going to go ahead w the RAI and keep him on steroids. One risk for another... Fun.

But he is really scared of eye protrusion. I think he can handle the irritation if it came down to a running its course thing, but the exopthalmos... Im not sure if he could really handle it emotionally.

I understand about the eyes as mine were completely out of the orbits. Corneas were bulged and touching the lens of my glasses and went temporarily blind in the left eye.

He has every good reason to be fearful. However, I believe in crossing bridges when I come to them and not before. Both of you try your best to not worry.

I found counseling very helpful. It helped remove the fear and uncertainty of a changing appearance, changing body and changing life.

Grave's does a number on the psyche big time.

[Gravehater]

Did you have a really severe case? Ive read alot that says its rare, or that the graves was constantly misdiagnosed, so symptoms were getting worse for alot of people, such as the eyes until it was too late to really "fix" or "prevent". Im so sorry that you had to go through that. Have you tried surgery or the radiation? Or were you one that had the problem correct on its own?

[Andros]

Did you have a really severe case? Ive read alot that says its rare, or that the graves was constantly misdiagnosed, so symptoms were getting worse for alot of people, such as the eyes until it was too late to really "fix" or "prevent". Im so sorry that you had to go through that. Have you tried surgery or the radiation? Or were you one that had the problem correct on its own?

I had RAI but I can assure you that it made little difference to my eyes at the time as they were already THAT bad. I was undiagnosed for over 20 years.

Once I got on track after the RAI, I had radiation to the eyes 3 times a week for 6 weeks concurrent with prednisone and then I had to wait 18 months for the eyes to calm down and improve as much as they were going to and then I had orbital decompression to both eyes; 8 hour surgery. Then Meuhlerectomy of both eyelids to lower them so I could close my eye lids completely.

My eyesight was returned to the left eye (optic nerve was impinged and stretched to capacity) but I do have very limited vision. No peripheral vision and I have strabisimus from muscle damage due to interoccular swelling.

But, you see? I was constantly being disregarded not only by regular doctors but eye doctors as well. Had I had early medical intervention, none of this would have happened.


Your boyfriend is in a much better place w/ this and it is unlikely anything to this extent will happen to him.

[Gravehater]

TWENTY YEARS ++++??? HOW AWFUL. I have to say that since Ive become a little detective on graves, hashi etc, I have been stunned at how hard it must be emotionally. I have so much respect for the community. I cant imagine having gone for so long untreated with the obvious symptoms that you had developed. And the doctors kept on ignoring it. Sometimes I think I am more qualified to be a doctor. Though there are some great doctors out there.

I also thank you for your opinion on surgery as an option. I like that all the posts ive read you have remained consistent in your opinions. It really helps people like me who are utterly confused. I think one day, if this didnt work, that will be THE option over a 2nd dose. He took the pill a few moments ago and the doctor informed him he has very little to worry about with the eyes, that he didnt appear to have any goiter etc, but that he was VERY overactive. Which I imagine means a large dose of superman killer. glow

He only told us to maintain distance for 48 hours??? That even "intimate" contact was okay after that. Which contradicts everything I have EVER read. I think sometimes these doctors get like us office folk do - like they are on auto pilot and nothing is a huge deal to them. I think ill stick to the 5 days. Im sleeping on the floor lol.

Once again, I am so sorry for your experience with your eyes, but glad you have been able to restore partial vision. Ill keep everyone updated as we go.

[Andros]

TWENTY YEARS ++++??? HOW AWFUL. I have to say that since Ive become a little detective on graves, hashi etc, I have been stunned at how hard it must be emotionally. I have so much respect for the community. I cant imagine having gone for so long untreated with the obvious symptoms that you had developed. And the doctors kept on ignoring it. Sometimes I think I am more qualified to be a doctor. Though there are some great doctors out there.

I also thank you for your opinion on surgery as an option. I like that all the posts ive read you have remained consistent in your opinions. It really helps people like me who are utterly confused. I think one day, if this didnt work, that will be THE option over a 2nd dose. He took the pill a few moments ago and the doctor informed him he has very little to worry about with the eyes, that he didnt appear to have any goiter etc, but that he was VERY overactive. Which I imagine means a large dose of superman killer. glow

He only told us to maintain distance for 48 hours??? That even "intimate" contact was okay after that. Which contradicts everything I have EVER read. I think sometimes these doctors get like us office folk do - like they are on auto pilot and nothing is a huge deal to them. I think ill stick to the 5 days. Im sleeping on the floor lol.

Once again, I am so sorry for your experience with your eyes, but glad you have been able to restore partial vision. Ill keep everyone updated as we go.

Aaaaaaaaaaw; you are such a sweet and thoughtful person. Thank you for caring! The one good outcome of all of this re me is that I am out there helping others best I can. I love doing it; it keeps my cup full.

It is an emotional disease but it's not stand alone by any stretch of the imagination. Our health is precious.

I agree w/you on the 5 days; that would include your pets also if you have any. Double flush the latrine, don't share dishes, silverware or glasses. No huggy huggies. Hee, hee!!

You may wish to read this and get further antibodies' tests run.

http://jcem.endojournals.org/cgi/content/abstract/jc.2009-2470v1