# RAI - Eye Irritation - Endless Worry



## Gravehater (Aug 19, 2010)

Hey everyone... Ive been spying on this site for roughly a month now, and I finally decided to register. 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.


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## madriiz (Jul 10, 2010)

Hello Gravehater...I know exactly how you feel. I myself was diagnosed with Graves 5yrs ago and just had RAI 6wks ago. I had the exact same questions as you did. I was terrified of thyroid storm. I spoke to my nuclear medicine Dr. and she reassured me that it is very very rare. She has been doing it for 20+yrs and said that she only had one case and it happened because that patient had developed an enlarged heart. Which is even rarer.

My experience was really nothing out of the ordinary. It was really a breeze. I think its because we fear the unkown that we work ourselves up about it. I know I did!!!

I did have the "dumping" and it passed really fast. I would still get it once in a while but every time was lesser than the one before. I am still on beta blockers just a lower dosage now. During RAI I was on 3 20mg tablets 3x a day and now im on 1 20mg table 3x a day.

It's just a lot of time and patience. I go for more labs in 2 weeks to see if I am hypo yet. Everything will be ok you'll see. You are not over reacting you are just being human  I was just the same and am happier than ever that I did it. No regrets!

Good luck to you and your boyfriend sending good vibes!! keep us posted!!! :hugs:


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## Gravehater (Aug 19, 2010)

Thank you so much. You have no idea how much this board has really helped me coping with the unknown and kind of dealing with something thats beyond his control. Hes having a hard time for sure, especially worrying about his eyes.

Did you have any issues with your eyes after treatment?

Thanks!


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## Andros (Aug 26, 2009)

Gravehater said:


> Hey everyone... Ive been spying on this site for roughly a month now, and I finally decided to register. 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.
> 
> ...


Hi and welcome to the board. The "truth" is that any trauma can trigger the eyes. That would include surgery, RAI and even being put on antithyroid meds. 
Some say taking a Pred Pak right before and during the RAI helps stave any reaction to the eyes off. The thing is, there are no guarantees here w/ that and I do advise your boyfriend to see a Board Certified Ophthalmologist (which he has done) "before" the RAI so that a "baseline" evaluation can be established. If he stays on top of this, any problem should be minimal for the ophthalmologist will know what to do.

And you are doing the right thing by reassuring him as anxiety can trigger the eyes also. You are a swell person to stand by him like this.

The one single thing in favor of surgery though is to make sure he does not have cancer as the gland will be sent to pathology. Hyperthyroid and cancer are often found to be bedfellows. I don't know if there were any comments on the RAIU by the radiologist! Where there?

Please keep us informed on any and all progress.


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## Gravehater (Aug 19, 2010)

Im really glad you said that about trauma, because he had NO problems until he was suddenly taken off the meds (methmazole) to prepare for the uptake and the eventual RAI (Today at 11 CST). Hes seen the opthamologist, and is on the 7 days steroids. He has 4 days left, which will probably cover him through his "kryptonyte" as I like to call it, stage. I know there are alot of side effects from the steroids if he needs them long term, but i think if we get him off them and on them maybe we can stave this off. I think all this just kind of hit him at once. He thinks hes been hyper for a few years now, progressivley. I just wish the initial GP had referred him sooner.

Cancer is another worry I have, but the uptake scan didnt reveal any nodules or anything that hes been made aware of. They say theres nothing to really biopsy. I, myself, have been through some ovarian issues where I didnt have tumors or anything considered serious at the time, until one day it WAS serious. I would like to prevent any kind of experience like that for him. Hes only 27, so if I can push him to do something NOW instead of in 10 years, I want to. So, ultimatley, ill make his life more hell than the thyroid does until he gets a biopsy. But one stone at a time. I want to get through the RAI first.

Like I said, his major concern is his eyes. I hear its rare to lose your sight. Thats MY concern, his is of course appearance and the eventual possibility of orbital radiation or surgery. I just hope by treating it now, we are on top of it. If you guys would like, I can update you on how everything is going over the next few weeks.

You guys are a great support. Thanks!


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## CareBear3030 (Jun 9, 2010)

I am not trying to add to your concern, but my uptake scan did not show my nodules. I had no remarkable hot or cold nodules on my uptake scan. Which only means that my nodules were functioning just as hyper as the rest of the gland.

My ultrasound showed them the nodules. I have since had a biopsy, showing papillary cancer. I'm scheduled for TT on Tuesday.

Did they give him an ultrasound?


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## Gravehater (Aug 19, 2010)

No they did not. However, I really want him to have one. Just so that I can sleep at night. I keep hearing that Thyroid cancer is more easially treatable than some other cancers, but that if left alone it can pop up in other areas. So, now thats hes had the iodine, once he's settled a little bit with his levels and such, im going to see if he can push for one. His doctor seems to be on xanex or something and never has a worry in the world for him, but I worry after everything ive read, better to be safe than sorry.

Random question: does having graves give you a higher chance of Lupus?


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## Andros (Aug 26, 2009)

Gravehater said:


> No they did not. However, I really want him to have one. Just so that I can sleep at night. I keep hearing that Thyroid cancer is more easially treatable than some other cancers, but that if left alone it can pop up in other areas. So, now thats hes had the iodine, once he's settled a little bit with his levels and such, im going to see if he can push for one. His doctor seems to be on xanex or something and never has a worry in the world for him, but I worry after everything ive read, better to be safe than sorry.
> 
> Random question: does having graves give you a higher chance of Lupus?


If a person has autoimmune disease, that sets the stage for the possibility of others to manifest. Sadly. Most of us do have one or more.

You are right about anti-D's; the whole world is on them and nobody gives a (you know what) about anything. We are living in unbelievable times.


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## Gravehater (Aug 19, 2010)

Im going to push him to get tested for that too. As of today everything is good. Eye irritation coming and going. Mostly just puffyness and it comes and goes, i assume, when he is more hyper.

His blood pressure is like a roller coaster. for example, yesterday, it was 167/90 and today its 112/86. So, its kinda scary, not sure if its a concern or dangerous or anything, or if its kinda normal for the RAI or not????????? He does feel alot better than before, and to my ENDLESS irritation he keeps wanting to work out. Bloody hell. Its been 2 weeks since RAI, come on!!!! lol. I have to watch him like a overprotected mother lol.

Other than that, of course hes pretty tired, and then hes not, and then he is. But hes lost 7 lbs. And this is a pretty thin guy too. So were watching that. I hope everyone else has been good. Think of you often.


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## Andros (Aug 26, 2009)

Gravehater said:


> Im really glad you said that about trauma, because he had NO problems until he was suddenly taken off the meds (methmazole) to prepare for the uptake and the eventual RAI (Today at 11 CST). Hes seen the opthamologist, and is on the 7 days steroids. He has 4 days left, which will probably cover him through his "kryptonyte" as I like to call it, stage. I know there are alot of side effects from the steroids if he needs them long term, but i think if we get him off them and on them maybe we can stave this off. I think all this just kind of hit him at once. He thinks hes been hyper for a few years now, progressivley. I just wish the initial GP had referred him sooner.
> 
> Cancer is another worry I have, but the uptake scan didnt reveal any nodules or anything that hes been made aware of. They say theres nothing to really biopsy. I, myself, have been through some ovarian issues where I didnt have tumors or anything considered serious at the time, until one day it WAS serious. I would like to prevent any kind of experience like that for him. Hes only 27, so if I can push him to do something NOW instead of in 10 years, I want to. So, ultimatley, ill make his life more hell than the thyroid does until he gets a biopsy. But one stone at a time. I want to get through the RAI first.
> 
> ...


Of course we want to be updated. By all means and radiation saved my eyes. I had 2000 RADS 3 times a week for 6 weeks concurrent w/ prednisone.

Eyes were very very bad; corneas bulged and touching the lens of my glasses, temporary blindness in the left eye and all sorts of things. It was a horrid horrid experience...............

So, if I can help in any way, I am glad to do so. For now, sleeping w/ head elevated, cooling packs on eyes and periorbital area, lacrilub ointment by night and moisturizing drops by day. DO NOT USE ANY DROPS W/ DECONGESTANT. It make the eyes worse; a lot worse.


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## Gravehater (Aug 19, 2010)

Gravehater said:


> Im going to push him to get tested for that too. As of today everything is good. Eye irritation coming and going. Mostly just puffyness and it comes and goes, i assume, when he is more hyper.
> 
> His blood pressure is like a roller coaster. for example, yesterday, it was 167/90 and today its 112/86. So, its kinda scary, not sure if its a concern or dangerous or anything, or if its kinda normal for the RAI or not????????? He does feel alot better than before, and to my ENDLESS irritation he keeps wanting to work out. Bloody hell. Its been 2 weeks since RAI, come on!!!! lol. I have to watch him like a overprotected mother lol.
> 
> Other than that, of course hes pretty tired, and then hes not, and then he is. But hes lost 7 lbs. And this is a pretty thin guy too. So were watching that. I hope everyone else has been good. Think of you often.


Today he is feeling okay, BP around 125/90 I think. He hates taking it. Hes on my nerves lol. Im probably on his nerved more haha. Hes still having some ups and downs, but not as bad as before. I think it gets less everytime. Im just hoping he only had to do one round of the RAI. 4 weeks to go before first tests. I had to hide his key chain for the gym hahhaha. Hes itching to try and work out. Hes one of THOSE.

His eyes usually react with his mood strangely. If hes upset about something they will flare up. So trying to keep him in a neutral mood and ice and antihistimine free tear drops in his eyes. Seems to be working, but we know we may have to watch this for years.

Cant wait until the light at the end of the tunnel is close! I want those tests so we can jump the next hurdle of hypo!

Question: Ive been so wrapped up in his hyperthyroidism and graves that I havent really thought about this - When he is hypo and on synthroid (or whatever) will working out be okay for him? Hes a big time sprinter and likes to lift. Will it be safe? Also, the hair thing... If it was the graves that caused the loss, will it grow back once his levels are more normal?


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## Andros (Aug 26, 2009)

Gravehater said:


> Today he is feeling okay, BP around 125/90 I think. He hates taking it. Hes on my nerves lol. Im probably on his nerved more haha. Hes still having some ups and downs, but not as bad as before. I think it gets less everytime. Im just hoping he only had to do one round of the RAI. 4 weeks to go before first tests. I had to hide his key chain for the gym hahhaha. Hes itching to try and work out. Hes one of THOSE.
> 
> His eyes usually react with his mood strangely. If hes upset about something they will flare up. So trying to keep him in a neutral mood and ice and antihistimine free tear drops in his eyes. Seems to be working, but we know we may have to watch this for years.
> 
> ...


Yes; once on thyroxine he will be fine and he needs to be consistent w/ the gym and sprinting so his meds can be titrated to what he "always" does.

I lift heavy (for a female), fast walk over 4 miles a day, do yoga, heavy-duty gardening and all sorts of very physical things. I am 68 and feel great!


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## Gravehater (Aug 19, 2010)

QUESTION!!!! My boyfriend just went in for his 6 week check up after RAI. I dont have his results yet, the doctor didnt give them to him and now I have to bug him to call him to get them. But he put him on 75MG of synthroid already. So I imagine that means hes already hypo... which is almost miraculous in an unbelievable kind of way with everything ive read. I dont trust that but OK. Well now hes losing sleep almost nightly with restless leg syndrome that has just developed seemingly overnight a week or so ago.

Is this normal???


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