[Kaeljia]

#1019402

Hi, I was diagnosed three and a half years ago with Graves Disease. I had at first thought I had Parkinsons Disease, and always felt like a Mac truck was running me over it didn’t matter how much or how little I did. My T4 was at 60 when I was diagnosed. I was put on heart medication. For a year I took the meds, and then I was stable and taken off. Within a year to the day it came back, since I knew now what it was we caught it before it got too bad. It was high 30’s. I figure I’ve had Graves Disease since I was 15 years old, weight gain and loss…. all my life.
This January I had double orbital decompression. After the operation like hours after I felt a great amount of pressure gone from my eyes, and I could breath. Who knew all that pressure was there. I do wish they gave me more information on what to expect in the following months though. Before the operation I had excessive tearing of the eyes, which I still have, I am also light sensitive, and can not stand hot white flashes of light, reflective surfaces or sunny days. I have to wear very dark sunglasses even on cloudy days. Some times I manage a few hours outside without sunglasses because the glasses bother the bridge of my nose. I pay for it with headaches though and sore eyes.
After the operation I rubbed my right eye too hard, and noticed within a day a large lump the size of a pea or rather the shape of a lima bean under my lower eye lid, when I pulled the lid down to look I noticed a lump of bloody tissue attached to the lower lid. It resembled a blood blister. I figured I must have caught a peice of skin during the rubbing. It went away after a few days.
It has happened two more times. this time its in my left eye, but it seems to be white with discharge that loosens itself off of the lump and comes out a off white color.
I normally have discharge that crusts at night, and if I’m not careful and keep my eyes moist at night my eye lids can stick to my eyes. Im afraid of tearing my cornea because of this. I use a eye gel at night which pretty much makes me blind till morning, or rather blurry eyed/ Don’t ask me to stop a burgler cause I might mistake you for them LOL.
I still have some blurred vision and find myself lifting my head to see things better or more clearly. I haven’t gone back to work cause I don’t honestly know how the heck I’m suppose to.
I haven’t found anyone to talk to about this and finally searched and found this site. I hope to talk to other that have gone through this eye procedure and find out that what I’m going through is normal.Also find out what the heck that lump is under the lower lid.
I know I’m leaving a lot of information out.. I’m just excited to hear back from someone. I will answer any and all questions the best I can.
Oh I took the radiated iodine last July, and in June am going in to have the upper lids done.
I can tell you this, during the entire time I had Graves Disease, I fought to keep my thyroid intact, silly I know. My GP suggested I get the radiatediodine right away, but I wanted to see if I could fight and win this one. lol right.
I did lose almost 20 lbs after the radiation, and gained it all back this last winter. My eyes were bulging but that was pretty normal to me, but they progressively got worse to the point where they were sticking out past the bridge of my nose and I was hitting them all the time, sunglasses could not be worn cause my eyes hit them.
I do have a question? For those of you whom have had double orbital decompression or even singular, was your face still slightly paralized months later, I still cannot feel the upper part of my face from my lips, teeth to under my eye lids. Although even that has changed, I could feel water like streaks going down my face like icecube tears inside under my skin, and slowly parts of my upper lips and cheeks started to gain back feeling. Now its only the outter lips, and I still cannot open my mouth wide, or bited down to eat. I can’t bite down on a sandwich or apples, oranges anything. My teeth are still bothered by the operation.
Is this normal?
It is only the front teeth now as apposed to all my upper teeth so I know its getting better. BUt so long?
I’ve taken up enough of your time…and I think I’ll go read some more of the other posts for now.
I don’t regret the operation, just wish I had more information knowing what to expect, what I would go through afterwards. I feel like Im always complaining…and figure my poor family must be getting tire of it. I know I am. So I don’t talk much about it. I’m still not driving though I can’t do shoulder checks and find myself driving asif I have tunnel vision. As long as I don’t move my head around everything is clear, other wise, it takes a few moments for my eyes to focus. oh there I go again chatting …. I’ll go now… give people time to answer all my questions. Maybe find some of my answers in someone else’s post. Thanks for bearing with me.
K

[RhondaG4]

#1071421

K,
Welcome…I’m glad you found us. The folks on this board are awesome. If some of us don’t know the answers…others do..or will try to find out for you or point you in the direction where you can find out yourself.

I understand totally about being tired of hearing yourself complain and thinking your family is tired of it too. And really unless your going thru it yourself, you really can’t understand. Even tho I "hopefully" don’t have the TED at the moment, I just had RAI and it is a concern of mine. That is part of what is so great about the folks on this site. Even if they haven’t gone thru exactly what you have, they still can understand all that you go thru and are willing to listen to us vent if nothing else.

Welcome to the family. Sorry it has to be such crappy circumstances that your a part of our family, but welcome non the less. You’ll find kindness and compassion here like none other, and info and support. Hope this helps. Your not alone anymore!!!! Hugs Rhonda

[Kaeljia]

#1071422

” title=”Very Happy” /> Hi Rhonda, thank you for such a warm welcome.
I can honestly say every procedure I went through; I took as a step in the right direction. When I had RAI I had no idea what to expect. This young nurse walks in with an apron. I tell her "oh you don’t need that, over few years back I had a hysterectomy." She giggles and says its okay, and hands it to me. I wait again a young male nurse walks in and tells me he’s here to do something else… its a small room what more can there be?
A few minutes of him adjusting dials and knobs he tests my thyroid with a meter, the thing beeps and bongs… JK and in walks the girl again. THe male nurse dons an apron himself. She is carrying just like homersimpson, a steel container about 3" high and 1.5" in diameter. oh she is carrying it with tongs and away from her body like it could jump up and bite her.
I look at her, she then pulls another vial that is made of steel but looks like a medicine bottle out of the larger heavier bottle.
I look at her with a strange mixture of what the heck is going on here..and whats next?
She then slips the smaller long bottle out and I assume she is going to pass the pill to me…. She says sorry you can’t touch it. OH Right Its radiated..duh what was I thinking… She then puts it into a smaller steel little version of a pill dispenser… and hands that to me, the young male nurse hands me a dixie cup of water.. It looks like a normal vitamin sized pill.
Go figure this has enough radiation in it to kill my thyroid?

SO I take the pill… no biggie… now I have to remember all the rules to taking RAI…. clean the toilet after yourself, disenfect the sink… I just didn’t even bother to cook for two to three weeks… figured it was safer that way… Never mind I kept my toothbrush in a seperate ziplock baggie and when the radiation was finished I destroyed it. I also made sure I didn’t let anyone else use my bathtowels or cloths. I washed all my own laundry..if I could I would have slept in a different bed… I did not kiss or hug or put my face/head near anyone for over a month just to be safe.. My son was jonesin for a mommy kiss goodnight.
So anyways I digress.. soo easy to do. After the pill they check the radiation level with which my body is absorbing it..depending on how bad the thyroid is, determines how much the body will absorb. My T4 was at 34 that day, so I figured it would be not bad… my thyroid absorbed 98.5% of all the radiation. The rest just passes in your urine.
Hence cleaning the toilet after yourself. It didn’t glow either so I guess I absorbed most of it. Although I was told if I used a blacklight on myself I’d see some glowing in the neck area.

So that is my experience with RAI, I had no side effects, I did’t feel different… I was put on Sythroid within a few days of being Radiated, and it was a mild dose and then uped after a month or so. I am still at that level now, I did feel days where I considered it crashing but I never experienced that total crash hit the bottom of the barrel. The synthroid helped with that.
I did feel sluggish and moody, but thats the norm. My eyes were a different story… the entire time I was diagnosed with Graves Disease they had showed no more than my usual slight bulge. Almost two weeks after getting RAI, I noticed an increase of tension in my eyes, and it was down hill from there.. My eyes were being pushed up into my brows and misshaped like an egg… hence my orbital decompression on both.

I guess taking everything as another step to getting back to a normal me, was how I delt with each circumstance, the meds, the RAI the operation. It was the only way I could deal with it sainly, I think it helped my family more than myself cause I tried hard to not complain. Thats hard. But it would never get me anywhere so why bother.

All I can suggest is that it will be different, better ? remains to be seen, different ? Yes.
For almost a year I hated looking at myself in the mirror I did not recognise me, my eyes were so misshapen I hated it, no makeup which wasn’t bad I can do that… but the mad mad look that always looked like a crazy women looking back at me, I have no idea how people could look at me and not think I was going stark raving mad in looks atleast cause thats what it looked like. I wanted to take a picture of how I looked before GD to my Dr so he could make me look like that again….. but the photo was rather large…lol and well I figured he didn’t need the pressure.
Oh well,
Have a great day , take it onestep at atime… and I hope I can help someone the same way I hope someone can help me.
I’m here if you need to talk.
K thats what I looked like all last year, a constant state of angry shock. LOL

[RhondaG4]

#1071423

Hi K and your welcome….was wondering…when the eye thing started, did you get a headache and lots of pressure like a sinus headache and redness where the whites generally are?

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