# Occular Radiation?



## JellyB (Apr 18, 2012)

Good idea or bad and why and alternatives/experiences etc...?

Also do drops help and tablets for swelling/protrusion and should you just let the eye problems run their natural course or sort the darn thyroid out by getting it cut out once and for all or RAI it?


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## dlo1725 (Oct 30, 2011)

I have discussed options with both my eye specialist and Endo. RAI is out as it makes the eyes worse. Oral Prednisone is an option however the side effects are fairly extensive. Eye doctor stated that the Prednisone will reduce eye swelling but there is a trade off as weight gain is inevitable as well as moon face, upset stomach, insomnia and brittle bones. Radiation treatment can cause brain tumors and you will most likely lose hair around temples.

My Endo advised that he would not be super aggressive with the treatment for my eyes and recommended I just ride it out. Eye doctor did prescribe steroid eye drops a few months back and I did bite. The drops do not reduce the swelling around the eyes however my eyes feel much better. No more gritty feeling and double vision. Some say my eyes are looking better.

Unless you have an extreme case of GED I would ride it out.


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## JellyB (Apr 18, 2012)

@dlo1725,

Can I ask what drops they were? My eyes arent too bad, just irritated and uncomfortable, although i have only had this symptom for a few months and if it takes up to 2-3 years then i have a long wait for things to settle down. Do some people only have issues for a short period... say a few months or a year, or is that a rareity? A lot can change in that hot/cold stage, hmmm.

And have you had your thyroid treated too?


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## dlo1725 (Oct 30, 2011)

Jelly:

I am taking Prednisolone Acetate Ophthalmic Suspension USP; 4 drops in each eye daily. I have had the eye issues since October 2011 and went to an eye doctor in December, who specializes in GED, after eyelid swelling got worse . At first the doctor did not prescribe the drops and told me to sit tight. It wasn't until my second visit in February when I reported having double vision in one eye that he prescribed the prednisolone drops.

I have read that eye involvement can last 3 months to 3 years. I think I am still in the Hot stage but things have settled a little bit since I started the drops. I also use over the counter moisturizing eye drops like Sistaine and GenTeal as my eyes dry out at work due to poor air quality and continuous use of a computer.

As far as my thyroid...I am on 10 mg of Methezamole per day and labs are near normal. My initial labs in August of 2011, when hyperthyroidism was suspected, were triple the normal levels.

Some days are better than others with the eyes. I am not sure what actually triggers "a bad day".

If thyroid symptoms can be controlled with meds and the eyes are not that bad, I am not sure why one would remove an organ that is needed. If I skip my meds for a few days it is not the end of the world. If you skip meds because you had your thyroid removed, one would think that the results may be life threatening. Just my opinion.


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## JellyB (Apr 18, 2012)

I swear my eyes drink the lubricating drops as I need use them a lot! I sincerely hope neither of us have to wait 3 long years for these issues to settle, and I hope the opth gives me some additional drops too as they are itchy.

Is it true people can experience recurrent bouts of TED after the first one has burned out throughout their lives?


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## dlo1725 (Oct 30, 2011)

I was using the lubricating drops a lot as well; like every hour. The prednisone drops have helped with the dryness so I don't have to use the lubricating drops as often. I too had itchy eyes for a while. You can add allergy eye drops to the mix. Get a recommendation from your eye doctor.

It is my understanding that once the eye issue is gone, its gone. Let's hope that we are lucky enough not to have to deal with our cranky eyes for 2-3 years.

I am used to the way my eyes look and feel now. At first, the swelling and slight bulging of my left eye was disturbing visually. The runny eyes are more annoying than anything else and my hopes for becoming an eye model are shot


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## JellyB (Apr 18, 2012)

Are red visible eye veins and keratoconjunctivitis another side effect of TED for people?


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## Andros (Aug 26, 2009)

JellyB said:


> Good idea or bad and why and alternatives/experiences etc...?
> 
> Also do drops help and tablets for swelling/protrusion and should you just let the eye problems run their natural course or sort the darn thyroid out by getting it cut out once and for all or RAI it?


Having had a very advanced case of exophthalmos, I had 2000 RADS to both eyes 3 times a week for 6 weeks concurrent w/prednisone.

18 months later I was good to go and had orbital decompressions and other related surgeries.

I highly recommend it before any surgery; that is for sure! Otherwise the surgery has to be redone and redone. Not something you would like.


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## Sandex10 (Feb 22, 2010)

JellyB said:


> Is it true people can experience recurrent bouts of TED after the first one has burned out throughout their lives?


I was curious about this as well. I have yet to see any statistics on this.
I think my eyes have finally settled down after @ 3 years or more (right eye has some noticeable bulge). My endo suggested I talk to my eye doc about surgery now. But I want to be sure my eyes are in 'remmission'. And would it even make sense, if they will just get bad again. Any opinions or info about reccuring TED?


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