[catstuart7]

#1059009

Good evening all, I’ve begun to feel little twinges in the muscles behind my eyes and I’m getting nervous. They’ve been dry and red for many months now. If this is the beginning of TED, is there anything I can do at this stage to keep it from getting worse? I got the name of an appropriate ophthalmologist so I’ll be setting up an appointment but if it is like with most specialists that appt is likely to be weeks away. And he’ll see me and say Ha! You don’t have a problem, come back when you have a real problem, give me $200. But by the time I have a real problem it’ll be too late won’t it…

Any advice?

[TammyB]

#1171528

Unfortunately I really don’t have any knowledge to share but I am right with you when it comes to the nervousness or even fear with what may be yet to come. I am more and more disapointed with the lack of info I have received from my MDs. I know they can’t explain every little detail but I realize how uninformed I have been. I had just assumed (I know the saying:)) that after the RAI I would likely be hypo and on hormones. Did not realize the stats on still being affected with the eye dz afterwards esp, if you are a smoker. I last had my eyes checked about a year ago from regular optometrist because of some off and on blurry vision (but was on meds for other health probs that I knew caused this) I did tell her about the GD and she said the muscles in my eyes looked good- not sure if that was good enough for a start or not. Did get some glasses for being mildly farsighted but until recently I would rarely wear them. I have noticed since the RAI that my eyes have been more puffy than normal and the pain, headaches and sensitivity to light a definite problem. I have thought about searching for a specialist since I know that are none locally. I figure I could make an appt and if the job/insurance thing doesn’t change could always reschedule. I figure it can’t hurt to get your foot in the door. Better to be proactive with your concerns than sorry when it comes to something as precious as your health. I know look who’s talking. Anyway, sorry again for the rambling I really am rather quiet in person. Goodnight to anyone who may still be awake.

[Bobbi]

#1171529

If your eyes are dry and red, you should probably be using eye drops. But not the “get the red out” type of drops. We need artificial tears. The quality of our tears changes when we have thyroid disease, making them lubricate our eyes less well than normal tears. We often notice a lot MORE tears than normal at odd times. Ironically, this abundance of tearing activity is an indication that our eyes are too dry. It cannot hurt for you to use artificial tears — preservative free formula– in the days that you wait for the visit with the opthamologist. And we are recommended to use the preservative free type, in single dose packets, because the preservatives can cause irritation or allergic reaction.

[catstuart7]

#1171530

Thanks Bobbi I would be in big trouble without the drops! I do use the preservative free drops but they just evaporate so quickly. I also use an oily ointment at night to prevent corneal erosion. There’s just nothing that is enough for my eyes to return to normal

Thanks Tammy, yes nervous…scared might describe might state of mind about it all. And no apology needed for rambling, everybody needs to ramble sometimes. I also find my thoughts less organized than they used to be I often wonder if the Graves is involved.

[Bobbi]

#1171531

Some — a few– of us have to use those drops three or four times an hour. The key is keeping the eyes lubricated and not feeling gritty.

[catstuart7]

#1171532

Wow Bobbi, yes if I were to use them as often as that it might help. I guess I had become resigned to being uncomfortable all the time. I will try more frequently and see what happens!

[Kells1]

#1171533

Bobbi wrote:

Some — a few– of us have to use those drops three or four times an hour. The key is keeping the eyes lubricated and not feeling gritty.

My eyes also seem to ‘drink’ the eye drops as i also put them in several times each hour. Has anyone used the steroid drops yet or had them intravenously?

[snelsen]

#1171534

To Kells1-
THe tear consistency changes with TED, and when that happens there are not as lubricating as they have been and should be to protect the cornea. I imagine the cornea on your eyes might be very dry, thus seem like they are soaking up the drops.
But a big caution about steroids. Several eye doctors explained to me that using steroid eye drops and having oral or IV steroids are completely different subjects. The main caution is about the eye drops. Using steroid eye drops should be used very short term, and under the careful supervision of the doc. So check that out carefully.

Of course oral and IV steriods have their pros and cons. I did have both, with the goal of reducing inflammation and swelling during the active phase of my TED. They reduced the swelling, thus the double vision, for as long as I took the steroids, but as soon as they were discontinued, the symptoms came back as bad as before and worse. They have their place, and in TED, sometimes they help get you over a “rough spot.” For instance, if you have pressure on your optic nerve, short term steroid use will reduce the swelling, thus the pressure on the optic nerve, so further damage is not done, until it is determined that an orbital decompression might need to be done to save vision.
Shirley

[Kells1]

#1171535

Thanks Shirley.

I have heard its maybe best to let things progress naturally without meds, but like you mention, if the nerves are at risk then I guess you have to weigh the benefits from the side effect risks. I have some friends who lost some hair and put on weight they cant get off and had the moon face too and then theres the brittle bones risk. Its a lot to take in as a newbie.

[Kimberly]

#1171536

Hello – If your primary issue is dryness, there is a prescription drop called Restasis that you might ask your doctor about. I’ve heard mixed reviews from other patients who have tried this approach. One issue is that it actually can take several weeks of using the product before it has a real impact. But if over-the-counter drops don’t seem to be having any impact, it’s at least worth a discussion with your doctor.

[Kells1]

#1171537

Thanks Kim.

I dont think Restasis is available in the UK?

[Kimberly]

#1171538

Hello – I don’t think I’ve heard from any UK patients who have used Restasis, so you might ask your doctor about availability and whether or not it would be appropriate for you. Take care!

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