[askillma]

#1019331

Hello, I’m wondering why Dr.’s and hyperthyroid literature almost exclusively discuss lid retraction and proptosis (bulging) in relation to Graves Opthamology. What I have is one eye with lid retraction while the other eyelid is quite droopy. The droopy side is the one that first alerted me something was wrong. Has anyone else had this experience? What is the progression for you? I am hoping they will someday match again! Any advice would be so helpful. Thanks – Lisa

[mamabear]

#1070916

Hello and welcome! I don’t have this issue but wanted to say hello and welcome and please know that others do come in and will respond but it depends on the time of day.

Hope you get the answers you are looking for and glad you found us for support!

[askillma]

#1070917

Thank you so much! This is a very useful forum and it’s just so nice to know we are not alone ” title=”Smile” />

[kaicee118]

#1070918

Hi Lisa – I don’t know a whole lot about it, but I just know that my eyelids have been droopy nearly since the onset of my Graves. My most recent eye orbit CT scan shows signs of some mild proptosis (bulging) but my eyes really don’t look like that – they look hooded, or half closed. Some days are worse than others. I also have light sensitivity and wear prescription sunglasses.

I just had my thyroid removed, and I know that Graves eye disease runs a separate course than Graves itself, but I’m hoping that my eyes eventually resolve. Today is a pretty bad day – in fact, this morning my right eye was droopier than my left, whereas 95% of the time the left is droopier.

Good luck to you – I hope you have a good ophthalmologist ” title=”Smile” />

Karen

[Ski]

#1070919

It is very common for TED (thyroid eye disease) to manifest differently in each eye. Once it has begun, it’s kind of a "wait-it-out" kind of thing, until you reach a confirmed cold phase, then you can discuss the options for correcting remaining issues with an ophthalmologist, preferably one who has experience with all of the procedures. It’s possible that your eyes will "match better" when you get to the cold phase, but no guarantees. In the meantime, I know some people have found emotional relief in lightly tinted sunglasses they can wear, even indoors, so they aren’t so self-conscious about talking with people and meeting their eyes.

[askillma]

#1070920

Thanks for the advice guys, and it’s good to know this is normal. Is it true that Prednisone can help? Has anyone had luck with that for improving the eyes?

[Ski]

#1070921

As long as your eye disease is in the phase they refer to as the "hot phase" (at the beginning), it is likely that Prednisone can help. There is also some argument to be made for directed radiation (beams directed at the eye socket), and if one works for you, it is likely both will work, which minimizes the need for either. In other words, you can take less Prednisone if you also use directed radiation, and you don’t have to have as much radiation if you are also taking Prednisone ~ this limits the possible side effects from either treatment. Prednisone has some serious potential side effects, so you need to discuss this with your ophthalmologist to determine whether it’s a good option for you. The main goal is to limit the amount of damage that is done in the hot phase, because what remains at the end is typically scar tissue from that period. The less severe the changes, the less scar tissue there will be, and the less the eyes must improve in order to be close to "normal" at the "cold phase."

[scubarn]

#1070922

Prednisone worked for me back in 2002. It is not a drug to take lightly though. I had many side effects, but my eyes went partially back into my head. I also wore lightly tinted eyewear indoors since my eyelids would not close and it scared people.

[bwrigley23]

#1070923

I was diagnosed with Graves’ 2 years ago. After the birth of my child in November, my right eyelid began to droop and my left eyelid is retracting. It seems to be exactly what askillma was experiencing. I am wondering what has happened since your last post. My doctor is thinking I will most likely need surgery in about 6 months to a year. But I am wondering if Prednisone would help in the meantime.

[frefluterb]

#1070924

Hello,

My eyes have been very different from the start. I appreciate this forum for the reason that I know I am not alone with these goofy symptoms. I have also learned that there are allsorts of diffrences between all of us. My right eye is more affected than the left, however I see better with the right, but have skewed side vision on the right. I seem to tilt my head to the right and look slightly left which seems to give me the best ability to see correctly, ( but now I have a kink in my neck) lol. hat, dark glasses and window blinds are lifesavers because of severe light sensitivity. I am not driving because it is too difficult to focus and my right periphael is so bad, it gives me wreched headaches. I sleep alot… I have a long wait for the cold phase, "I hate the wait and see" but cannot do the steroids… but ‘just for today’ I will wait and see

[Kimberly]

#1070925

frefluterb wrote:Hello,
"I hate the wait and see" but cannot do the steroids… but ‘just for today’ I will wait and see

Yes, unless one’s vision is directly threatened, "wait and see" is the usual approach. Sorry you are dealing with this, but one day you will be looking back at this experience from your rear-view mirror! Sounds like you have a good regimen in place to protect your eyes. Other measures that can provide some relief include frequent use of artificial tears (and ointment at night), elevating the head of your bed to alleviate swelling, and using a mask or taping the lids shut at night if they are not closing completely. Best of luck!

[Kimberly]

#1070926

bwrigley23 wrote:My doctor is thinking I will most likely need surgery in about 6 months to a year. But I am wondering if Prednisone would help in the meantime.

Hello – Prednisone doesn’t "cure" the eye disease, but is a *temporary* fix that can provide relief for some patients. You will want to discuss the pros and cons of prednisone with your doctor, due to the potential side effects of steroid use.

[hyperm]

#1070927

Hi,

I know what you mean. Thankfully my eyes are now in the "cold phase" but I have been left with what looks like a tired eye sometimes. I never had anything like that before so I noticed it profoundly for quite a while.

My eyes would swell so much that I had constant stys in my eyes – I kid you not when I say I looked like Rocky they were so swollen.

Hopefully it will settle down soon xx

[Author]

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