Hi Andi

I've been suffering from the same symptoms for 3 months now. I've seen general pc's, opthamologist, neurologists and neuro-opthamologist's. I've had a ct scan and an MRI. I was finally diagnosed w/Thyroid Eye Disease and given a steriod injection. MY SYMPTOMS HAVE NOT GONE AWAY!! Were you ever able to get a diagnosis? Has any treatment helped? I'm hope your doing better as i know how terrible this feels. Good luck and thanks for any information.

Andi (too!)

Hi! To cut a very long story short... After falling very (not long after I posted the above) ill my doctor gave me blood tests FINALLY, and was diagnosed with Hyperthyroidism/Graves Disease. I was treated with an anti thyroid drug Carbizamole (sp) and a beta blocker for the shakes (for three months). After a year and a half my blood tests came back *normal* and I've been in remission since. ALTHOUGH, my eyes are still quite puffy. Along with a Thyroid Specialist, I am also seeing and Opmothologist (who is a surgeon as well) and I have a pre-op appointment with her on the 17-04 - I am having decompression surgery and she will also *clean up* the puffiness around my eyes in the second op. Thank god it’s all free (I live in New Zealand, we have great free healthcare here).


In relation to steroids and Graves Opmothology, it’s a hit and miss situation. When my eyes were REALLY bad at the beginning I took prednisone (steroid) for two weeks, didn't work, which was frustrating. NOTHING seems to work in relation to getting rid of the puffiness. Time makes the eyes look better, and the puffiness does go down a little, but with me, nothing has worked, and I have tried everything. I know also that smoking makes them worse and prolongs the puffiness. I'll try to explain what is happening to you: behind your eyes you are making too much fluid for your eyes to cope with - it has to go somewhere, so it pools in your upper and lower lids (hence the puffy look), also, the muscles that hold your eyes in place are swollen, this also pushes the fluid from around your eye into your lids – which makes them feel gritty etc. The only thing that will help that I can see is, giving up smoking (if you do), time, and/or surgery. My surgeon has told me in the past that some people don’t need any surgery and it just goes away on its own (usually after 1-3 years), there is no medication as such for Graves Opmothology alone.

I’m sorry for the long drawn out post, but I really hope it helps you in some way.

Any more questions that you can think of let me know, I’ve been through hell and back with this bloody disease, and any help I can offer you would be great.

I look forward to hearing back from you!

Regards
Andria

Hi Andia,

Thanks for the information. I'm glad to hear that you are better. It definitely has been a rough road.
I was happy to hear that your treatment has been helping. My mother was diagnosed w/Graves about 8 years ago and unfortunately she had to have her Thyroid distroyed. She now takes a pill daily to act as her Thyroid.
I guess I just have to be patient and let the steroid do it's thing it's just aggrevating because I'm blind in my other eye. I keep thinking that I'm going to lose my sight.
Thanks again for the information. Good luck to you!

Cheers,
Andi

I was hit hard in the head in auto accident, maybe by air bag?. My left eye felt like I got poked with a pencil, hurt a lot. Now 2 and half yrs later my eye lids get swollen and eys hurt and that gritty feeling also. My opthomologist gave me drops for the scatch looking redness I get with it sometimes but no help or answers on the pain or swolleness. I wake up each morning looking terrible..especially when left one is RED too. Do you think it could be caused fromnerve damage? I have nerve damage in my wrists and both feet..I still hurt in many places from this accident. My family and some others don't understand that I am in pain daily..but I AM! My feet throb constantly and still swollen around my ankles...bottom of my feet feel like I have cement stuck to them..hurts to just stand a few minutes. Have not slept well since this accident..truck did not stop at his stop,I had right of way. He crossed the small road and I had no where to go so we collided. He kept going for a while so my upper body swung around, left arm hit door and right hip nerve is impinged, both lower and upper back hurts and neck. Hard to still do normal life! But that is what everyone excpects of me..and to not mention any pain. Thanks for your help. N in CA