Puffy eyelids TED

[Sarah2502]

Help! I'm a singer and have puffy eyelids since March with TED. My graves is controlled and bloods good. But eyes are causing me problems with dryness and watering. Any help for puffy lids ? Anything to help reduce them ? Tried cold compress and selenium, desperate as I look so awful and need to perform on concert stage but to wear make up looks like I have been punched in the face!

[Silver_Fairy]

Does the puffiness ever go down? Mine doesn't and I was told by my Ophthalmologist that the skin was stretched and wouldn't go back as normal without surgery.

Watering means they overly dry, step up the eye drops, but if using more than four times a day you need one that is preservative free (even the NHS agree on that one!)

[Sarah2502 in reply to Silver_Fairy]

Hi Silver Fairy! Thanks for this. No puffiness has not gone down since March. Not getting any worse but worrying. I use hycosan drops which are great. Oh god. Hope skin stretched is not permanent. My consultant doesn't seem fussed about it and just smiled and said 'yes I can see you have changed facially, but we won't treat aggressively unless vision impaired' how's your vision ? Blurred ? Double ? What's your plan ? Thanks for replying! X

[Silver_Fairy in reply to Sarah2502]

Are you under an Ophthalmologist? You should be monitored by one if you have TED.

My Endo didnt mention anything and it was only when I asked the Ophthalmologist that she said that corrective surgery could be done as not classed as cosmetic.

[Sarah2502 in reply to Silver_Fairy]

Yes I am under an Opthalmogist - I have asked him twice and he said that there's nothing he can do about puffiness. Is your corrective surgery on NHS ?

The Endo said same thing to Opthalmogist. Strange. Perhaps I should push further ...?

[Silver_Fairy in reply to Sarah2502]

I have been discharged and didn't pursue it (although would like to) and the corrective surgery would have been on the NHS

[redeyes2]

I have Graves Opthalmology aka Thyroid Eye Disease, my eye dr says he has seen quite a few cases in people that are not "active" according to their blood work. Now, I have a cyclopes eye and my other eye isn't much better. It is all caused from Graves Disease and Hyperthyroidism. I was treated with Methimazole 10 mg. It was too strong for me and made my gut hurt. So I stopped taking it. Endo put me on 5 mg Methimazole. I took for about 2 weeks... then tests showed no sign in my bloodwork and I never took it again. My eyelids were just "puffy" then and my ophthalmologist measured the two eyes and saw they were different. She said to use ice packs. (that was 2 years ago) A year goes by they are getting worse, I mention this problem to all drs, my GP says try ice packs, I tell her it didn't make any difference, my dermatologist said to stop putting anything on eyelids including make-up and see if that helps combined with ice eye pads. Did that ever since and it still has not worked. I mention to the oncologist, my rheumatologist and endo, I am at my wits' end. I go back to eye dr because everyone says that is who is in charge of this part of the anatomy. Anyway, she dx a cyst in my eyeball, cholesterol halos and refers me to an eye dr that specializes in eyelids and Graves Ophthalmology. He notices right away, I have tear duct blockage and my puffiness by this time is from below my eyes an inh and a half to above my eyebrows and includes my lower forehead. I have headaches every morning. I have been monitored monthly and the scans show my eyeballs are protruding beyond normal ranges and getting worse. In addition to that the worst one has also caused the eyelid to not be able to close all the way. I didn't see that. He actually took a picture of me without glasses and showed me. I had no idea, no wonder my eyes and lids hurt all the time. Now they are beyond just puffy. I feel your pain too, as I am also a performer on stage. Now I wear dark prescription glasses to avoid questions and it helps. It will be done in 2 maybe 3 stages. First, repair the eyelid after that heals, 3-6 months and then most likely decompression surgery unless I get lucky and it resolves on its own, which oddly enough does happen sometimes. Anyone experienced in any of this, let me know what to expect! Thanks.