Advice on TED.

Hi there..... I have TED and don't know an awful lot about apart from picking up from over the internet...... my job is as a singer but I am finding when I sing , that putting it bluntly...... it hurts. I am waiting for eye surgery on my left eye as it protrudes quite prominently , which obviously makes you not want to stand out in public anyway, in fact I would quite happily not leave the house, and also as driving is a huge part of my job and my vision is getting worse , I'm in a bit of a pickle and don't quite know what to do....... any tips from you guys that have been living with this for a long time? ..... or how you personally get through it...... obviously if I don't work , can't pay the rent . Also do you ind sunglasses beneficial etc.etc...... Thanks

[helvella Administrator]

Taro76,

I don't know an awful lot either.

There are quite a few people here who have experience and, I hope, will reply.

There is a specific organisation which could be of interest:

tedct.org.uk/

Please do not take this the wrong way - you are most welcome here. Just that you might get something extra from there.

[Hidden in reply to helvella]

No that's great, certainly wouldn't be taken the wrong way. Thank you for the information. X

[shambles]

I am one of the few that has severe thyroid eye disease, my Graves' was diagnosed by my eyes. I find this the most cruel side of the disease and like you have thought on many occasion I would like to hide away. But, have managed to keep going with the support of family and friends. May I add, I would swap your for eyes any day!

It's good that you are being seen by an ophthalmololgist and you have surgery pending. They can work wonders with surgery now. They are making good progress on both surgery and medications to reduce the swelling, it's only a matter of time. Have read of this:- labblog.uofmhealth.org/lab-...

Dealing with how you are perceived is mind over matter. It is possible to get past how they look. Often you believe they are must worse than others think they are. Try not to compare old pictures prior to the disease as it is just not helpful. Surgery will certainly help get rid of the protrusion and people will never know that you have the disease at all BUT you will because you will not look exactly like you did before. My surgeon joked and said he'd make me look better, no bags under my eyes a few tucks etc, there's something behind that, be prepared for the new you. There is a facebook page for TED's facebook.com/search/top/?q=... which I use to vent and I do need to vent and so will you.

Using sunglasses all the time is completely acceptable, I did it for the most part in the early times of the disease, although I've stopped now and accepted my eyes more. If you are singer, then perhaps glasses might be even more so. (I work in the rock n roll side of the music industry :-)).

I wish you well.

[Hidden in reply to shambles]

Hi Shambles, thanks for your reply.... that's also the side of the industry I work in....... yes I know my eyes aren't as bad as some ..... I think it's the double sometimes triple vision I find the hardest to comprehend, and as you are probably aware most of my job is travelling/driving so a bit interesting at moment. ..... apart from the visual side I don't know what else TED inpnvolves . I have had radio iodine many years ago ......... I hope they are able to do something about your sight etc.... and maybe will bump into you on the fb group..... thanks for your reply. 😁

[humanbean]

I know nothing about TED but just wanted to point out this link :

elaine-moore.com/Articles/G...

Down the left hand side of the page there is a list of 3 articles and a book which may be of interest to you.

[Hidden]

Thanks Human bean . Will look it up. X

[duster]

I had ted and hated going out. The double vision was horrible, I kept falling over my little dog. After cutting my face on a grave stone after falling over her I put a little bell on her collar, problem solved.

I was given prisms for my glasses which corrected my vision, I then had a 6 week course of intravenous steroid treatment and my eyes got better. I’ve had graves for 8 years and manage it with the medication and am very well.

I still use eye drops and wear sunglasses when the weather has even a little brightness but I can wear my contact lenses with no problems and my eyes are no longer swollen. My confidence is back and I’m getting on with life.

The eye hospital was fantastic.

I hope you get back to normal and carry on with your singing.

[Hidden in reply to duster]

Thanks Duste....... pleased you are well now. 😁X