T.E.D what is the legacy,

[Shortnsweet54]

Hi, i was diagnosed hyperthyroid in 2010, with meds after about 4 years it finally calmed down and stopped and I am no longer having thyroid issues. It did however leave me with thyroid eye disease/Graves which at one point was so painful and distressing as i had all the symptoms and so many dreadful problems, and was of the two times in my life almost suicidal and asked the consultant to remove my eye as i could see no other wya of stopping the pain, double vision etc. With hind sight i don't think the consultant explained it all to me, he was very terse and had little compassion and aftera few harsh words and a desperate letter to him i was referred to someone else, who i have to say was amazing. It took approx 4 years for it all to calm down and be in "remission" as it were before i could have surgery in the eye muscles, thankfully it was only 1 eye, in both eyes it would have done for me. Post surgery was dreadful and it took me 8 months to recover, but that's more an issue with me and anaesthetic and surgery as i swell up so much which makes recovery long and apinful. I then had an eye lid lift 2 years later.. glutton for punishment i think, but my peripheral vision was so poor it had to be done. Again massive issues with inflammation, infection in the stitch line that I was still having pain in 4 years later i was told there was nothing else they could do, given the slight protrusion on my left eye which the consultant didn't advise having surgery for, given the massive issues i have with anaesthetic, surgery and recovery.

I have never however been told by any of the consultants I have had what the legacy and fall out of T.E.D is, it seems it's a case of there is nothing we can do get on wiht it. I still feel i have eye issues, dry eye, very painful eye muscles at times, light sensativity and general eye pain.

What are everyone elses experiences of life after surgery, is what i have within the remit of lfe with/after Graves. thank you and sorry for the long post x

[pennyannie]

Hey there Shortnsweet

I'm with Graves and following RAI thyroid ablation in 2005 am managing Graves, thyroid eye disease and hypothyroidism.

I'm not sure I can answer your question but might I suggest you take a look at the website run by Elaine Moore. This lady has the disease and found no help or understanding with her journey back in the late 1990's. so she wrote a book to help others in the same position.

Her website in the States is now a very well respected platform for all things Graves and this lady has become a leading medical researcher in the field of autoimmune disease and takes an active part in the open forums helping field questions and advising patients accordingly.

[Shortnsweet54 in reply to pennyannie]

Hi, thank you so much I'll certainly check her out. It seems once the medical world have "dealt"with you you're on you're own and being told well you've got eye disease live with it doesn't help at all. I'm having another flare of painful sore eyes and it does make life quite miserable. thanks for the above info, Jan

[pennyannie in reply to Shortnsweet54]

I think you've summing up of the medical knowledge and care is absolutely spot on.

Forgot to say in my previous post, to just ensure that whatever eye drops and potions you may use for the relief of symptoms, that they are all preservative free.

[Anniegal in reply to pennyannie]

Elaine Pacer Moore is a brilliant researcher and medical writer and editor.

elaine-moore.com