Can someone help me understand TED
Hey people I’ve just signed up to this forum an I just wanted some advice and help really. Today I had a appointment with a ted doctor an he basically told me that there’s no swelling in the back of my eyes when I had my ct scan but my eyes are still bulging my left more than right an I thought he wanted to see me so I could have orbital decompression surgery but that wasn’t the case he just told me if they would ever consider doing the surgery it would be in two years time an apparently I’m still in the early stages but I’ve have graves for over 4 years an I’m not to sure how long I’ve had ted but it got a lot worse in 2023 an I didn’t really notice until I saw some friends who I haven’t seen in awhile an they could tell the difference an to be honest it made me quite depressed an I haven’t really felt like myself the past year an a bit all I want is to look how I did before all of this but it seems like that’s never going to happen I don’t like how I look anymore an I hate seeing myself in pictures or my reflection is there any possibility of this changing? Or do I just accept the fact that this is how it is from now on? I don’t have any blurred vision I get pain behind my eyes sometimes an they water quite a bit an when I sleep they stay open so I’m glad I don’t have any double vision but yeah I’m 25 I got diagnosed with graves when I was about 22-23 an I just feel like my doctors will do anything but the orbital surgery on me. They have already offered to take my thyroid out two years ago but I refused because even if they took it out it doesn’t mean that ted will go away because you can have ted without graves an I would prefer to keep it as I’m trying to control my graves an make it better if that’s possible like is there anyway you can get rid of graves my eating healthy an exercising? I go the the gym 4-5 days a week an recently started eating healthy by making all my own meals with non processed foods an cut out sugar because some people say that you can cure some autoimmune diseases by just having a healthy diet i don’t know if that’s true or not but I just hate feeling that it’s something you can’t change by bettering yourself. if anyone could help me or give me some advice it would be amazing I just feel alone in all this an who else would understand better than people in the same predicament sorry I know this is really long winded but my doctor just doesn’t seem to understand where I’m coming from an if you’ve never had ted then I could imagine like any other disease or illness you wouldn’t understand the mental side of it an just the symptoms because that’s what you’ve been taught. I would go private but I live in the UK an it would cost me more than it would for a deposit on a house to have the surgery done an that’s just not feasible for me so yeah any help would be appreciated thanks everyone.
Hi, I’m so sorry to hear that you’re going through this. I can certainly relate. TED changed my appearance a lot, and I couldn’t recognize myself in the mirror. It was a very dark time for me. To address some of your questions - there is currently no cure for Graves’/TED. I’ve been a professional fitness instructor for 15 years, and I truly wish that exercise and general healthy eating could control my autoimmune conditions, but that isn’t the case. They are serious medical conditions, and leaving Graves’ untreated can have serious health consequences. Regarding surgery - my doctor wanted to wait for me to reach the inactive phase of TED before considering surgeries and wait six months to make sure my eye symptoms were no longer progressing. Basically we wouldn’t want to do surgery only to have my eyes change again in the following months and need more surgeries. It was an agonizing and very difficult wait. I do think the results of surgeries depend on a lot of factors including the surgeon and how severe the case of TED is. I had a pretty severe case and needed orbital decompression to address the swelling along with corrective eyelid surgeries to address the eyelid retraction. My eyes do not look the same as they did before TED, but they certainly are much better now. If you don’t have any swelling behind the eyes, have you talked with your doctor about if eyelid retraction is causing one eye to look different than the other? And would it be possible for you to speak with another doctor to get a second opinion? Please feel free to keep us posted. Also, I’ve written several articles about the emotional side of TED. Feel free to take a look, and please always feel free reach out if you’d like to talk. You aren’t alone. https://thyroideyedisease.net/author/tasty-meditation Wishing you a peaceful day, Jessica H (thyroideyedisease.net, team member)
