Aa
Help...what do I do about Thyroid Eye Disease?
I have had hyperthyroid for about 20 years now. I underwent the radioactive iodine treatment about 8 years ago and my thyroid has been pretty regulated. Even after the radioactive treatment I still have the bulging eyes. I have seriously considered undergoing the eye surgery's to correct the problem, but I fear that I could actually make my eyes worse than they are. I am very self conscious because of my eyes. I do not look people directly in the face when I have a conversation with them and I always squint in pictures. My family tells me they don't even notice it, but I do ever time I look at a picture of myself. I feel like I constantly have the deer in the headlight look! Has anyone had these psychological problems? Is there support out there for this? Also I would like good information on the sucess rates of the retraction surgeries and decompression surgeries. I have found a little bit of information, but not alot. It seems like the UK has alot more on this topic than any one in the US. Thanks for reviewing my concerns.
Hi There,
I had bilateral orbital decompression surgery and a procedure to correct some lower lid retraction problems 5 weeks ago tomorrow - all of my problems are related to Graves Eye Disease. I had some misgivings before the surgery, but so far am very pleased with the results. The (very small) incisions are totally healed and the puffiness and swelling are just about gone as well. I have already seem marked improvement in the way my eyes feel - the tearing and dry eye feeling are gone for the most part. I still will need to have "part two" of the process done - surgery to correct the upper lid retraction, which is almost always done a few months after the decompression has healed. I was a little self conscious about my appearance but was lucky to have the bushy "family" eye brows, which minimized the "bug eye" look to a certain extent.
I was able to find a lot of info by 'googling' Graves Eye Disease, Thyroid Eye Disease, Orbital Decompression and lower lid retraction. The information available ranges from very basic to quite detailed, so you can pick what you are comfortable with. I haven't yet come across a support group specifically for this disease, but the people on this forum are very supportive no matter what the problem.
My advice on a surgeon would be to find an opthamologist who is also trained in reconstructive plastic surgery, and who has done a lot of these procedures. Most teaching colleges/medical schools should have one on staff or be able to tell you where to find someone with the training necessary. I have lived in 2 medium sized cities over the past couple of years and have been lucky enough to find excellent surgeons in both places.
I wish you the best.
I had bilateral orbital decompression surgery and a procedure to correct some lower lid retraction problems 5 weeks ago tomorrow - all of my problems are related to Graves Eye Disease. I had some misgivings before the surgery, but so far am very pleased with the results. The (very small) incisions are totally healed and the puffiness and swelling are just about gone as well. I have already seem marked improvement in the way my eyes feel - the tearing and dry eye feeling are gone for the most part. I still will need to have "part two" of the process done - surgery to correct the upper lid retraction, which is almost always done a few months after the decompression has healed. I was a little self conscious about my appearance but was lucky to have the bushy "family" eye brows, which minimized the "bug eye" look to a certain extent.
I was able to find a lot of info by 'googling' Graves Eye Disease, Thyroid Eye Disease, Orbital Decompression and lower lid retraction. The information available ranges from very basic to quite detailed, so you can pick what you are comfortable with. I haven't yet come across a support group specifically for this disease, but the people on this forum are very supportive no matter what the problem.
My advice on a surgeon would be to find an opthamologist who is also trained in reconstructive plastic surgery, and who has done a lot of these procedures. Most teaching colleges/medical schools should have one on staff or be able to tell you where to find someone with the training necessary. I have lived in 2 medium sized cities over the past couple of years and have been lucky enough to find excellent surgeons in both places.
I wish you the best.
GravesLady thank you for the info.
Applecore...I do know the Lord as my Savior, which is amazing. I have been praying for God to put people in my life to help me with the situation. My husband says that this is the way God made me and I know that! Thank you so much for your prayers, I do need them and I will lift you up also. I always go back to Job when I feel this way. It seems that through our trials we need to press on and later use these trials to help others. It still breaks my heart when I look in the mirror, more so at pictures of myself. I feel like a freak, but my family tells me I am perfect and that they don't notice. I guess I should count my blessings because I do feel better with my graves under somewhat control. But I still have my off days also! I don't have energy, achness which is very hard because my mind moves a million miles an hour, but my body can't keep up.
Thank you so much, you are a blessing!
Applecore...I do know the Lord as my Savior, which is amazing. I have been praying for God to put people in my life to help me with the situation. My husband says that this is the way God made me and I know that! Thank you so much for your prayers, I do need them and I will lift you up also. I always go back to Job when I feel this way. It seems that through our trials we need to press on and later use these trials to help others. It still breaks my heart when I look in the mirror, more so at pictures of myself. I feel like a freak, but my family tells me I am perfect and that they don't notice. I guess I should count my blessings because I do feel better with my graves under somewhat control. But I still have my off days also! I don't have energy, achness which is very hard because my mind moves a million miles an hour, but my body can't keep up.
Thank you so much, you are a blessing!
I am praying for you. God healed me of hypothyroidism many years ago. Last year my thyroid came up hyper and I had the radioactive iodine. Everything was ok until November 0 6 and my body seems to be reacting to food, and my numbers are now hypothyroidism and pretty bad numbers. I am praying against fear, anxiety and thyroid disease. I know that God is able to touch me again and certainly to touch you. Do you know the Lord as your personal savior.
I have slight TED in one eye that hasn't gotten any worse than from the first day it appeared. I know exactly what you are feeling. Mine is not bad enough for surgery. I mostly hide behind sun glasses.
We have a lady who went through a bunch of surgeries for her thyroid eye disease and another who just went through her first. Plus there is a lot of info regarding TED. Search engine to the below.
Good Luck!
GL
GravesDiseaseAndRAI
We have a lady who went through a bunch of surgeries for her thyroid eye disease and another who just went through her first. Plus there is a lot of info regarding TED. Search engine to the below.
Good Luck!
GL
GravesDiseaseAndRAI
Have an Answer?
You are reading content posted in the Thyroid Disorders Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
