• My confidence has taken a huge knock because of my eyes that are bulging and teary and nose that's runny.
• The complete destruction of self-esteem. Not only was I worried about my losing my eyesight, I didn’t recognize the woman I saw in the mirror.
• Completely changed my personality and ability to function daily.
• It affects all aspects of your life even your self-esteem.
• It’s been continuing years of low confidence & avoidance of social settings & always hiding behind glasses when I don’t always need them.
• It completely and utterly destroyed my self-confidence while delivering brutal symptoms as I desperately searched for answers for nearly 2 years.
• Not only did it change my vision, but it changed my appearance. That has changed my personality as I no longer have any confidence. I feel ugly.
• It’s made me so self-conscious. I don’t even know if it’ll ever get worse and I know it won’t go back to normal.
• Not only was I worried about my losing my eyesight, I didn’t recognize the woman I saw in the mirror.
• I hate my eyes.
• I used to have beautiful eyes, and it makes me sad that how I look has changed, and that people notice/wonder about how red and swollen my eyes are.
• Before TED I was told I was beautiful, and that I had beautiful eyes. I always wanted to try contact lenses and can't because of TED.
• My wife and I were dinning out at a local restaurant and a young boy (8 or 9) having dinner with his family look at me, turned to his dad and said ..."look dad that man has scary eyes". My wife and I paid our bill and that family’s bill as well and left. I have never been out to eat in a restaurant since. This was about five years ago.
• It caused me to isolate from friends and family not only because of how I looked but also because the horrible double vision was very disorienting.
• I do hate the way one bulges more than the other.
• At 63 years old and having TED for 40 years, I am still uncomfortable with the bulging eyes, uneven eyelids after surgery, sensitivity to light, redness, and general discomfort.
• I wish that I could have normal looking eyes again. It has been too many years. I feel ugly with how large my eyes remain. I will never feel the same or look the same again.
• It's good days and not so good but the swollen lid & one eye seems to look inward more and still bulgy & occasional bothersome irritation I think might be eyelashes I wish my eyes looked normal again.
• Not only did it change my vision, but it changed my appearance. I feel ugly.
• Even though I don’t experience most of the impacts of TED like double vision or that involves impacts on seeing, the everyday pain, the feeling of “looking like a monster” due to my eyelid retraction affects me a lot physically and mentally. One eye lid is retracted and the other closing down. My body is trying to open that low one, hence my eyebrow is up all the time. So, other than looking monstrous, I also look like angry all the time…and I feel angry too…agitated, all the time…feel alone…helpless. I don’t want to look in the mirror. I don’t want to be in public. So much more to say….
• It takes away from my appearance. Not a pleasant situation.
• I feel like I am getting back to normal. But initially I was very depressed by my change in appearance.  I felt I did not look like myself.
• I hate my appearance! The TED bulging is only in one eye. My face is no longer symmetrical, and I hate going out in public or seeing people I haven’t seen in a while. Very depressing.
• The doctors that I saw, while all highly qualified, almost uniformly discounted the psychological effects of TED. Several bluntly told me that my appearance should be of no concern since sight functionality had been restored after surgery. I was taken aback by this level of callous disregard for patient experience and concerns.
• Graves’s disease has robbed me of so much in life. Mentally, it is taking a physical toll on my appearance and has destroyed my self-image.
• I still feel self-conscious since my eyelids are better after the severe retraction, but not as they originally were, and I feel like I look very different and avoid photographs.
• While my eyes were bugging out of my head it was awful. Once a child looked at me and began to cry and then ran away back to his mom.  Awful, awful, awful. 
• My eyes still bulge, and I do not look the same as I did before TED.
• Blurred vision has had the biggest negative impact on me, change in appearance would be second.
• I still have eyelid retraction and uneven eye appearance. I have had lid retraction surgeries twice already. The only options left for me are cosmetic. It sucks. I look like a different person.
• I hate my reflection. It no longer looks like me. I feel like people stare at me, maybe it’s because I look like I am staring but I’m not. It takes away your confidence.
• I was pretty before, I had pretty eyes. And now I’m different looking. My specialist doesn’t care. It’s hard to explain to strangers life before Graves.

• The psychological effects of anxiety, insomnia and depression are often misunderstood.
• My persistent intense anxiety prevents me from pursuing any further medical treatment. Intense unrelenting anxiety has crippled my life and began after RAI and has not improved since then in 2014.
• It completely runs and controls every aspect of my life. Not a day goes by where I’m not stressing out about my eyes. It has controlled my life to a point where I can’t live normally and have to limit myself.
• Now stable, but anxiety and depression are high, and I experience PTSD.
• I struggled with physical and mental health during this. The anxiety, panic attacks, brain fog, double vision, change in appearance, headaches, pain in eyes, was taking me away from everything I was and knew.
• It’s caused a lot of anxiety that I didn’t expect.
• It can be a very emotional, depressing disease and I think that social workers or therapists should be connected to endocrinologists' practices and the endocrinologists should recommend them to patients with active disease. Probably the best thing that I did for myself during the 7-ish active years of my disease was to connect with and participate in the Graves Eye Disease Facebook Group. I also think that Zoom group therapy sessions with a professional facilitator would be REALLY helpful and positive for those with active disease and the family members who are providing emotional support to them.
• Initially I was very depressed by my change in appearance.
• I was miserable and depressed for 2 years while I waited for the disease to go into remission.
• Getting depressed everyday do not want to go out.
• It's an uncomfortable and lasting disease that affects your whole life and mental state. I would encourage people to seek the treatment if it's available to them.
• This is a very difficult disease that causes tremendous damage to one's health, ability to be independent, and psychological well-being.
• Even though I don’t experience most of the impacts of TED like double vision or that involves impacts on seeing, the everyday pain, the feeling of “looking like a monster” due to my eyelid retraction affects me a lot physically and mentally. One eye lid is retracted and the other closing down. My body is trying to open that low one, hence my eyebrow is up all the time. So, other than looking monstrous, I also look like angry all the time…and I feel angry too…agitated, all the time…feel alone...helpless. I don’t want to look in the mirror. I don’t want to be in public. So much more to say….
• The doctors that I saw, while all highly qualified, almost uniformly discounted the psychological effects of TED.
• Docs should heavily consider psychological/social distress impact of the disease, and as a debilitating disability that affects social, financial, career outcomes.
• I have suffered through pain, disfigurement, loss of vision, anxiety, financial and emotional difficulties that have left me nearly defeated.
• Graves’ disease has robbed me of so much in life. Mentally, it is taking a physical toll on my appearance and has destroyed my self-image.
• It is a horrible disease affecting patients’ functionality but also emotional health.
• I worried about losing my eyesight.
• I am so worried that my daughter and grandchildren may have inherited a gene that makes this disease more likely.
• The thought of it coming back, being blind, scares me to death.
• It’s made me so self-conscious. I don’t even know if it’ll ever get worse and I know it won’t go back to normal.
• I feel lucky that it's not worse, but the prospects for the future can be worrying.

About a dozen patients mentioned the social impact, with many mentioning specific family impacts. (Appearance/confidence, which is included as a separate category, spills into this issue as well.)

• My marriage suffered because we both did not know what was wrong with me.
• My wife and I were dining out at a local restaurant and a young boy (8 or 9) having dinner with his family look at me, turned to his dad and said ..."look dad that man has scary eyes". My wife and I paid our bill and that family’s bill as well and left. I have never been out to eat in a restaurant since. This was about five years ago.
• Thyroid eye disease is by far the worst thing I have ever had to go through, and I have been through a lot. It caused me to isolate from friends and family not only because of how I looked but also because the horrible double vision was very disorienting.
• I am so worried that my daughter and grandchildren may have inherited a gene that makes this disease more likely.
• I am 16 and there is no one that is qualified to treat my age group. I was diagnosed at 11.  My family had to travel all over the country to get care and I put them in a burden.
• Double vision took away my love of reading and some activities with my kids.
• It was also intimidating having everyone who knew me asking what was wrong with my eyes.
• It's worse than having breast cancer, which I had 16 years ago. I feel isolated.
• The social isolation should not be ignored.
• It’s been continuing years of low confidence & avoidance of social settings & always hiding behind glasses when I don’t always need them.
• My social life has significantly decreased since TED.
• Feel alone, helpless. I don’t want to look at mirror…I don’t want to be in public.
• Some days I can’t even have my eyes open due to pain and sensitivity and have to sit in a dark room with my eyes closed.
• I hate going out in public or seeing people I haven’t seen in a while. Very depressing.
• Getting depressed every day. Do not want to go out.

Almost two dozen participants mentioned loss of daily functioning, with several mentioning specific hobbies.

• Completely changed my personality and ability to function daily.
• It affects all aspects of your life.
• I feel most people do not understand my limitations. My limitations have drastically changed my quality of life.
• Drooping eyelids make it difficult to see.
• I was relegated to having double vision for years not being able to drive, etc.
• Impacts my life daily, both at work and home
• Not a day goes by where I’m not stressing out about my eyes. It has controlled my life to a point where I can’t live normally and have to limit myself.
• Real disability not recognized.
• No two days are the same. The roller coaster ride of this disease is hell.
• I just want the prescription eyedrops to work even better so that I don't need to pause to wipe my eyes while trying to write or read.
• Docs should heavily consider psychological/social distress impact of the disease, and as a debilitating disability that affects social, financial, career outcomes.
• It’s NASTY!! DRIVING, TV, READING ALL DIFFICULT. 
• It has affected all aspects of my life...a very frustrating disease.
• It has totally changed my life in so many ways.
• I was losing independence fast and there was nothing to stop it. I am a nurse, and my health was spiraling out of control. The anxiety, panic attacks, brain fog, double vision, change in appearance, headaches, pain in eyes, was taking me away from everything I was and knew.
• It is a horrible disease affecting patients’ functionality but also emotional health.
• Even with prism glasses, I'm still limited in the angles I can look without incurring double vision. Playing pool or working on my car becomes difficult.
• Hard to see in the light, can't see at night to drive, walking into dark rooms, can't sleep on my right side because of the pressure in my head.
• TED is more difficult than many people think, and it really puts limitations on doing things I used to enjoy, especially reading. It causes me to have very poor sleep quality which also negatively impacts my life.
• Droopy eyelid affects quality of life in reading, looking down.
• I still have double vision when looking to the left and right. Reading is difficult because one eye can track the print faster than the other and this causes fatigue. I get around this by wearing glasses and covering one lens and reading with one eye.
• I read a lot and Graves’ interferes with that. I've learned to take more rest breaks for my eyes and keep them moist so as to not damage the eyes anymore.
• [Would like] Ability to see better, be able to read for pleasure.
• Double vision took away my love of reading and some activities with my kids.

• Stress is the major cause of my TED symptoms and work is stressful, I wish that my disability insurance covered TED, so I did not have to work.
• TED impacts my life daily, both work and home. I've changed careers because of it and had a substantial decrease in salary.
• This disease can be so challenging. It has had a negative impact on both my personal life and professional career. I had a long remission, but TED returned. One of the most difficult periods for me to work was when I had a new boss and who thought my anxious appearance meant I was not competent at a job I had been doing well for many years. When I felt Increased pressure at work and home, my symptoms got worse.
• Docs should heavily consider psychological/social distress impact of the disease, and as a debilitating disability that affects social, financial, career outcomes.
• Basically ruined my life, my earning ability and my independence.
• I have suffered through pain, disfigurement, loss of vision, anxiety, financial and emotional difficulties that have left me nearly defeated.
• I was losing independence fast and there was nothing to stop it. I am a nurse, and my health was spiraling out of control. The anxiety, panic attacks, brain fog, double vision, change in appearance, headaches, pain in eyes, was taking me away from everything I was and knew.

The multiple choice portion of the survey captured the number of patients who were experiencing specific symptoms. These comments provide additional detail on specific symptoms or describe how a patient might experience a cluster of symptoms.

Bulging

• My eyelids still do not close, even after 4 surgeries! My eyes water terribly every night while sleeping because they do not close all the way.
• I do hate the way one bulges more than the other.

Double Vision

• The horrible double vision was very disorienting.
• I still have double vision when looking to the left and right.
• Even with prism glasses, I'm still limited in the angles I can look without incurring double vision.
• After decompression surgery on both my eyes, my double vision got worse and I had to put a prismatic lens on my glasses, and I will probably need strabismus surgery to fix it.

Blurred Vision

• Blurred vision has had the biggest negative impact on me.
• Have slight blurred vision for distance.

Eyelids

• My right eyelid looks droopy.
• Drooping lids cause eyes to tire. Eyelashes touch pupils irritating them.
• Now that the Graves’ in my eyes is no longer active, my eyelids are too droopy. They often will flip under when washing my face.
• My eyelid was lowered too much during eyelid surgery. I still can't squint.
• I am left with very heavy eyelids and fat prolapse.

Eyebrow area

• My eyebrow is up all the time so, other than looking monstrous, I also look angry all the time.
• The swelling under my brows is unbearable.

Headache/Migraine/Pain

• I have had near constant occipital pain and migraines because of cocking my head to look up at monitors, other people, and movie screens, etc.
• Some days I can’t even have my eyes open due to pain and sensitivity and have to sit in a dark room with my eyes closed.
• I'm not sure if my current pain is due to a reactivation of TED or something else. I've had worsening headaches centered around my sinuses/eyes.
• I suffer a lot from eye pain, headaches, and light sensitivity. Is it possible that this is the reason I've had worsening headaches centered around my sinuses/eyes? It isn't on [doctors’] radar.

Eye Pressure

• Eye pressure. Was down after TEPEZZA® but after almost two years, pressure is back to high normal in each eye.

Multiple Symptoms

• The watering of the eyes is not fun to deal with and the pains in my eyes hurt badly too.
• At 63 years old and having TED for 40 years, I am still uncomfortable with the bulging eyes, uneven eyelids after surgery, sensitivity to light, redness, and general discomfort.
• Post-surgical…everything has improved … but occasionally my eyes will still bulge, puff, water (albeit without the old grittiness and pain) and feel some pressure from time to time, especially or coincidentally in response to perceived traumatic or highly emotional times.
• Drooping eyelids make it difficult to see & perhaps my dry eye wetness will allow me to wear eye makeup again and stop always wiping my eyes with a handkerchief. Wet eyes are a nuisance & all this… are still YEARS after I’m better! (No more double vision or severe eye bulging any longer).
• Affecting everything with me, losing my sight for almost 3 years, and in pain until remission.
• It's good days and not so good but the swollen lid & one eye seems to look inward more and still bulgy & occasional bothersome irritation.
• TED [delivered] brutal symptoms as I desperately searched for answers for nearly 2 years…terrible facial and eye pain while my eyes swelled up and began to slightly bulge.
• I still have dry eyes, eyelid retraction though minimal, and my eye lid does not close all the way during sleep causing dry eye. Also have sensitivity to light.
• I'm experiencing dry eye and resulting pain and now I have inflamed oil glands on my eyelids, which is just another time-consuming health issue.
• I…need to pause to wipe my eyes while trying to write or read; also, I hate the eyelid swelling but wouldn't want aggressive treatment.
• I had a total thyroidectomy at age 15 for toxic goiter/Graves. In my 20s, only my right eye was affected by bulging out. IV steroids took care of it. Now 45 years later, I have pain and stiffness in the muscles behind my eyes when trying to focus.
• It started with right eye eyelid swelling, then left eyelid swelling and then three months of misdiagnosis, terrible bulging, muscle pain and palpitations.

Stress and symptoms

• Stress is the major cause of my TED symptoms and work is stressful.
• When I felt Increased pressure at work and home, my symptoms got worse.
• Occasionally, my eyes will still bulge, puff, water (albeit without the old grittiness and pain) and feel some pressure from time to time, especially or coincidentally in response to perceived traumatic or highly emotional times.

Treatment Options – Multiple Treatment Modalities Required

It’s notable how many participants needed multiple surgeries (sometimes more than one surgery of the same type) as well as various medical treatment options over a number of years. These comments illustrate how long and complex the TED journey can be.

• Already had bilat orbital decompression, radiation, methotrexate, eye drops and oral/IV steroids. Currently controlled. I am 16 and there is no one that is qualified to treat my age group.  I was diagnosed at 11. My family had to travel all over the country to get care and I put them in a burden.
• My eyelids still do not close, even after 4 surgeries! My eyes water terribly every night while sleeping because they do not close all the way. Currently going through round 2 of TEPEZZA® and already had thyroid removed, radioactive iodine ablation on remaining remnant, 12 rounds iv solumedrol, oral prednisone, 4 eye surgeries and antibodies remain high. very frustrating!!
• Not a candidate for medication, already had bilateral orbital decompression, radiation, methotrexate, eye drops and oral/IV steroids. Currently controlled.
• Diagnosed in 2010 and finished all treatments by 2016.
• Have had multiple decompression and strabismus surgeries as well as muscle surgeries.
• I had my first decompression/eyelid surgery in 2000 and most recent decompression/eyelid surgery 2017.
• In the beginning I had 11 surgeries in 18 months. I got fed up and still have double vision all these years later.
• I have had everything done…nine muscle surgeries and orbital decompression and radiation twice…I have accepted that my eyes will never change. I have had everything done and know this is my vision, my eyes and nothing else can be done.
• I believe my TED is in the active phase again after multiple surgeries. I've had about 15 surgeries. I can get my double vision corrected and my eyes heal too fast, and I get my double vision back.
• After multiple eye surgeries, I feel I am coming out on the other end of the journey feeling halfway decent.
• Already had 5 eye surgeries and now it has returned. Preliminary information I’ve been given is I’m not a candidate for additional surgeries and insurance most likely will not cover non-surgical treatments.
• I have had surgery twice on one eye and once on the other. I need another surgery on the eye that has had 2 surgeries already.
• Orbital decompression solved my bulging eye problem and was easier to recover from than eyelid surgery. I have had one eye done. I have had multiple eyelid surgeries and one decompression. I feel like I am getting back to normal. 
• After decompression surgery on both my eyes, my double vision got worse, and I had to put a prismatic lens on my glasses, and I will probably need strabismus surgery to fix it. And after that also the eyelid repair surgery.
• I have had bilateral decompression, eyelid & muscle repair. My Dr's were excellent I am happy treatment/surgeries saved my vision.
• Since my orbital decompression and strabismus surgery 4-1/2 years ago, my eyes have been pretty much normal.
• The decompression and reconstruction of my eyelids of both of my eyes has put everything back in its proper place.
• I still have eyelid retraction and uneven eye appearance. I have had lid retraction surgeries twice already. The only options left for me are cosmetic.
• Post-surgical hypothyroid / Graves' disease / TED - everything has improved since thyroidectomy, orbital decompression/strabismus surgeries but occasionally my eyes will still bulge, puff, water (albeit without the old grittiness and pain) and feel some pressure from time to time, especially or coincidentally in response to perceived traumatic or highly emotional times.
• Overall, I’m happy with the outcome of the surgeries I had in 2018-2019. I’m very glad that my doctor and insurance company considered the eyelid surgery a reconstruction as it improved both the function of my eyes and the disfigurement from TED.
• I have already had three decompression surgeries. They helped. I have had TEPEZZA® but would not mind doing it again. I have also had several lid retraction surgeries. I have totally lost vision in one eye because it would not close, and insurance would not allow me to get it done. Had to wait until I got on Medicare. It’s no fun!
• My eyelid was lowered too much during eyelid surgery. I still can't squint. Orbital decompression years ago, and TEPEZZA® more recently has been a huge help, but my measurements in both eyes are still protrude 5-8 mm more than before TED.
• Working with my doctors I went through 10 radiation treatments at the UofAZ medical center on my eyes followed by IV steroid treatments spread over 6+ months.
• I'm very interested in another round of TEPEZZA®; it helped but did not last. Willing to try new medication. Double vision uncorrected by prisms & impacting my life. Will have muscle surgery again- attempt to decrease double vision, headaches, etc.
• I have had bilateral decompression, eyelid & muscle repair. My Dr's were excellent Awaiting approval was stressful It is a lifelong challenge, along with Graves & the treatments. I am happy treatment/surgeries saved my vision.
• After decompression surgery on both my eyes, my double vision got worse, and I had to put a prismatic lens on my glasses, and I will probably need strabismus surgery to fix it. And after that also the eyelid repair surgery. Well after I done all IV and oral steroids and there wasn't any real improvement, I tried to be enrolled in a trial … but I was not chosen.
• I have tried all the surgeries and not much more can be done. It has affected all aspects of my life...a very frustrating disease.

The survey asked about different treatment options and their perceived effectiveness, with these written comments providing additional context.

Orbital Decompression

• Through my orbital decompression, I learned that I also had a deviated septum, which had to be fixed during the first orbital decompression surgery.
• My doctor thought decompression surgery was too risky, so I did not have it and steroids not effective enough, so I didn't try them.
• I still have fatty deposits under my eyes as well as extremely saggy skin around eyes from decompression surgery.
• I was denied decompression surgery in 1983 at the Mayo Clinic. Have been dealing with Graves’ Disease and TED ever since.

Strabismus

• The strabismus surgery was life changing for me. Completely corrected my double vision which was the most difficult symptom both mentally and physically. I chose the eyelid surgery because I am very self-conscious about the way my eyelids look although I am no longer in the active phase of the disease.
• I also still have double vision peripherally, despite the strabismus surgery, which isn't that bad, but it is always there and at times annoying depending on what I am doing.
• After surgery, double vision slowly improved for 5 months until the problem was gone.
• Will have muscle surgery again – attempt to decrease double vision, headaches, etc.

Eyelid Surgery

• My eyelid was lowered too much during eyelid surgery. I still can't squint.
• Eyelid surgery helped with my self-confidence.
• At 63 years old and having TED for 40 years, I am still uncomfortable with the bulging eyes, uneven eyelids after surgery, sensitivity to light, redness, and general discomfort.

Thyroidectomy [Note: thyroidectomy is specific to treatment of hyperthyroidism, not TED, although some studies have indicated patients who have undergone thyroidectomy have had less risk of TED, and several participants noted that TED symptoms improved after thyroidectomy.]

• I had a total thyroidectomy to solve TED and all other side effects I was experiencing from hyperthyroid.
• I wish I would have had a thyroidectomy a lot sooner. I feel this helped me more than any other treatment.
• Post-surgical hypothyroid / Graves' disease / TED - everything has improved since thyroidectomy, orbital decompression/strabismus surgeries but occasionally my eyes will still bulge, puff, water (albeit without the old grittiness and pain) and feel some pressure from time to time, especially or coincidentally in response to perceived traumatic or highly emotional times.
• I also had a Thyroidectomy in 2019 to stop the attack on my eyes which worked.

The survey asked about different treatment options and their perceived effectiveness, with these written comments providing additional context.

Steroid Therapy

• Prednisone would interfere with levothyroxine [GDATF note: we are not familiar with this], and I've never heard of the other drugs. I have been informed that I should have been given prednisone years ago during/after TED. I have taken it for other reasons in the past, and never noticed a change in my eye condition.
• I also was diagnosed with scleritis of my R eye in 2002 and was treated with oral steroids for 2-3 years. Dry, red eyes remain, and only treatment has been artificial tears and warm compresses, plus room humidification.
• The cortisone treatment has changed my body.
• I had a mild flare 9 months ago and used high dose prednisone.
• While on prednisone, had a serious allergic reaction. Horrible and takes forever to remove it from your system. Not an option for me.
• I went through 10 radiation treatments at the UofAZ medical center on my eyes followed by IV steroid treatments spread over 6+ months. My vision in the months following returned to normal.
• My doctor thought decompression surgery was too risky, so I did not have it and steroids not effective enough, so I didn't try them.
• Cannot tolerate Prednisone. Double vision and prisms for life.
• I would rather have targeted medication for just the Graves’ eye disease instead of taking steroids long term, which I have been taking for over 5 years.
• Allergic reaction to prednisone. Not taken seriously.
• I have had a kidney removed due to renal cell carcinoma thus cannot take steroids.
• I had IV steroid treatment which made a dramatic improvement.
• Well after I done all IV and oral steroids and there wasn't any real improvement, I tried to be enrolled in a trial.
• In my 20s, only my right eye was affected by bulging out. IV steroids took care of it.

Botox®

• When my TED began, I had Botox® injections into the eye muscles to help with strabismus and bulging. Over many months, it worked. This was about 15 years ago.
• Eggers did Botox® injections into the eye muscles which helped temporarily each time.
• I received Botox® injection into my affected eyelid - only needed one injection. This worked really well to paralyze the muscles, allowing my eye to close.
• I had Botox® injections to improve my strabismus. Worked fantastic, was relatively inexpensive, and I did not experience any side effects. I have not needed an injection for more than a year but if things worsen, I'd do it again before having surgery or taking other meds. Botox® for strabismus should be an option for all TED patients.

Eyelid Filler

• I was fortunate to find an ophthalmologist that injected my eyelid with filler to help the appearance of lowering the eyelid when in the active phase. Also recommended radiation treatment to stop the progression. Another ophthalmologist just said to “wait” until the active phase stopped and then do surgery.
• I have had Restylane® injections in my lower lid to help even out the fat deposits. My ophthalmologist felt removing the fat deposits might cause undesired results and suggested evening them out with Restylane® instead. I had great results with this method, however it's expensive and short-term.

Eye Drops

• Eyedrops clear the redness.
• Dry, red eyes remain, and only treatment has been artificial tears and warm compresses, plus room humidification.
• I like Xiidra® and prednisone drops. Both have helped.
• I am already using copious amounts of eye drops.
• I currently use hydrating eye drops and special eye glass lenses to help with light sensitivity.
• The only thing I need is to use eye drops for moisture, but at 76 years old my eye glass prescription almost never changes, dry eyes may just be old age.
• Gel eye drops at night are a must.
• I was taking eye drops Xiidra® but insurance had such a high copay. So far, it's been stable, and I just use Systane® eye drops.

Prisms

• I wish I had been sent to the specialist to get prisms much sooner. The prisms really helped with the double vision and made things more bearable.
• Developed double vision 2013, treated with prisms. Stable since then.
• Cannot tolerate Prednisone. Double vision and prisms for life.
• My daughter found a functional optometrist, Dr. Andrea Thau in NYC, who figured out how to make glasses with prisms which have enabled me to see This was after at least four MD's and three people who specialize in measuring deviations advised me I could not wear a prism because it would be too thick and heavy. I got. my life back. It's too late now.

Selenium

• Supplements are usually quite helpful [GDATF note: the only supplement with specific research for TED is selenium, perhaps fish oil for dryness or Vitamin D.]
• I do take 100-200 mg selenium most days but that's all I do.

Note that this survey was completed in 2022, before the label for TEPEZZA® was updated to include an indication for chronic TED. The survey also asked about Actemra® (tocilizumab), CellCept® (mycophenolate mofetil), and Rituxan® (rituximab), but received few or no responses. Additional medical treatments for TED that were not included in the 2022 survey are now undergoing clinical trials.

Patients who have used TEPEZZA®

• Orbital decompression years ago, and TEPEZZA® more recently, has been a huge help, but my measurements in both eyes are still protrude 5-8 mm more than before TED (said to have been caused by an immune response to RAI).
• I'm grateful I was able to take TEPEZZA® a few months after being diagnosed.
• My endocrinologist and my eye specialist both agree that I needed more than 8 infusions. waiting for insurance to respond. I wish they had TEPEZZA® 30 years ago.
• My doctor strongly feels a second round of TEPEZZA® treatments would greatly improve my eventual surgery outcome. I am the ideal candidate for a second treatment with TEPEZZA®. Anthem Blue Cross and Blue Shield of Virginia will not authorize a second treatment as medically necessary since I already completed one round of therapy with TEPEZZA®.
• I have had TEPEZZA® but would not mind doing it again.
• Because of TEPEZZA® I am stable right now. Eye pressure was down after TEPEZZA® but after almost two years pressure is back to high normal in each eye.
• Currently on second round of TEPEZZA®.
• TEPEZZA® helped with bulging and redness and pressure, but I feel the above symptoms slowly returning…
• I’ve used TEPEZZA® with limited success for eye bulging and redness, however I would consider a second course of treatment.
• Currently going through round 2 of TEPEZZA®.
• I'm very interested in another round of TEPEZZA®; it helped but did not last.
• I had one round of TEPEZZA® and it helped. I think I could benefit from additional treatment.
• TEPEZZA® worked some but would like to see if more would be better.
• My Dr. thinks a 2nd round of TEPEZZA® will improve my reactivated symptoms.
• TEPEZZA® only helped with my TED while taking it and for maybe six months afterwards.
• TEPEZZA® helped but had a very bad reaction to it so I had to stop after one infusion. Blood sugar went to 500 and stayed there for about three weeks.
• Am halfway through TEPEZZA® infusions and not seeing any results.
• I finished the TEPEZZA® treatment in Dec 2021. Still waiting on the full results of the treatment
• I did TEPEZZA® and it worked well, but my eyes still bulge, and I do not look the same as I did before TED. I still get swelling and have some double vision.

Patients who mentioned TEPEZZA® but have not used the medication

• I have read that TEPEZZA® is very effective so would want to try it to treat the disease.
• I don’t know other treatments, but I read about TEPEZZA® and I think it can help me heal.
• I’ve heard great things about TEPEZZA®. I’m a newly diagnosed individual.
• TEPEZZA® seems to work well on newly diagnosed patients, it should be used on patients that have been diagnosed a long time ago, I think it might work on them as well.
• I'm not sure TEPEZZA® would help since I have so much damage. I was told TEPEZZA® was not an option since I've had it over 15 years and too much damage exits.
• Is not right that TEPEZZA® was only allowed for newly diagnosed patients.
• TEPEZZA® needs to be available to be administered by an endocrinologist.
• I wanted to do the TEPEZZA® but my insurance company will not cover the cost.
• My doctor is determined I try the TEPEZZA® but I have seen the cost and also don't like the idea of IV.
• I was a candidate for TEPEZZA® but didn't want to take it since it's so new. I was concerned about the side effects of TEPEZZA® like hearing loss and blood sugar levels, that's the reason I didn't get it.
• I went to an Ophthalmologist when TEPEZZA® was introduced and she said, and I agreed, that my eyesight was not threatened by TED and the potential side effects of the drug were not worth the risk.
• Eye disease specialist doctor said TEPEZZA® wouldn’t help me.
• Recently heard of TEPEZZA® when treating related Eye injuries complicated by TED...but have always been told that is cost-prohibitive...
• I am on track for TEPEZZA®, but very hesitant because of side effects, especially hearing loss!!
• Doc says I’m not bad enough for TEPEZZA® but wants to do surgery. Scary!

Treatment options – Other

Other Treatments:

• Tarsorrhaphy seems successful, but one eye may need revisions to accommodate scleral lenses for keratoconus. Check in a year's time to determine if further 'repair' is possible.
• Serum tears have helped with dryness. I have to glob in Muro 128® ointment and cover with eye mask or tape shut to sleep and still they water and wake me up all night long.
• I am currently on CEQUA® for the past 2 months and hoping the dry eye will improve.
• I don't currently need treatment, having had orbital radiation 7 years ago.
• The radiation I have to help the Graves’ seemed to have stopped my TED from becoming worse over time. [GDATF note: believe this refers to orbital radiation and not radioactive iodine, which is not recommended for patients with moderate-to-severe and active TED.]
• I wish these treatments were available 40 years ago.
• Reading is difficult because one eye can track the print faster than the other and this causes fatigue. I get around this by wearing glasses and covering one lens and reading with one eye.
• My "stare" improved once my TSH levels were brought back into "normal" range. [GDATF Note: not sure which treatment option for Graves’ was used.]
• I currently use hydrating eye drops and special eye glass lenses to help with light sensitivity.
• My doctor… disagreed with my "patient advocate" who recommended trying Rituxan. saying the advocate wasn't qualified because he wasn't an MD. [GDATF note: no patient advocate should be recommending medications].
• Won't do anything until my TSH is normal. [GDATF note: Surgeries are riskier while hyperthyroid, but an experienced surgeon can provide options to reduce risk]. I'm a senior now, so my options are limited. It never ends.
• New meds coming to the market exclude people who have had surgeries. Need more med trials on people who have had TED for greater than 20 years. I wish more clinical trials or treatment were open for long term active patients rather than just repeated surgeries where efficacy doesn't last. [GDATF note: this survey was completed in 2022, and trials have since included patients with chronic TED]. Also, would love a treatment to allow my face to return to its original shape.

“Alternative” treatments

[GDATF note: we do not recommend so-called “alternative” treatments, which are not a substitute for medical treatment delivered by a qualified physician. Talk to your own doctor if you are considering supplements or other options.]

• I have started using a PEMF device along with vision therapy, and these have resolved 95% of my symptoms despite high TSI levels. I had fibrosis of the eye muscles 5 years ago and was told my only option was prisms for double vision and possibly surgery. Instead, I did 10 sessions of vision therapy and recovered, even having my retracted eyelids return to almost normal. Then two years ago, I developed proptosis and the double vision returned. This time, I used blue light therapy, which helped resolve 50-75% of my issues. Then in 2022, I started using a PEMF device and I am now at 95%. Why don't doctors explore these other, less invasive options??? [GDATF note: we are not familiar with PMF or blue light therapy – it’s important to note that patients with TED can have some spontaneous improvement, especially if thyroid levels normalize.]
• CDB oil and lotions to help with pain and swelling. [GDATF Note: have not seen research on CBD oil and TED.]
• Self-discovered eye exercises [GDATF note: not familiar with any research on this, again, it’s important to note that patients with TED can have some spontaneous improvement, especially if thyroid levels normalize] corrected strabismus, could give up using stick-on prism on one eyeglass lens.

• I’m in the UK, and I don’t think there is an alternative medication yet. I hope the UK can offer something like this soon.
• There are a lot of people living outside USA like me, those who need these treatments too.
• Drug not licensed in the UK yet.
• The doctors in UAE have limited treatment options for my case.
• [Treatments] are not to my knowledge available or offered in Canada.
• I'm told there is no treatment in India other than corrective surgery.
• [No] Availability of treatments in SA.
• Canada is different. My specialist does not offer these things or medications or procedures.

Over a dozen patients mentioned either experiencing or being concerned about surgical complications and/or medication side effects, which prevented them from pursuing treatment.

• I feel isolated and had a horrible surgical accident to my eye from an inexperienced strabismus surgeon.
• TEPEZZA® helped, but I had a very bad reaction to it, so I had to stop after one infusion. Blood sugar went to 500 and stayed there for about three weeks.
• I was concerned about the side effects of TEPEZZA® like hearing loss and blood sugar levels, that's the reason I didn't get it.
• [Did not pursue treatment because of] My hesitation to have surgery.
• My persistent intense anxiety prevents me from pursuing any further medical treatment.
• My ophthalmologist felt removing the fat deposits might cause undesired results and suggested evening them out with Restylane® instead. I had great results with this method, however it's expensive and short-term.
• [Doctor] wants to do surgery, but I am scared to do this. Doc says not bad enough for TEPEZZA® but wants to do surgery. Scary!
• Side effects are worse than disease. Allergic reaction to prednisone
• I chose not to have any IV meds because of their side effects.
• Would like to try anything before invasive surgery.
• Wishing there were more options with less side effects.
• While on Prednisone, had a serious allergic reaction. Horrible and takes forever to remove it from your system.
• I'm wary of the side effects of those medications.
• I am on track for TEPEZZA®, but very hesitant because of side effects, especially hearing loss!!

Many patients used the narrative section to note that they felt that nothing could be done to further alleviate their symptoms.

• I have done all I can do and expect that this is permanent.
• My eye doctors say there is nothing that can be done and my vision is as good as it can be.
• Nothing has worked. I am in the minority who will deal with this chronically for life. Nothing works.
• I have tried all the surgeries and not much more can be done. It has affected all aspects of my life...a very frustrating disease.
• Eye damage is permanent, nothing more can be done.
• I have accepted that I will always have some issue with my eyes that cannot be corrected.
• At 63 years old and having TED for 40 years, I am still uncomfortable with the bulging eyes, uneven eyelids after surgery, sensitivity to light, redness, and general discomfort but I'm not willing to make things worse. I feel like it's too late for me.

• I was first diagnosed as a child - and at first, the doctor told my mom that I was “bugging my eyes for attention.”
• I live in Zimbabwe…it has been difficult because I was misdiagnosed for over one year. My marriage suffered because we both did not know what was wrong with me.
• It took two eye doctors to finally get a diagnosis, but it seems like not enough is known about it.
• Almost went blind because of missed diagnosis by so called ophthalmologists. I asked several MDs if this could be TED and was told NO. Should be consequences for doctors misdiagnosing and saying it’s just blepharitis and go home.
• Took several doctors gaslighting me before a Neuro-ophthalmologist finally did [diagnose] TED.
• It also took many months and many doctor visits to get an accurate diagnosis which is demoralizing and terribly frustrating.
• I went to my primary care physician and was sent to a gastroenterologist. My husband tore our master bath down to the studs looking for hidden mold (there wasn't any). I saw an allergist that treated me with antibiotics and did a CAT scan of my sinuses. I excluded all cosmetic and health and beauty products and tried various exclusion diets in search of an allergy. Finally, the second allergist I saw thought my neck looked large and thought the cause might be my thyroid. His office arranged for lab work, and I was diagnosed with severe Graves' disease and TED. I believe he saved my life.
• I had no idea about TED (disease/symptoms) until I saw my endocrinologist. She needed this evaluation to determine if I was a candidate for radioactive iodine treatment.  I've always been diagnosed with "dry eye syndrome" so I just thought that was causing my symptoms.
• It was hard getting a diagnosis. I visited two local doctors who just prescribed eyedrops that did nothing. It wasn't until I went to a major teaching hospital in a large city that I received a correct diagnosis.
• I went to three highly recommended eye doctors and none of them diagnosed me with TED or thyroid problems.
• I saw 5 different doctors. My first eye MD told me my complaints were mental all in my head. This was 3 months prior to finding a provider that listened and understood.

• Doctor is not very interested or informed about TED. NHS too busy.
• Doctors are very reluctant to prescribe based on symptoms, and only use blood tests results and that is extremely frustrating for me.
• Don’t know a great doctor that treats the entire problem. treatment should be integral, not only medicine.
• Endocrinologists want to radiate the thyroid and don’t manage TED. Finding a holistic solution is difficult and not mainstream. Doctors just want to prescribe a pill, not address the root cause of what is causing the thyroid to rebel.
• Have not received a good recommendation for a Thyroid Eye Disease doctor, only plastic surgeons familiar with TED surgeries, but I am hesitant for plastic surgery. It's painful and I wish Endocrinologists could advise multiple options--I have only been offered plastic surgery options and I'm not even sure my current insurance would fight me on that...and I prefer non-surgical solutions without further side effects...I am surprised that Endocrinologist that specialize in Graves' disease never seem to have a list of Thyroid Eye Doctors beside plastic surgeons--they really haven't had any recommendations when I ask...it's disappointing and I'm in Boston so you would think they would know with the populations they serve.
• I honestly trust my doctors but I'm not 100% sure that they fully understand the long-term repercussions of thyroid eye disease. I don't think doctors take it seriously or have the time to answer my questions and have a true doctor patient conversation about it. I blame that on the insurance companies.
• I wish providers would discuss upon diagnosis of thyroid disorders the importance of vision checkups.
• I wish there was more education for providers.
• I’d love to know if any of the drugs could help me. Most doctors say to me, “you’re lucky”! And end the appointment.
• I'm tired of so many doctors' appointments after all these years without much change in my condition.
• It would be fab if all medical professionals were more educated about TED and the forms with which it manifests e.g. not everyone is either hyper- or hypothyroid.
• My specialist does not offer these things or medications or procedures. My specialist doesn’t care.
• Neither doctor has ever really explained TED. Information gleaned from the internet!
• No physician seems to know much about TED. Getting diagnosed was hard, getting help is harder.
• None of my doctors recommended selenium, and I wish that they would give patients advice about taking it and being careful not to take too much.
• Not enough information is known by my primary care physician, since I’m not followed anymore by an endocrinologist.
• Not enough knowledge in medical profession to diagnose TED.
• Opticians and GPs should be more aware. I feel like a lot of physicians are not aware of TED and the true symptoms and how it affects quality of life.
• TED specialist and endocrinologist don’t coordinate treatment. No treatment that addresses the full person’s health.
• TED, I have learned, is a super specialty that requires an artful approach to medicine and not simply following pre-existing clinical guidelines that do nothing except generate money for the clinic leaving the patient disheartened.

• I live in Zimbabwe and treatment is very expensive and options are limited.
• I live in Canada, our healthcare is limited, in fact it is nonexistent for non-emergency since COVID.
• No specialists near me. It is difficult. And successful surgery/treatment is not readily available.
• Moved to Naples, FL and have not found an Eye Doctor.
• I would love to talk to a true expert but can't seem to find one even though he is listed on your website.
• Have had difficulty getting help. No physician seems to know much about TED. Getting diagnosed was hard, getting help is harder.
• I also have Macular Degeneration, probably because I am not able to see the right kind of doctors to help with TED and balance the thyroid out. Since TED is also related to the Thyroid you probably should be asking questions regarding the Thyroid also. It is not easy to live with it, there aren't enough doctors that specialize in treating it correctly.
• I have to drive 3 hours there and 3 hours back [for TEPEZZA®]. It's hard for friends to take that much time to spend with me. TEPEZZA® needs to be available to be administered by an endocrinologist.
• All these symptoms make it difficult to receive proper eye care because there is minimal knowledge in my area.
• Only 2 doctors in the area that treat TED and the one I see has not been very forthcoming.
• Small town, nothing local. Can’t drive that distance.
• It's very limited here in Singapore seem like TED & thyroid is not made known but lots of people are going through it.
• I live in Alaska where TED treatment options are very limited or nonexistent. The doctors that I saw, while all highly qualified, almost uniformly discounted the psychological effects of TED. Several bluntly told me that my appearance should be of no concern since sight functionality had been restored after surgery. I was taken aback by this level of callous disregard for patient experience and concerns.
• I am 16 and there is no one that is qualified to treat my age group. I was diagnosed at 11. My family had to travel all over the country to get care and I put them in a burden.
• I don't have the time or money to have orbital decompression with the doctors I trust. They are all 800 miles away.
• Live in rural area and no access to specialists without expensive travel.
• I had to travel to California to get TEPEZZA® as there are no good doctors that treat TED near me.
• No one within a 60-mile radius qualifies. Hard to drive with TED.
• Limited access to providers with an understanding of what TED is and what treatment options were available.

Nearly 30% of the narrative responses mentioned cost and lack of health insurance coverage as barriers to receiving treatment. The following responses provide additional context around this issue.

TEPEZZA®

• My doctor strongly feels a second round of TEPEZZA® treatments would greatly improve my eventual surgery outcome. I am the ideal candidate for a second treatment with TEPEZZA®. Anthem Blue Cross and Blue Shield of Virginia will not authorize a second treatment since I already completed one round of therapy with TEPEZZA®
• MD said my eyes weren’t bulging enough for insurance to cover TEPEZZA®,
• My doctor is determined I try the TEPEZZA® but I have seen the cost.
• Recently heard of TEPEZZA® when treating related Eye injuries complicated by TED...but have always been told that is cost-prohibitive...
• Anthem has denied my 2nd round of TEPEZZA® 3 times over the last 9 months. I am currently waiting for the results of an external review before I will be eligible to apply for patient assistance through Horizon.
• (TEPEZZA®) not covered by insurance. Unattainable out of pocket
• I wanted to do the TEPEZZA® but my insurance company will not cover the cost.
• I was told by my eye specialist Kaiser (my insurance provider) probably would not cover the cost of TEPEZZA® until we had tried other treatments first.

Surgery

• I don't have the time or money to have Orbital decompression with the doctors I trust. They are all 800 miles away.
• Insurance does not cover eyelid repair surgery.
• Surgery not covered by insurance.
• Insurance denied coverage for my last eyelid repair surgery even though my eyelids still do not close, even after 4 surgeries!

Eye Drops

• Insurance won’t cover the steroid eye drops.
• Have applied for help with cost factor with Retasis® even with insurance.
• I was taking eye drops Xiidra® but insurance had such a high copay. I was able to get a coupon to reduce but then had job/insurance change and haven't gone back on it.

Delayed Treatment

Note: Several participants were told that treatment was “cosmetic” – those have been included in a separate section.

• I have totally lost vision in one eye because it would not close, and insurance would not allow me to get it done. Had to wait until I got on Medicare.
• Insurance companies… require steroid treatment as a prerequisite to the desired or prescribed treatments and not only does it waste time, but many patients cannot tolerate steroids. Insurance companies should be more flexible so patients can get the treatment they need.

High Deductibles/Co-Pays

• It costs too much to even use the insurance I have.
• Had to pay out of pocket for care. Which I believe made it worse in the long run.
• My current insurance fights me on every charge related to Graves' disease and often wins...I spend about $2K out of pocket annually already for health to cover uncovered expenses including just monitoring thyroid levels...insurance is very disappointing and charges extra for chronic illness while being very expensive coverage. (I currently have Blue Cross Blue Shield of MA PPO...I previously had Harvard Pilgrim which covered most costs of monitoring my chronic illness...wish I could get that again but cannot...I get the best that my employer offers.
• Financial strain due to limited insurance.
• I have insurance but the copay costs are astronomical.
• My insurance does not pay for "hospital fees" and my ophthalmologist can only be seen at facilities that charge this fee.
• My out of pocket is just too expensive.

General Comments

• I live in Zimbabwe and treatment is very expensive and options are limited.
• Currently unaware if insurance will cover treatment.
• I don't think doctors take it seriously or have the time to answer my questions and have a true doctor patient conversation about it. I blame that on the insurance companies.
• Uncertain as to how much things will cost or be covered (if at all) as things continue to be privatized up here in Toronto, Ontario, Canada. If it's something that can wait, I'm unlikely to try it if it's especially cost prohibitive or really optional.
• I wish that my disability insurance covered TED, so I did not have to work.
• Insurance didn’t cover my eyebrows because they were compounded [GDATF Note: not familiar with this issue]
• Seems the best option Insurance won’t initially cover. Frustrating.
• The NHS declined to pay for it. Waiting for approval was stressful.
• Not sure what will or won't be covered by insurance or Medicare.
• Authorization of requested treatment possibly being denied.
• I’m very glad that my doctor and insurance company considered the eyelid surgery a reconstruction as it improved both the function of my eyes and the disfigurement from TED. I have a different job and insurance plan now, so I’m concerned that so may have difficulty in the future if my symptoms return.
• I am on state insurance and anthem and don’t think either would help me much.
• Preliminary information I’ve been given is I’m not a candidate for additional surgeries and insurance most likely will not cover non-surgical treatments.
• Not sure my symptoms are bad enough to get the insurance company’s approval of anything big.

• Lid surgery is supposedly cosmetic surgery.
• Insurance companies consider some of these treatments as cosmetic and will not cover them. Graves is not cosmetic, though it does harm us cosmetically.
• My eyelids aren’t even after surgery, but my insurance won’t cover because it’s cosmetic not medical.
• I have had surgery twice on one eye and once on the other. I need another surgery on the eye that has had 2 surgeries already. Doctor may consider it cosmetic.
• I would like to have lower lid surgery in addition to the upper lid surgery that I previously had, but I was told the lower lids were 'cosmetic' and not covered by insurance.
• Part of eyelid repair was not covered and considered cosmetic surgery.
• I still have eyelid retraction and uneven eye appearance. I have had lid retraction surgeries twice already. The only options left for me are cosmetic.
• Insurance denied coverage for my last eyelid repair surgery even though my eyelids still do not close, even after 4 surgeries!
• Several [doctors] bluntly told me that my appearance should be of no concern since sight functionality had been restored after surgery. I was taken aback by this level of callous disregard for patient experience and concerns.

Nearly a dozen patients mentioned comorbidities that made treatment for TED more complicated.

• I also have pernicious anemia now.
• I also was diagnosed with scleritis of my R eye in 2002 and was treated with oral steroids for 2-3 years.
• I'm not sure if medicine is worth it [I have] other illnesses.
• I learned that I also had a deviated septum, which had to be fixed during the first orbital decompression surgery.
• I was diagnosed with Sjogren’s about five years ago, so I am not sure what is TED or Sjogren’s. I also am developing cataracts.
• I had a corneal ulcer and virus in the eye.
• I also have Macular Degeneration.
• I have had a kidney removed due to renal cell carcinoma thus cannot take steroids.
• I have inflamed oil glands on my eyelids, which is just another time-consuming health issue.
• I had a combination of thyroid cancer and Graves.

Many participants responded with general comments like, “It really sucks”, “It’s difficult”, “It’s been hell”, or “It’s a horrible disease”. Additional comments:

• Thyroid eye disease is by far the worst thing I have ever had to go through, and I have been through a lot.
• Having TED is more difficult than many people think, and it really puts limitations on doing things I used to enjoy, especially reading.
• It's an uncomfortable and lasting disease that affects your whole life and mental state.
• It's worse than having breast cancer which I had 16 years ago.
• This is a very difficult disease that causes tremendous damage to one's health, ability to be independent, and psychological well-being. As is the case with other autoimmune diseases, it is unpredictable, triggers other, significant health problems, and is always with you.
• I feel most people do not understand my limitations. My limitations have drastically changed my quality of life.
• It has been a very difficult trip. I have done all I can do and accept that this is permanent.
• THAT WHAT MY EYES NEED THERE IS NO TREATMENT FOR THIS DISEASE IN MY COUNTRY ITS LIKE IF I DIED AND BORN AGAIN LIKE A MONSTER IN PAIN.
• Awful disease, much misunderstood in terms of effect on quality of life.
• It is not the worst thing in the world, but I's sure like to get back to normal!
• It has affected all aspects of my life...a very frustrating disease.
• It’s scary and I wish I had better care.
• It has totally changed my life in so many ways.
• It is frustrating and defeating.
• I hate it. Graves’s disease has robbed me of so much in life mentally, it is taking a physical toll on my appearance has destroyed my self-image.
• I just can’t wait to feel like myself again.
• It sucks and I have "lost my pretty. "
• I hate it. I wish I knew why I got it. I was pretty before, I had pretty eyes. And now I’m different looking. My specialist doesn’t care. It’s hard to explain to strangers life before Graves.

Some participants used the narrative section to offer general (not medical) advice to fellow patients, share knowledge gained in hindsight, or to offer general recommendations.

• By changing my diet completely, no gluten, sugar, dairy, soy, caffeine, alcohol and adding in the supplements my body was deficient in, my symptoms improved. [GDATF note: we don’t have specific research on diet/TED.] I also eliminated as much as possible my exposure to environmental toxins and I implemented yoga and meditation to help manage my anxiety and sinking thoughts. My life today is better than it was pre diagnosis. If I could give another patient like me any advice it would be to seek out help from functional medicine too.
• I make sure to get my eyes checked yearly by an ophthalmologist recommended by my eye surgeon. [GDATF note: several participants mentioned the importance of regular eye exams].
• I wish I would have had a thyroidectomy a lot sooner. I feel this helped me more than any other treatment. I also wish I would have been sent to the specialist to get prisms much sooner. The prisms really helped with the double vision and made things more bearable.
• None of my doctors recommended selenium, and I wish that they would give patients advice about taking it and being careful not to take too much. Since I had orbital decompression surgery and strabismus surgery and am very satisfied with the results, I recommend it for Graves patients WHEN INDICATED AND PERFORMED by an experienced, expert oculoplastic and strabismus surgeon.
• I think that social workers or therapists should be connected to endocrinologists' practices and the endocrinologists should recommend them to patients with active disease. Probably the best thing that I did for myself during the 7-ish active years of my disease was to connect with and participate on the Graves Eye Disease Facebook Group. I also think that Zoom group therapy sessions with a professional facilitator would be REALLY helpful and positive for those with active disease and the family members who are providing emotional support to them.
• Cold compresses are the most effective followed by sleeping with head elevated. It is very important to sleep with your head elevated. Also, take a wet washcloth and keep it in the fridge. Use it a few times a day, it's very helpful. When traveling, bring a washcloth and plastic bag and keep asking places for ice and just let the washcloth get cold in the melting ice.
• Keeping your thyroid symptoms under control is most important, not blood tests results. Doctors are very reluctant to prescribe based on symptoms, and only use blood tests results and that is extremely frustrating for me.
• Patients should find optometrists who know how to work with prisms [for double vision] and not accept the diagnosis that they are condemned to never see rightly again.
• With discipline I try to stay in the now. This helps keep my mental thoughts in check.
• Gel eye drops at night are a must. CDB oil and lotions to help with pain and swelling [GDATF note: have not seen credible research on TED and CBD oil]
• DROPS ALL DAY, OINTMENT AT NIGHT - HEATED EYE PAD EVERY MORNING AND TEA TREE OIL LID WIPES.
• I do the best I can with good eye care and using eye drops regularly and eat properly help to avoid anything worse from happening. I've learned to take more rest breaks for my eyes and keep them moist so as to not damage the eyes anymore.
• Learning to live with gratitude and acceptance. Taking care of myself by eating healthy, light exercise and therapy.

Following are comments that didn’t fit into the other categories. A couple of participants mentioned worsening TED after receiving the COVID-19 vaccine. While there are some case studies documenting new onset Graves’ following the COVID vaccine as well as following a COVID infection – and a small study out of Italy noting an increased risk of TED in the month post-vaccination – we don’t currently have robust research on this issue.

• Also have been told I wouldn't be a candidate for Lasik because of TED.
• My eyes were improving for over 4 years. Then received Covid Vaccine and began having trouble with eyes again within two weeks of second vaccination. Trying to find out if there is a connection. Afraid to get boosters if they're going to make eyes worse!
• I was diagnosed with Graves' in the summer of 2021, shortly after receiving two doses of the Pfizer vaccine. I have no family history of thyroid disorders or autoimmune diseases. My endocrinologist said I likely had slight TED, and this was confirmed by an ophthalmologist, though I didn't have any TED symptoms. Given the uncertainties surrounding the vaccine and my Graves' diagnosis, I at first chose not to get a booster dose of the vaccine. However, my employer required it and my doctors refused to give me a medical exemption, so against my better judgment, I got a booster. Two days later my eyelids began swelling. After a visit to the ophthalmologist and some steroids, the situation improved. But now, several months later, I have some pain behind my right eye. I don't know what to think about any of this. I'm afraid my employer will require another dose, in which case it's likely I will be forced to quit my job if my doctors once again refuse to give me a medical exemption.
• I did have surgery for wrinkling of the retinal tissue but was told that was not related to TED.
• Not everyone is either hyper- or hypothyroid. Some patients are also euthyroid. Better terminology would be helpful, so all called it what it is! And lastly, any research into possible links between Graves Ophthalmopathy and Keratoconus would be welcome. I have been lucky to be euthyroid - as per the current values assigned as 'within the normal range'. I would have found guidance helpful to understand what my normal is, because the symptoms I experienced during the 'active' phase, and some before and after, vacillated, sometimes mirroring those of a person who was diagnosed hyperthyroid and sometimes hypothyroid.
• I had a recurrence of Graves in 2021 (after Covid vaccine and Covid infection) and now experiencing severe eyelid retraction in my left eye. I was infected with Covid in January 2022 which made both my Graves and TED worse.  My Graves is slowly improving, but no change in my left eye (retracted eyelid and swelling).
• I have annual ophthalmological exams to track changes.
• I had experienced unexpected family member deaths during the time I was initially diagnosed and feel the stress really contributed to the exacerbation of my symptoms.
• My TRabs are still high nobody knows why. I think the Graves is considered active because of elevated TRabs.
• I may never be able to wear eye makeup (especially mascara) comfortably again.
• I think that doctors overlook the benefit of vision therapy as done by OTs to give practical advice and treatment.
• I wish there were more photos week 1,2,3,4, then monthly to see results of treatment. Just had eyelid repair and had very little idea what to expect - I’m now 4 weeks out. Would like photos shared on onegravesvoice - I would share my own photos to support others.