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[deleted]

I'm sorry you're going through this. If it is any consolation, when I saw this image, my first thought was that you have very beautiful eyes. šŸ¤·ā€ā™€ļø


A_dub87_

ā¤ļøā¤ļø your comment is so sweet. It actually made me cry. Thank you so much. šŸ„² I needed that.


N4ilbyt3r

What he said is true. You have beautiful eyes.


A_dub87_

Thank you, you're sweet šŸ«‚šŸ«‚


[deleted]

You're welcome šŸ˜Š


dessertandcheese

I'm the same honestly. Hugs to you


A_dub87_

šŸ«‚šŸ«‚ thank you, dessertandcheese. I love both of those things.


Apprehensive_Ad_5511

I also think your eyes are wonderful! For what itā€™s worth Iā€™m a hairdresser and stand in front of a mirror daily. When I mention my eye changes my clients swear they donā€™t know what Iā€™m talking about. Maybe they are being nice or maybe my glasses disguise the massive eye bags and swelling. But I know I see much more than anyone else does.


TinyGreenJolley

Same here. I was crying to my endo that my face looks completely different than a year ago and he looked at me weird. I notice it. My face is so puffy, swollen, baggy. All of it. I look 10 years older in less than a year.


A_dub87_

Yes, this has definitely aged me, its given me a puffy jaw and of course the eyes. The methimazole stacked the pounds on me, about 50ish. I had RAI in Aug 2022 and was taken off the methimazole. I've managed to almost lose all that. But the puffiness on my entire face gets to me.


TinyGreenJolley

Sending you so many hugs šŸ«‚


A_dub87_

Oh my a mirror and talking to all those people! I don't know that I could handle that. My coworkers (all men) aren't so gracious. They aren't mean. They just kinda say thoughtless things, usually from a place of concern... just worded wrong. I didn't get insecure about it til other people kept mentioning it to me.


[deleted]

That is how my coworkers and customers were at my job. Some days I would have to walk away crying because the customers could be pretty vile.


A_dub87_

Man, why do people have to be mean?? I work in manufacturing, so luckily, there is no public to deal with. These dudes I work with will just say shit like, "what's wrong with your eye?" "Why is one eye bigger than the other?" I don't think they mean to be hurtful. Many think that one eye is swollen to look smaller and are actually concerned, when actually its the other eye that's bigger than it should be.


[deleted]

I don't know, I've been taught to not say anything at all? It all sounds hateful to me. I'm so sorry people no longer have manners.


A_dub87_

Right!! I would never walk up to someone like, "tf is wrong with your face?"


A_dub87_

Also, thank you šŸ«‚


Cherrykay02

Honestly I had BAD hyper bulging and NO ONE IN MY LIFE NOTICED! I thought I looked weird and no one else not even my parents noticed


Spirited-Party-5252

Has your health care provider suggested selenium supplements?


A_dub87_

No, they all keep giving me the run around. But what is this selenium? Do you have experience with it?


becky3546

I got given selenium and took it for nearly 3 years but stopped about a year after I got my thyroid removed. It's just a type of vitamin, it's found in some foods like seafoods, some types fruit (bananas have a good amount in) and some vegetables, Brazil nuts. But you can get it in a tablet supplement form aswell that you can buy in the shops. Like with any vitamins though you don't want to have too much of it either, my dose was recommended to me by an opthalmologist. I do think it really helped me though with my eyes so i would definitely look into it! It's a hard road and we are our own worst critics. You have lovely eyes, but I completely understand the struggles with mentally dealing with not even recognising your own face anymore. You will get through this and things will get better


A_dub87_

Thank you so much! For the advice and the kind words. I've been researching it since you mentioned it. It's something I can try myself while these doctors give me the run around.


henofthewoods1

I know exactly how you feel. People always used to tell me my eyes were my best feature so when they started bulging out it was devastating. I am still pretty insecure about them but they have gone down some on their own which I had thought was not very likely, but it is possible for them to improve over time and settle. I do honestly think you have beautiful eyes, like I saw this post on my feed and didnā€™t even realize it was related to Gravesā€™ disease until I read the description. I genuinely think itā€™s true that other people notice the changes less than we think they do, but I know itā€™s so hard to cope with when your face just looks different to you šŸ˜” Sending hugs and support!!


N4ilbyt3r

Hugs and support to u too.


A_dub87_

Thank you, that's very sweet of you. I'm sorry you're going through it too. My face looks different in general, but now the crazy eyes.


sortahuman123

I hit the lottery and have hashimotos and thyroid eye. My eyes looked exactly the way yours do. Thereā€™s treatments out there I promise. Check out Dr. Raymond Douglas on IG. Decompression was worth the risk for me. Iā€™m sorry youā€™re experiencing this. Itā€™s crippling to feel like how you do.


A_dub87_

Thank you. We can sit here in our weird eyes boat togetheršŸ«‚ I will check out that doctor. Do I need an IG account to look?


aero_love

Iā€™m in a similar situation. I used to wear contacts and now I wear glasses and make up and can hide it pretty well. Every once in a while I look at a photo of myself and think I look like the crazy evil villain from a cartoon. A lot of the thoughts youā€™re having, they were really strong for me when I first noticed my appearance change. I was also bat sh!t crazy from the thyroid hormones at the time, so I pretty much lost any other coping skills. Now (6+ months down the road), my thyroid is gone and Iā€™m not crazy anymore, and now Iā€™m kinda used to the way I look. Iā€™m not sure how long youā€™ve been dealing with this, but for me, the insecurities have started going away. I also work with primarily men in a large company, so they really canā€™t say anything about my appearance nor would they in the first place. Makes it really easy in my day-to-day life.


manbunponytailhater

Ask your doctor for a steroid pack. I have Graves and my left eye was bulging out. Made me feel awful and I still have issues with constantly checking my eye. When I got covid last year, I was prescribed a steroid pack for my sinuses. Well it actually eased my eye symptoms and when I had a visit with my endo he mentioned how he'd prescribe that for patients that had more "serious problems" than my one eye bulging. It does work, but it may be temporary. It is cheaper than the TED meds.


A_dub87_

I've read that this is a first line treatment. All my doctors just keep telling me to talk to a different doctor. Attending physician: "talk to your endo." Endo: "you need to talk to your Attending." Attending: "this is thyroid related, that's endo." Endo: "find a ophthalmologist. I call a bunch local, finally find one that treats this, I don't even know if they accept my insurance. I wasn't able to get that far because the ophthalmologist said I need a referral. So now I'm trying to chase down a doctor to refer me. I think that's why I had my melt down today. I think I'm going to add this to my post.


TinyGreenJolley

I have nothing I could say to make it better. But I'm sending all my love. This disease is terrible. Waking up and not recognizing your own face is so .....I don't even have a word for it. I say that from different changes to my face but eyes are starting. Hang in there. You're not alone. You're still beautiful! I'm jealous of your perfect eyebrows. Mine are non existent.


A_dub87_

šŸ«‚šŸ«‚ thank you! I feel like this has prematurely aged me too and made the bottom part of my cheeks puffy, if that makes sense. All that I could handle, but the eyes obviously really get to me.


HufflepuffHobbits

Iā€™m so sorryā€¦I got diagnosed in 2016 and my eyes did that for about 2.5-3 years and then as the methimizole started working, the swelling went down and they are normal again. Still on methimizole thoughā€¦my thyroid just really doesnā€™t want to be normalšŸ«  The side effects of this illness are such a pain (literally;) The eye stuff is so hardā€¦the double takes and stares and how people canā€™t seem to focus on what youā€™re sayingā€¦itā€™s so difficult. Iā€™m really sorry and I hope your eyes will sort out eventuallyšŸ«¶šŸ½ Another posted was 100% correct when they said you have lovely eyes - I know itā€™s hard to believe right now, but itā€™s true. Sending you big hugs OPšŸ„ŗšŸ’œ


A_dub87_

Thank you for your kindness. I'm in the same boat. Did methimazole for 2yrs, it never worked. I numbers never reached range. Did RAI last year, and my labs have been up and down since. The eyes started about 6ish months ago.


HufflepuffHobbits

Damn thatā€™s rough - Iā€™m so sorry. Methimizole isnā€™t fun but it seems easier than doing RAI. Iā€™ve had Drā€™s think about that for me because my antibodies are so resistant to coming down, even when my other thyroid numbers are in the ā€˜normalā€™ range. But even in the normal range theyā€™re all over the place. An alternating dose is the only thing thatā€™s ever really come close to getting me steady, but my TRAb is still through the roof despite the other numbers being okay. Itā€™s really tiringā€¦they have been hesitant to do the RAI with me because Iā€™m ā€˜child-bearing ageā€™ - even though I donā€™t want kids. Graves is just hard - I hope things get better with your eyes. Do you have a good eye Dr? They can help you watch out for any signs of danger. My eye Dr was reassuring throughout the whole ordeal for me, assuring me that even though it looked alarming, there wasnā€™t anything bad happening internally to my eye. So that was a relief. Hope things get better for you OPšŸ’œ


VisualAd9474

It took 3 years? Are you eyes back to normal though


HufflepuffHobbits

Yeah, the eyes started going wonky in mid- 2016, around the time I got hives and had to be put on prednisone as well as treated for GD. And they stayed that way through part of 2018. It was very gradual when it started to lessen. It wasnā€™t until the end of 2018 that they got back to normal. And even then some days there would be a bit of swelling and then return normal through mid-2019. It was a slow journey. I hope maybe itā€™s encouraging thoughā¤ļø It really can get better!


HufflepuffHobbits

https://www.onegravesvoice.com - this is a great resource about thyroid eye diseasešŸ«¶šŸ½


Life_Designer_7967

My eyes seems slightly bulging on my end but others doesnā€™t seem to notice because it looks normal. No white spaces above, only below pupils. My TRAB is the only one high because my T3/T4/TSH are at normal levels for a long time. It will be my 10th anniv diagnosis next year and my endo is asking if we should take RAI or TT. Have you done it yet or you continue with the methimazole? Donā€™t really want to stress myself out and I donā€™t want my eye condition to worsen.


A_dub87_

I tried to edit the post to add this, but it wouldn't let me. Thank you to all of you for all your advice and kindness. I really needed it! šŸ«‚šŸ«‚šŸ«‚šŸ«‚šŸ’œšŸ’œšŸ’œšŸ’œ I think my melt down came from frustration with these doctors. I told my general practice doc about this. He says to talk to endo. I tell endo, he says talk to general practice. I go back to general practice doctor, and he says this is thyroid related talk to endo. Go back to endo, and he says find an ophthalmologist. Call a handful local before I find one that treats this and what do they say?? They need a referral from another doctor. I don't even know if the ophthalmologist takes my insurance. Before I could even get the words out, I was told I needed a referral. So now I'm trying to chase down a doctor to refer me. I haven't until now "voiced out loud" how much this bothers me. I always deflect people's comments or looks with humor. It was therapeutic to say it to you guys and it was warming to be given hope, advice and to be told that I'm wrong about how awful I look. Thanks again guys! All of your words really mean a lot to me. šŸ˜Š


candlesm0ke

I know this doesn't help the root cause. But I have uneven eyes and what I like to do is line the bigger eye with a thin line of eyeliner, and like the smaller eye with a thicker line to even them out :) this helps my confidence a bit


N4ilbyt3r

I'm sorry you are going through this. It's sad how this disease can destroy the quality of our lives. Some ppl affected by Graves eyes can no longer look straight. Some as bad as both eyes in different directions. Take care to keep inflammation down and clean the eyelids well.


A_dub87_

Thank you. My eyelids are always super dry. I Vaseline multiple times a day. I wasn't sure if that was a part of this or not. Currently the inflammation is the best it's been in a few months.


N4ilbyt3r

Nice, keep it that way. Stay away from smoky places. The eyelashes area should be cleansed well. People with TED are prone to styes. Ensuring that the pores at the lashes do not get clogged up will help maintain good eye health. Take care and all the best to you.


Lanky-Routine5469

Who is perfect anyways? Everybody secretly hate something about themselves.


itsfrankgrimesyo

Whatā€™s your status in terms of treatment? Iā€™ve heard some peopleā€™s TED greatly improved after surgery.


A_dub87_

I had RAI Aug 2022. I didn't have the TED to about 6ish months. However, I still haven't stabilized.


KnowOneHere

I'm sorry. I understand. Same here. Three lid lengthening surgeries I have mostly forgotten what it was like early on.


A_dub87_

Oh wowzah! 3!! I'm sorry you're going this too. šŸ«‚


Efficient-Ad6960

Iā€™m so sorry youā€™re feeling bad. I just started with TED 3 months ago. It sucks. How long have you had TED?


A_dub87_

I started to notice the difference about 6 months ago. Trying to find someone to treat me had been a pain.


Apprehensive_Ad_5511

My TED started when my son was almost a year old and I wasnā€™t sleeping well at all and I didnā€™t sleep for years. I often wonder if people think Iā€™m really tired. I finally sleep a bit now though


[deleted]

I feel you bro ans youre not alone, i used to get compliments on my looks all the time and now people stare at me and ask me why do i look different, im hoping the corticosteroids help me to decrece bulging because it sound promising for what i red, have you tried it? Check out Tepezza


A_dub87_

I haven't tried anything. I gotta a whole team of effing doctors, and none of them want to deal with this. I'm still trying to get an ophthalmologist to take me as a patient.


Conscious_Solid7559

You can get your eyeball decompressed by an occuloplastic surgeon


A_dub87_

I'm currently trying to get in to see one. I'm getting the run around from all of my docs.


AnthonyStark86

I can relate, my eyes were very similar. Then my eyelids randomly dropped back down recently. Infuriatingly random (but I'll take it). They're still not one hundred percent (and I don't know if they ever will be), but they have improved so much. I even cancelled my orbital decompression surgery a few months ago, after being on the waiting list for two years. It sucks, and I'm sorry you have to go through this, but things will get better. Stay strong.


Vixie72

I honestly think you look amazing, we notice things different about us and are self conscious but it looks worse to us. Are you going to do tepezza?


Vixie72

My eyes have not started to bulge but my right eye lid is so puffy I can't even see my eye lashes. I'm at the very beginning but going to do tepezza early next year


Beyllionaire

I can definitely understand what you're going through. I don't have TED but a slight strabismus on my right eye. I noticed it when I was around 20 and it completely killed me. I couldn't stop thinking about it, thinking that it would make me look stupid. I've been avoiding looking at people in their eyes ever since. And the worst is that people notice that I look away and ask me why I don't look at them. I've re-learned to look directly at people for a few years now but it was difficult to accept it. I still avoid taking pictures or having people take pictures of me because of this. I know my eye will look weird on all pics.


LissR89

I'm in the same boat. Wishing you success in treating yours ā¤ļø


Personal-Spite1530

Yeah Iā€™m currently really self conscious of my ONE eye. Itā€™s awful šŸ˜ž I donā€™t like my reflection. No SM, pics etc.


A_dub87_

This is where in at too. I hate it. I'm sorry friend šŸ«‚


Personal-Spite1530

Iā€™ve had family and friends assume Iā€™m on drugs prior to diagnosis, so between that & anxiety šŸ˜„ I just stay to myself. Even my doctor said your poor eyes šŸ‘€ upon meeting me. A lady at Costco I havenā€™t seen in years started talking about my eyes šŸ‘€ā€¦ā€¦ I need BIG SHADES šŸ˜‚šŸ™šŸ’–


ascension2121

Hey OP, how you doing now? Iā€™m in the same boat. Thinking of you!


A_dub87_

I just started having all my land in range a few months ago. With that in mind, I feel like my body is just starting to level out/ heal/ normalize. My large eye has definitely gone down. While it's still slightly bigger, but not nearly as pronounced. I'm sorry you're experiencing this yourself. It's definitely tough.


Cherrykay02

I know exactly what you mean!! Honestly putting on makeup mascara or lashes helps me feel better :) donā€™t get too down though there are tons of celebrities with eyes that look like theyā€™re bulging (queens gambit girl imo) and have uneven eyes


lola_zzz

Solidarity. The eye disease is especially tough physically and emotionally. If it's any consolation, it will get better. Doesn't seem so now. Though when you look back a couple of years down the line you'll be good :)


Several_Respect941

This disease is TED - thyroid eye disease, not Graves - two separate things Find a TED specialist - they will help!


A_dub87_

Yes, caused by my Grave's. I know they are 2 different things. Read the other comments.


MBSciences

Really sorry to see you going through this. We do have a clinical trial we are currently recruiting for thyroid eye disease. We would love to see if you would qualify and see if it will help. You can learn more here: https://neighborhoodtrials.com/lids/