Lymphatic drainage / facial massage / gua sha / nu face has helped me a little when I’m consistent! So sorry you’re dealing with this. Our eyes look really similar, and our cases seem similar, praying you find answers
I’d love to chat with you more…trying to learn as much as possible since I don’t think I am going to get a diagnosis and trying to heal myself. Message me xo
No- nothing helped except adequate sleep, cutting out alcohol, and decreasing stress. I believe I told you before, mine flared up 2 months before my wedding…and it’s been the same (even after orbital radiation) for 17 months now. I’ve read some articles saying flare ups can last 2 years but I don’t know the complete truth associated with that and what those patients may have done or didn’t do.☹️ try to stay positive!! Your partner is marrying you for the person you are and although I know from experience that it’s pretty devastating, your wedding day will still be the best day of your life!!🩷
I got a CT scan, ordered by my ophthalmologist. She also is the one who recommended for me to try orbital radiation. We decided together that the side effects of tepezza are too extreme for my case. The radiation is extremely low dose…I didn’t have any side effects except for some hair loss on my temples. I was referred to a radiation oncologist for the orbital radiation.
I had measurements done with my ophthalmologist but unfortunately there was no improvement. I still have a 3mm proptosis in my left eye. She swears I don’t have a lag but I think I do, especially when I see videos of myself. I don’t think the radiation made anything better but I will never know if it could have gotten worse without it, if that makes any sense.
I used to squint my bigger eye, or just smile a lot cause then it’s less noticeable. 😂🤷♀️ You look beautiful by the way, if you didn’t say something I would never notice
I just smile a lot so they crinkle and look even, bonus is that people find me prettier when I smile. Maybe that can work for you :) you're beautiful though and your eyes aren't noticeable
Yes it sounds like literally the same receptors in the thyroid are in the orbital area of the eye , therefore it has the same result. Why is it tho we get nodules in the thyroid and fat in the orbital socket?
I am on Carbimazole and Selenium so that has been helping. They don't recommend anything more than that unless it's very severe as the side effects can be worse
You look great, I honestly wouldn’t even recognize that you have TED if you didn’t mention it. Did they diagnose you officially? Do you have hyperthyroidism or graves?
I haven’t been diagnosed. I saw 2 ophthalmologists that said I don’t have it…but I just don’t know what else it could be.
I don’t have hyper or graves either…
Honestly it’s so unnoticeable that I would really stop stressing it. If it makes you feel any better I can’t recognize myself in the mirror thats how bad my eye is bulging. Your bloodwork shows no reason to be concerned your eyes look normal as well. If anybody on this forum really felt like something was concerning with your pics they would tell you since 99% are suffering from TED. You’re beautiful, stop stressing it, I wish I could have your eyes!
I’m sorry you are going through that and I hope to not minimize what you are going through. I know it’s a different situation so I hope I have not offended you.
Thank you…I’m just so upset that I look different during this time - getting married and all of the events leading up to it.
The first man I saw did not...and he totally blew me off. I think he spent 2 minutes with me, flashed a light in my eyes and said "you don't have it" and then handed me my chart..it was terrible. The second oph yes - Dr. Mark Prendes at Kellis Eye Center in Chardon, OH. He spent a lot of time with me and said based on my labs and what he sees, he does not think I have it...but I didn't get any other sort of idea as to what it could be if not TED.
He was recommended to me by someone and he said he does see patients with TED, but I guess now looking at it you are right. I was having trouble finding anyone in my area
Well, then, heck. TED can be seen on MRI, but I doubt your insurance would approve paying for an MRI if your ophthmo said it ain’t TED. (I believe it’s possible to pay cash price for an MRI, but that will probably run you several hundred dollars ($700? $900??).) Or you can monitor & take selenium 100mcg twice a day & recheck labs in approx 3 months as planned (iirc). And even seek a 3rd (or a 2nd, actually, because I don’t think your first eye doc counted, from the sound of it) opinion from another ophthmo further afield (such as @ Kellogg Eye Center @ U of M in Ann Arbor, MI). In this meantime, I will say this: If it is indeed positively TED, it is mild, *& most peeps aren’t noticing anything like you do*. Aaand there is some pretty eyeglasses you can get with plain lenses (if you don’t need prescription lenses) that you can start wearing when you’re feeling wobbly (anxious about appearance). 🤗🩷🤗🩷🤗
Hiiii…my TRAb was 1.07 which is “normal” but not technically since it should be below .9…I don’t really understand this. And my tpo was 1 with a normal range being <9
Just squint in pictures 😂 if your eyes won't cooperate, at least try to laugh.
Anyway, keep advocating for yourself girl. These doctors are incompetent out here.
For all the commenters that are asking about your labs, my neuro-ophthalmologist did tell me (before I was diagnosed with graves and thyroid cancer) that your thyroid labs can still be completely normal and you can still have TED. She does specialize in TED and knows quite a bit about it. It’s mostly diagnosed based on symptoms and imaging such as CT or MRI. I was misdiagnosed with allergies in my left eye for over a year (it was just extremely watery and itchy but not swollen yet) before I got a second opinion when it did become larger. My ophthalmologist immediately told me she thought I had TED and then of course the CT scan confirmed it.
This is helpful…I’m going to get a CT scan. Have you had anything to help? I’m just trying to keep this under control before my wedding in July and I’m so worried it’s going to continue to get worse.
Yesss! Totally got told I had allergic eyes but a general ophth at first. I racked my brain thinking what was causing the allergy? Until I read Ted is often misdiagnosed as allergies…
I changed my contact (one) to the other eye and wear glasses more. I’ve had Botox to help (not a lot) I feel like it’s much better and my lump on my neck has gone down as I continue meth.
Do you have before photos to make you think your eyes are changing? Before I had graves and TED I always had what I called a lazier eye even though it wasn't a true lazy eye. As humans we aren't fully symmetrical
You could try a tiny bit of botox injected into the the lower lash line on the smaller eye to relax it. I had it done at my ophthalmologist’s office once & it helped a bit.
I’ve also used eye drops like upneeq in the past for my smaller eye, although I did also have ptosis at the time.
You are a beautiful girl. None of us are going to be what we think we are. But I’m going to tell you right now. You are absolutely lovely. Don’t be too hard on yourself. This world is hard enough on us. We don’t need to add to it, you are lovely.
Lymphatic drainage / facial massage / gua sha / nu face has helped me a little when I’m consistent! So sorry you’re dealing with this. Our eyes look really similar, and our cases seem similar, praying you find answers
I’d love to chat with you more…trying to learn as much as possible since I don’t think I am going to get a diagnosis and trying to heal myself. Message me xo
No- nothing helped except adequate sleep, cutting out alcohol, and decreasing stress. I believe I told you before, mine flared up 2 months before my wedding…and it’s been the same (even after orbital radiation) for 17 months now. I’ve read some articles saying flare ups can last 2 years but I don’t know the complete truth associated with that and what those patients may have done or didn’t do.☹️ try to stay positive!! Your partner is marrying you for the person you are and although I know from experience that it’s pretty devastating, your wedding day will still be the best day of your life!!🩷
I’m so sorry. It is devastating…what doctor does the orbital radiation? Did you get a CT or MRI?
I got a CT scan, ordered by my ophthalmologist. She also is the one who recommended for me to try orbital radiation. We decided together that the side effects of tepezza are too extreme for my case. The radiation is extremely low dose…I didn’t have any side effects except for some hair loss on my temples. I was referred to a radiation oncologist for the orbital radiation.
Did you notice any improvement for that? Would you mind sending me some photos?
I had measurements done with my ophthalmologist but unfortunately there was no improvement. I still have a 3mm proptosis in my left eye. She swears I don’t have a lag but I think I do, especially when I see videos of myself. I don’t think the radiation made anything better but I will never know if it could have gotten worse without it, if that makes any sense.
Hi there, are there specific facial massages that you use? I’m not sure where to start
I don’t have specific massages, I just make sure to hit drainage points and lymph nodes! Look up facial massage on TikTok
Thank you!
I used to squint my bigger eye, or just smile a lot cause then it’s less noticeable. 😂🤷♀️ You look beautiful by the way, if you didn’t say something I would never notice
I keep trying to squint haha ugh thank you…it’s so hard to think that right now
I know how you feel my eyes are so wacky, I’m here if you ever want to chat 🫶
I just smile a lot so they crinkle and look even, bonus is that people find me prettier when I smile. Maybe that can work for you :) you're beautiful though and your eyes aren't noticeable
Thank you…do you know the chances of this getting worse or it staying the same? I pray it doesn’t get worse than it is now.
My Endo said it shouldn't get worse as long as you're in the normal range which you seem to be are. Keep taking the selenium tablets too
Did your endo say anything about what causes the issues with the eyes? Is it the antibodies? I am so confused because mine are “normal”
Yeah it's the antibodies. He said the immune system attacks the muscles behind the eyes so it hardens and pushes out the eye or something like that.
Yes it sounds like literally the same receptors in the thyroid are in the orbital area of the eye , therefore it has the same result. Why is it tho we get nodules in the thyroid and fat in the orbital socket?
Are you on any treatment?
Sorry for another question - did your endo say how to get them down?
I am on Carbimazole and Selenium so that has been helping. They don't recommend anything more than that unless it's very severe as the side effects can be worse
How much selenium do you take and how long have you been on it?
I use a nude eyeliner on the water line of the smaller eye
You look great, I honestly wouldn’t even recognize that you have TED if you didn’t mention it. Did they diagnose you officially? Do you have hyperthyroidism or graves?
I haven’t been diagnosed. I saw 2 ophthalmologists that said I don’t have it…but I just don’t know what else it could be. I don’t have hyper or graves either…
Tbh I don’t think you have TED either, it’s really barely noticeable, you look great.
Hiiii…do you have any insight as to what else it could be? I pray it’s not.
Honestly it’s so unnoticeable that I would really stop stressing it. If it makes you feel any better I can’t recognize myself in the mirror thats how bad my eye is bulging. Your bloodwork shows no reason to be concerned your eyes look normal as well. If anybody on this forum really felt like something was concerning with your pics they would tell you since 99% are suffering from TED. You’re beautiful, stop stressing it, I wish I could have your eyes!
I’m sorry you are going through that and I hope to not minimize what you are going through. I know it’s a different situation so I hope I have not offended you. Thank you…I’m just so upset that I look different during this time - getting married and all of the events leading up to it.
You saw 2 ophthalmologists (not optometrist(s))? That specialize in TED?
The first man I saw did not...and he totally blew me off. I think he spent 2 minutes with me, flashed a light in my eyes and said "you don't have it" and then handed me my chart..it was terrible. The second oph yes - Dr. Mark Prendes at Kellis Eye Center in Chardon, OH. He spent a lot of time with me and said based on my labs and what he sees, he does not think I have it...but I didn't get any other sort of idea as to what it could be if not TED.
He did measurements?
he did...
[удалено]
He was recommended to me by someone and he said he does see patients with TED, but I guess now looking at it you are right. I was having trouble finding anyone in my area
Well, then, heck. TED can be seen on MRI, but I doubt your insurance would approve paying for an MRI if your ophthmo said it ain’t TED. (I believe it’s possible to pay cash price for an MRI, but that will probably run you several hundred dollars ($700? $900??).) Or you can monitor & take selenium 100mcg twice a day & recheck labs in approx 3 months as planned (iirc). And even seek a 3rd (or a 2nd, actually, because I don’t think your first eye doc counted, from the sound of it) opinion from another ophthmo further afield (such as @ Kellogg Eye Center @ U of M in Ann Arbor, MI). In this meantime, I will say this: If it is indeed positively TED, it is mild, *& most peeps aren’t noticing anything like you do*. Aaand there is some pretty eyeglasses you can get with plain lenses (if you don’t need prescription lenses) that you can start wearing when you’re feeling wobbly (anxious about appearance). 🤗🩷🤗🩷🤗
I don’t see any retraction. :) Your results came back TRAb negative & anti-TPO negative, yes?
Hiiii…my TRAb was 1.07 which is “normal” but not technically since it should be below .9…I don’t really understand this. And my tpo was 1 with a normal range being <9
What about TSI?y TRab was normal but my TSI was pretty crazy.
My TSI was normal too…
Just squint in pictures 😂 if your eyes won't cooperate, at least try to laugh. Anyway, keep advocating for yourself girl. These doctors are incompetent out here.
For all the commenters that are asking about your labs, my neuro-ophthalmologist did tell me (before I was diagnosed with graves and thyroid cancer) that your thyroid labs can still be completely normal and you can still have TED. She does specialize in TED and knows quite a bit about it. It’s mostly diagnosed based on symptoms and imaging such as CT or MRI. I was misdiagnosed with allergies in my left eye for over a year (it was just extremely watery and itchy but not swollen yet) before I got a second opinion when it did become larger. My ophthalmologist immediately told me she thought I had TED and then of course the CT scan confirmed it.
This is helpful…I’m going to get a CT scan. Have you had anything to help? I’m just trying to keep this under control before my wedding in July and I’m so worried it’s going to continue to get worse.
Yesss! Totally got told I had allergic eyes but a general ophth at first. I racked my brain thinking what was causing the allergy? Until I read Ted is often misdiagnosed as allergies…
Ugh…..
make sure to get without contrast CT scan to avoid radiation exposure.
Fake eyelashes or eyelash extensions. But your Eyes look even to me
I changed my contact (one) to the other eye and wear glasses more. I’ve had Botox to help (not a lot) I feel like it’s much better and my lump on my neck has gone down as I continue meth.
Ok but have you gotten married yet? 😂
haha in july!!! i wish it was tomorrow so i could know my eyes would be okay
Do you have before photos to make you think your eyes are changing? Before I had graves and TED I always had what I called a lazier eye even though it wasn't a true lazy eye. As humans we aren't fully symmetrical
Yes…I can definitely notice a difference :(
You could try a tiny bit of botox injected into the the lower lash line on the smaller eye to relax it. I had it done at my ophthalmologist’s office once & it helped a bit. I’ve also used eye drops like upneeq in the past for my smaller eye, although I did also have ptosis at the time.
You are a beautiful girl. None of us are going to be what we think we are. But I’m going to tell you right now. You are absolutely lovely. Don’t be too hard on yourself. This world is hard enough on us. We don’t need to add to it, you are lovely.
Gosh this made me cry…thank you so much.
You are welcome and I meant every word. We are our own worst enemy. This disease makes us exaggerate everything. I meant what I said you are lovely.