I just found you. I would love to follow you too since I just got diagnosed with TED in February 2023. Just like you, one of my eyes is bigger due to eyelid retraction. I think I am having some double vision too, but when I focus my energy it goes away. I am nervous about this disease.
TED is strange. Everyone has there own journey and things play out differently for all of us. I hope things work out not so bad for you. One thing you should consider that isn’t obvious is clinical trials. There are some new treatments coming. I’m not saying that this is the right direction for you, but keep them in mind. Since I was quickly put on Tepezza, now I’m not eligible for other trials.
Thank you for your videos on your TED experience. I was diagnosed with TED last year around the same time I had a melanoma diagnosis. My TED specialist said the cancer probably activated the Graves Disease which I've had since 2000. Over the years since then, I've had various minor issues with my eyes, but never connected it to Graves Ophthalmology, or TED and it's now referenced. Thanks for the tip about the new drug. I was going to do Tepezza if it was approved, but my TED doctor told me about the hearing loss issues. I had a severe case of COVID-19 in 2020 in which I had a similar, but temporary hearing loss that the Tepezza developers refer to. I do not want to risk permanent damage. Since my cancer surgery in December 2022, I'm now undergoing immunotherapy. I also had concerns about Tepezza infusions on top of Keytruda - though the doctors said there weren't any issues. There are to me, because some of the side effects are the same. Didn't want to double up on that. So I'm left with doing nothing for my TED. I think my stage is mild; I have chemosis, double vision, and minor protraction in the left eye. I can manage the double vision probably like you do, by head turns, and I close the affected eye (right eye). Anyway, I've found your videos helpful and I really appreciate hearing about your experiences with this disease.
I’d probably make the same decision as you. You gotta be your own doctor and know your situation. Since I went through Tepezza once without hearing issues and the Viridian drug is probably 2 years out best case and I’m concerned about all the scar tissue building up I would do another round of Tepezza now. Good luck on your journey. I wish you the best.
Have you discussed surgical options with your Dr.’s to correct the double vision? Mine is so bad I can’t do most things in the workshop safely or efficiently. I’m almost done with Tepezza and it hasn’t helped me at all. Decompression surgery seems likely to help, but I’m not sure if it’s a long-term fix either. I’ll learn more at my next appointment at the end of Feb.
We haven’t talked about surgery yet. I believe the idea is to let things progress until I’m not active anymore and then consider surgery. I haven’t pushed the idea of surgery since until recently the DV problem wasn’t bad enough to be desperate. On Tepezza, my DV didn’t start to get better till after the 7th infusion, so maybe you have some improvement coming.
I’ve taken it in the past. I never got the impression it did much. But since you mentioned it and I have plenty, I will start again this morning and see if it helps when my eye is really feeling bad. Thanks.
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Thank you for doing the research for us TED folks. I too have double vision now. I've had TED since April 2021.
I just found you. I would love to follow you too since I just got diagnosed with TED in February 2023. Just like you, one of my eyes is bigger due to eyelid retraction. I think I am having some double vision too, but when I focus my energy it goes away. I am nervous about this disease.
TED is strange. Everyone has there own journey and things play out differently for all of us. I hope things work out not so bad for you. One thing you should consider that isn’t obvious is clinical trials. There are some new treatments coming. I’m not saying that this is the right direction for you, but keep them in mind. Since I was quickly put on Tepezza, now I’m not eligible for other trials.
Thank you for your videos on your TED experience. I was diagnosed with TED last year around the same time I had a melanoma diagnosis. My TED specialist said the cancer probably activated the Graves Disease which I've had since 2000. Over the years since then, I've had various minor issues with my eyes, but never connected it to Graves Ophthalmology, or TED and it's now referenced. Thanks for the tip about the new drug. I was going to do Tepezza if it was approved, but my TED doctor told me about the hearing loss issues. I had a severe case of COVID-19 in 2020 in which I had a similar, but temporary hearing loss that the Tepezza developers refer to. I do not want to risk permanent damage. Since my cancer surgery in December 2022, I'm now undergoing immunotherapy. I also had concerns about Tepezza infusions on top of Keytruda - though the doctors said there weren't any issues. There are to me, because some of the side effects are the same. Didn't want to double up on that. So I'm left with doing nothing for my TED. I think my stage is mild; I have chemosis, double vision, and minor protraction in the left eye. I can manage the double vision probably like you do, by head turns, and I close the affected eye (right eye). Anyway, I've found your videos helpful and I really appreciate hearing about your experiences with this disease.
I’d probably make the same decision as you. You gotta be your own doctor and know your situation. Since I went through Tepezza once without hearing issues and the Viridian drug is probably 2 years out best case and I’m concerned about all the scar tissue building up I would do another round of Tepezza now. Good luck on your journey. I wish you the best.
Have you discussed surgical options with your Dr.’s to correct the double vision? Mine is so bad I can’t do most things in the workshop safely or efficiently. I’m almost done with Tepezza and it hasn’t helped me at all. Decompression surgery seems likely to help, but I’m not sure if it’s a long-term fix either. I’ll learn more at my next appointment at the end of Feb.
We haven’t talked about surgery yet. I believe the idea is to let things progress until I’m not active anymore and then consider surgery. I haven’t pushed the idea of surgery since until recently the DV problem wasn’t bad enough to be desperate. On Tepezza, my DV didn’t start to get better till after the 7th infusion, so maybe you have some improvement coming.
Do you take selenium?
I’ve taken it in the past. I never got the impression it did much. But since you mentioned it and I have plenty, I will start again this morning and see if it helps when my eye is really feeling bad. Thanks.
@@rickburns4572 My endocrinologist said to take 200mg a day. She said there’s research backing it. So it can’t hurt it’s an essential nutrient.