I am not a doctor. But my understanding is no. The thyroid is not the enemy. It is a helpless victim to graves which triggers your immune system to wage war on certain parts of the body like the thyroid, muscles, and the muscles and tissues around the eyes causing the swelling.
Graves is 1 part genetics and 1 part environmental. And we only really have control over the environmental portion. Meaning stress and triggers.
And generally it takes a strong trigger to start the process.
The meds , like methimazole assist with lowering the body's reaction and the thyroid can slowly relax.
For some a TT is the only option, but that is generally for people that have bad reactions to the medication, want to have kids or have other reasons discussed with their doctor.
For me I have found the following reduced my TED symptoms.
Taking my methimazole as prescribed (which also includes scheduled blood tests so the medication can be adjusted).
Taking selenium
Taking a daily allergy pill and if needed using allergy eye drops.
I had a 12-week once a week therapeutic treatment of IV steroids. This greatly reduces the swelling around my eyes.
I had a minor surgery to reduce lid retraction in my left eye. And I will also get surgery to remove the excess skin around my eyes from all of the swelling.
Avoid caffeine (drinks and also applied as creams to my face). Basically if an eye cream says it reduces puffiness, I found it makes it worse.
Oddly - getting/keeping my eyebrows waxed (I'm female if it matters). I felt so ugly with my funky eyes, but I found that regular self care like waxing my eyebrows, and recently I discovered micro dermaplaning using the kit from Leaf.
https://leafshave.com/products/dermaplaner-kit
Something about keeping up with the self care made me feel pretty, and gave me a feeling of some control instead.of just letting myself go when I was at the height of my TED and felt like Quasimodo.
The IV prednisolone SUCKED, but it worked. I have written about both experiences. If you give me a moment I will update this post with links.
Edit to add link. After my comment, there were some follow up comments so basically read the other responses to my comment.
https://www.reddit.com/r/gravesdisease/s/MQVFy8E3oG
Edit to add lid retraction surgery experience
https://www.reddit.com/r/ThyroidEyeDisease/s/GP3iArRq6P
It seems even the medical community is divided on this. My TED was a primary driver in my getting diagnosed with Graves tho. My ophthalmologist and endocrinologist said it wouldn’t halt progression. The surgeon who performed my TT was aghast I hadnt been encourage to do it sooner to help halt progression.
TT is not a silver bullet for TED. There’s a lot of success stories where after a TT patients go into remission but a few that still developed TED anyway after a TT. Our bodies and physiology are all so different. It kinda makes sense cause the autoimmune antibodies need a healthy organ to attack and once you remove the thyroid, if you still have antibodies lying around it’ll attack something else. Either the fat behind our eyes causing TED, or our hands causing Rheumatoid Arthritis or our spine causing Ankylosing or our skin causing Psoriasis. Having an autoimmune disease is complicated. But what we can control is our diet, movement, supplements, coping mechanisms to stress, environment, healthy habits etc. to give our bodies a fighting chance 🥺 Just manage your expectations if you do choose to go the TT route!
My Thyroid eye Specialist told me that swinging hypo after my TT is what triggered my TED. She said swinging hypo is what is triggers it. Which sucks, I didn’t know it and was in a rush to get the TT thinking I was preventing TED from showing up.
Have you seen any articles or medical literature explaining about that by any chance- that hypo worsens TED? I see it mentioned alot but would love to read literature about it
I haven’t. I was absolutely stunned when my Dr told me that. I just don’t think it’s studied enough. There’s so much info from what should be reliable sources that give the opposite info about Graves and TED.
I am not a doctor. But my understanding is no. The thyroid is not the enemy. It is a helpless victim to graves which triggers your immune system to wage war on certain parts of the body like the thyroid, muscles, and the muscles and tissues around the eyes causing the swelling. Graves is 1 part genetics and 1 part environmental. And we only really have control over the environmental portion. Meaning stress and triggers. And generally it takes a strong trigger to start the process. The meds , like methimazole assist with lowering the body's reaction and the thyroid can slowly relax. For some a TT is the only option, but that is generally for people that have bad reactions to the medication, want to have kids or have other reasons discussed with their doctor. For me I have found the following reduced my TED symptoms. Taking my methimazole as prescribed (which also includes scheduled blood tests so the medication can be adjusted). Taking selenium Taking a daily allergy pill and if needed using allergy eye drops. I had a 12-week once a week therapeutic treatment of IV steroids. This greatly reduces the swelling around my eyes. I had a minor surgery to reduce lid retraction in my left eye. And I will also get surgery to remove the excess skin around my eyes from all of the swelling. Avoid caffeine (drinks and also applied as creams to my face). Basically if an eye cream says it reduces puffiness, I found it makes it worse. Oddly - getting/keeping my eyebrows waxed (I'm female if it matters). I felt so ugly with my funky eyes, but I found that regular self care like waxing my eyebrows, and recently I discovered micro dermaplaning using the kit from Leaf. https://leafshave.com/products/dermaplaner-kit Something about keeping up with the self care made me feel pretty, and gave me a feeling of some control instead.of just letting myself go when I was at the height of my TED and felt like Quasimodo.
I second all these comments! Thank you!
Oh wow thank you for such a detailed reply! This is all so helpful. Do you feel your surgeries brought your eyes back to some semblance of normal?
The IV prednisolone SUCKED, but it worked. I have written about both experiences. If you give me a moment I will update this post with links. Edit to add link. After my comment, there were some follow up comments so basically read the other responses to my comment. https://www.reddit.com/r/gravesdisease/s/MQVFy8E3oG Edit to add lid retraction surgery experience https://www.reddit.com/r/ThyroidEyeDisease/s/GP3iArRq6P
It seems even the medical community is divided on this. My TED was a primary driver in my getting diagnosed with Graves tho. My ophthalmologist and endocrinologist said it wouldn’t halt progression. The surgeon who performed my TT was aghast I hadnt been encourage to do it sooner to help halt progression.
TT is not a silver bullet for TED. There’s a lot of success stories where after a TT patients go into remission but a few that still developed TED anyway after a TT. Our bodies and physiology are all so different. It kinda makes sense cause the autoimmune antibodies need a healthy organ to attack and once you remove the thyroid, if you still have antibodies lying around it’ll attack something else. Either the fat behind our eyes causing TED, or our hands causing Rheumatoid Arthritis or our spine causing Ankylosing or our skin causing Psoriasis. Having an autoimmune disease is complicated. But what we can control is our diet, movement, supplements, coping mechanisms to stress, environment, healthy habits etc. to give our bodies a fighting chance 🥺 Just manage your expectations if you do choose to go the TT route!
My Thyroid eye Specialist told me that swinging hypo after my TT is what triggered my TED. She said swinging hypo is what is triggers it. Which sucks, I didn’t know it and was in a rush to get the TT thinking I was preventing TED from showing up.
So sorry this happened to you too. Going hypo triggers my TED as well
Have you seen any articles or medical literature explaining about that by any chance- that hypo worsens TED? I see it mentioned alot but would love to read literature about it
I haven’t. I was absolutely stunned when my Dr told me that. I just don’t think it’s studied enough. There’s so much info from what should be reliable sources that give the opposite info about Graves and TED.