I Have Thyroid Eye Disease

So last June (June 2017) I had my thyroid removed. One doctor told me it would be at least a year before I’d feel normal again. Another said that I might have to get used to a ‘new normal’. Have you heard of this? This ‘new normal’. I’m not a fan. But that’s a story for another day. Today is all about Thyroid Eye Disease.

It’s not quite a full year, but I’ve already noticed some positives to life without a thyroid. My heart palpitations have stopped almost completely and I’m feeling less anxious. Best of all, I was able to move forward with my eye surgery. I have Thyroid Eye Disease and was advised not to address it until my thyroid was gone.

If you have TED, you can relate to the dryness, sensitivity to light, and the embarrassment of your eyes bulging out of your head. I think the worst thing is the RSF; Resting Scared Face. The name came to me while I was taking a Yoga class.

About a month after thyroid surgery I decided I was going to start some lite exercise. I’ve always wanted to try Yoga so I signed up at one of those places where you get the first week free. (I need to preface this by telling you that I wear glasses. Not only for my astigmatism, but also because when they’re on, it’s really hard tell how bulgy my eyes are. I take them off when I work out though.) During my first class I was concentrating on mimicking the instructor’s movement, when she looked up at me. She bust out laughing and said, ‘Oh you poor thing you look terrified! Yoga is nothing to be afraid of, you don’t have to look so scared!’ (Um yeah, I don’t really have a choice.) The instructor at the second class was more subtle. She pulled me aside as I was leaving and asked me if I was OK. When I answered that I was she said, ‘Oh OK because you look really nervous.’ Anyways, I’ve decided to skip Yoga until I can manage to look as relaxed as it makes me feel.

They did both of my lids together in September. Then in January, they did a bit more on my left eye. You can see my before and after in the photo above. I promise neither of the photos have been touched up. It’s just the place and the lighting that’s different in each of them. You can see my eyes are still puffy because Graves loves inflammation. But they’re getting there. And I’m so excited to see some eyelashes again!

The surgery wasn’t too horrible. It was done as an outpatient so I didn’t have to stay overnight. I took four days off of work the first time and three the second. Then I wore sunglasses at the office to hide the swelling. I work on a computer most of the day so the sunglasses also helped with the glare. I’ve noticed some improvement with dryness and light sensitivity. My left eye still gets dryer than my right though, and I’m still using artificial tears a lot.

If lid retraction surgery is in your future, I have a few tips for you!

  • Always follow your doctor’s instructions regardless of what you read on the internet.
  • Get a box of 4×4 sterile gauze and a roll of paper tape to have on hand. You’ll need these to apply direct pressure if one or both lids start bleeding post-operative. This happened to me. My husband had to make a panic run to Walgreens because we didn’t have what we needed. I was totally fine. But the whole experience was the stuff of horror movies, so you’ll do yourself a favor by being ready just in case.
  • Have several bags of frozen peas in the freezer to switch off for icing your eyes.
  • Get some books on tape. Reading and watching TV will be really uncomfortable for a few days.

I went back and forth over posting my before and after pics as the feature image of this post. But then I decided to be brave. It’s who I am now and there’s nothing I can do about it. It’s not fun, but it could be worse. We just have to keep telling ourselves that. As bad as Graves is, things could always be worse. Be brave my fellow Gravesters!

If you would like to chat with other Gravesters about their experiences with Graves and Thyroid Eye Disease, please join my new FACEBOOK GROUP.

This is just my experience with Thyroid Eye Disease. If you’d like a more technical explanation of things you can find that here: https://www.thyroid.org/graves-eye-disease/

 


2 thoughts on “I Have Thyroid Eye Disease

  1. I have Graves Disease as well, diagnosed 15 years ago, and attacked my eyes.

    I have been suffering for years and and relate to the comments, “you look nervous”, or “are you ok?, you look terrified”.

    I hide my eyes as much as possible and avoid pictures as much as possible.

    I am finally going to brave eye lid surgery and am worried about finding the right surgeon.

    1. Hi Julia, Eyelid surgery has made a big difference for me! I understand your concern though about finding the right surgeon. My surgeon is also my Ophthalmologist and I have complete trust in him. I’m in the U.S. (Illinois). I don’t know where you’re from but his name is Dr. David Yoo I was referred to him by my Endocrinologist. Maybe try to get a recommendation from one of your other Doctors or from a friend. That’s always a good place to start.

      No matter how much you trust your Doctor, it will always be unnerving to think of someone cutting into your eyelid. But it’s helped me so much! The surgery isn’t long. The recovery is uncomfortable but not terribly painful. Which is good because I think we can expect to have it done more than once in our lives as our bodies may never stop attacking us.

      I wish you the very best of luck with your surgery! Please let me know how you’re doing. We can always chat here or you’re welcome to email me at, earnestlyanna1@gmail.com

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