Thyroid Eye Disease (TED)

Thyroid Eye Disease: My Story

As many of you may have read from my Instagram post, I couldn’t clearly see my son, Felix, when he was born and I didn’t know why. Something was wrong with my vision and I had no idea what was causing it. In fact, I didn’t even associate it with my vision. Was I just lightheaded? Too little iron? Or maybe just too much screen time (hello, nursing mothers!).

But it turned out that this new and ongoing problem was more than just the typical postpartum adjustments to a new baby. Eventually I was diagnosed with postpartum thyroiditis with the possibility of Graves’ disease. 

Thyroid Eye Disease (TED)

Discovering TED

For those of you who are new to all of this (I definitely was when I involuntarily jumped into this boat), Graves’ disease is an autoimmune disease that causes hyperthyroidism. What?! Me, hyperthyroidism? You can imagine my surprise.

Something was off, I could feel it for sure, but with a new baby, running a business, and all the stresses of life, I couldn’t tell if I was just stressed out, burned out, or who knows what. Eventually I went to the doctor because I really wasn’t doing well. I hadn’t lost a single pound from birth, my hormones were heightened (that’s a tactful way of saying it my husband would say ;), and my blurry “light-headedness” was at an all-time high.

Brittany and FelixThe doctor helped me pinpoint that it wasn’t actually light-headedness, it was my vision. It was slow to focus and blurry. These were the symptoms directly after childbirth!

Thyroid Eye Disease

Luckily for me, and the timing couldn’t have been more perfect, I’ve partnered up with Horizon Therapeutics on its Listen to Your Eyes campaign to share information on the link between thyroid conditions, like Graves’ disease, and a separate but related disease called Thyroid Eye Disease (TED). Did you know that up to 50% of people living with Graves’ disease are at risk for developing Thyroid Eye Disease (TED)? 

Thyroid Eye Disease

Since my diagnosis, I’ve opened my eyes (pun not intended) to the possibility of new diagnoses and how beneficial this information can be to others who may be struggling with similar issues but are lacking the resources they need to understand what they’re living with and how to cope.

Thyroid Eye Disease (TED)

Knowledge brings hope

When I began this journey, I felt at a loss to understand what was happening to my body. Now I know so much and am still learning!

Thyroid Eye Disease (TED) causes eye symptoms including bulging, double vision and debilitating pain. If not treated early, TED can cause serious damage to vision and appearance of the eyes. TED can even cause vision loss in more severe cases.

Brittany and Felix

I still have so much to learn but have a lot of hope for the future. If you or someone you love has Graves’ disease, pay attention to any eye symptoms. If you notice changes in your eyes, like bulging, light sensitivity and pain, don’t just assume those symptoms are part of Graves’ disease. Report them to a TED Specialist – such as an oculoplastic surgeon or neuro-ophthalmologist.

To find a nearby TED Specialist and other resources, visit www.FOCUSonTED.com.

This post is sponsored by Horizon Therapeutics. Thanks to our sponsors that allow us to create unique content for you!

2 COMMENTS

  1. Hello, I’m so sorry to hear of your diagnosis. I was diagnosed with Graves’ disease and later thyroid eye disease about 4 months ago. I feel much better, but my eyes are getting worse. I’ve seen two eye doctors that tell me my hormones just need to be regulated & that my eyes will probably not look the same. I’m wondering how your eyes are now and if they ever got swollen or bulging what your treatment plan was? If you’re willing to share, if not I totally understand & wish you the best!

    • Hi Natalie,
      My name is Carol & I was diagnosed early November 2021 with Graves Disease and TED weeks after that.
      I felt very alone as to any information or support. I felt afraid & alarmed at all the changes in my body. The weakness, tiredness, total lack of strength & energy. So unlike me. I felt like my muscles were melting from my body. I have only phone call appointments with my Endocrinologist. He got me on medicine to rebalance my thyroid & after a month I stopped losing weight & gained some energy back. But he was not interested in discussing what the causes could be, or about the immune system, or about dietary & lifestyle changes that could help, no ‘do’s & don’t’. It’s all about the monthly results of my blood tests, period.
      About a month later, my eyes started bulging & were so very sore, red, watering, swollen & looked weird! Mornings were always the worst. I had to wait almost 3 months to see a specialist that told me I have TED & they can’t do anything & it could last 6 months – 3 years! The only helpful advice I received was not to smoke!!! So as both my “specialists” were less than helpful I knew I had to take matters into my own hands. I did A LOT of research and am now working with a naturopath & have changed to a Vegan. I bought a bed that elevates my head & I only sleep on my back, so my eyes are not as swollen in the morning. I keep a reuseable gel eye mask in the fridge for bad eye days. Also Garnier has a nice ‘anti puff eye roller’ that I keep in the fridge – feels great anytime It’s all about reducing inflammation. No salt, (which is impossible, but I have drastically reduced my intake, especial iodized salt), no gluten, no sugar, no saturated or transfat, no deli meat, no read meat, no dairy, reduce processed foods. I’m on a lot of vitamins & supplements & micro greens that are relevant to Graves and TED. In a couple of months of my dietary changes, my eyes are SO much better! I still have the ‘stare look’, but not so bad. My right eye has always been the most swollen for some reason and still is. No-one understands what its been like for me, not even my family. I look down when i’m in the stores etc…sometimes I have such a short fuse, little things really bother me. I don’t want to go out, or attend special functions because I fell like I look awful 🙁 As to if we’ll ever look the same as we used to, no-one seems to know and I’ve done tons of research. My plan is to get through Stage 1 of TED as quickly as I can by getting my body and immune system as strong and healthy as possible. I’m starting up yoga again as I’m feeling strong enough again. Good Luck with your journey. If you want to email me, please do. clincz@hotmail.com

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