What It’s Really Like Having Thyroid Eye Disease

It’s not unusual to look in the mirror and scrutinize your small imperfections, whether it’s a pimple or a new wrinkle. Now imagine gazing at yourself one day and realizing that something is very wrong—with your eye. You might feel like you don’t even recognize yourself. We spoke with Amyleigh Foster, 41, about being diagnosed with thyroid eye disease and how it affected her mentally and physically. Foster lives in Cape Canaveral, FL, where she runs a health coaching business (www.amyleighfoster.com). Following are excerpts from her interview.

A Life of Fluctuating Thyroid Levels

I was on hypothyroid meds (Synthroid or levothyroxine) my whole life—I was diagnosed with hypothyroidism at 16, but it was never very well managed. My TSH levels were always fluctuating and I always felt pretty lousy. My hypothyroid symptoms were severe: anxiety, depression, weight gain, hair loss, brain fog. My medication was adjusted many times, but I was never tested for Hashimoto’s. [Ed. note: Hashimoto’s thyroiditis is an autoimmune condition that slowly destroys the thyroid. It is the most common cause of hypothyroidism in the US.]

I ended up on a high dose of levothyroxine, and because I didn't have my blood tested for about six or seven months, it pushed me into hyperthyroidism, which caused me to develop thyroid eye disease in late 2017/early 2018.

‘What’s Wrong With Your Eye?’

I noticed that my eye started to look a little bit weird when I took selfies. I was like, “Oh, that's weird. What's going on here?” But I didn't really think about it.

Then I started getting full body hives all the time and more frequent headaches. I had moved so I saw a new doctor and she came into the room and said, “What’s wrong with your eye? I need you to get your labs done right now. There's something going on.”

My right eye was slightly bigger than the left. I thought that I was getting a crazy eye. It wasn’t scary at that time; it wasn’t bulging. It was just a little bit weird.

The doctor adjusted my thyroid meds so I wasn’t hyperthyroid anymore. I went back to being hypothyroid. But the eye got worse and worse. One eye was pointed up and the other one pointed down. (This is called strabismus.) It was bulging and there was a lot of eye swelling. If you put your hand over my eye, there was a noticeable bulge. It was very painful.

There was so much pressure in my eye that I was having migraines almost every day—intense, curling up migraines. I’d have to call out of work probably two days a week. I was working in the food and restaurant business where there were a lot of wine tastings, and when I drank alcohol my eye and sinuses became incredibly painful and the strabismus got worse. So I could barely drink alcohol at all.

Getting Diagnosed

I went to an eye specialist and he used words like “grossly deformed” to describe my eye. I cried my eyes out. He diagnosed me with thyroid eye disease and glaucoma-level eye pressure. When I told him that I was experiencing almost daily migraines and felt constant pain in my right eye, he told me that I was wrong—I couldn’t be experiencing pain because thyroid eye disease isn't usually associated with pain.

‘A Doozy of a Time’

From late 2017 until early 2020, I was living in misery and I was getting worse. I was in a pretty bad mental state. So I called some random therapist. I feel like therapy was helpful just for survival, but it did not help me have a breakthrough because I had so many other things going on. It was a real doozy of a time. My living situation changed. I broke up with my boyfriend. I was going through thyroid eye disease. And I changed my job. So I was reeling.

Every day, I felt pretty terrible about myself. Though I was overweight most of my life because of my hypothyroidism, people would always tell me that I had such a beautiful face. And then when my face started to change, I didn't recognize myself when I looked in the mirror anymore. It was really hard.

I didn’t allow pictures to be taken of me for probably three years. But I didn’t isolate myself. Being in the restaurant industry, I didn't have an option to not come into contact with people. But it definitely made me incredibly self-conscious.

I leaned on my amazing friends and family. But one of the things that really helped me was starting a strong journaling practice. At first it was just to process my feelings. It helped me practice some objectivity about my thoughts and feelings, so I could be less reactive. But around that time, I read that people who practiced gratitude were happier, so I added in a daily gratitude practice. I did feel happier. While I had some things that really sucked in my life, I also had so much to be grateful for.

Journaling helped me to not only become more aware of my emotional health, but I also started to notice patterns in my physical health. And by keeping a daily commitment to myself, even if it was just for 10 minutes, I started to rebuild my self-efficacy.

The Tide Turns

In January 2020, I switched to a new doctor, an integrative doctor who leans towards functional medicine. That’s when I started to get better. He ran my labs and diagnosed me with Hashimoto’s, something my previous doctor had not done even after I asked if I might have an autoimmune condition. I was already taking T4 but he added in T3 [the active form of thyroid hormone; T4 is normally converted in the body to T3]. This doctor also prescribed low-dose naltrexone. [Ed. note: Naltrezone is a prescription drug usually used in addiction treatment but sometimes prescribed in low doses for other conditions.]

After my doctor made me aware that food sensitivities can be connected to autoimmune disease, I decided to go on an autoimmune protocol diet. This made the biggest difference in my life. I eliminated grains, dairy, legumes, refined sugar, alcohol, and nightshade foods. I also stay away from most oils except avocado, coconut, and olive.

I started feeling better within a month. After one month, I had only a few migraines. After three months, a lot of the eye swelling was gone, and I had zero migraines. Also, my weight dropped.

The amazing thing about this diet is that not only did my thyroid eye disease symptoms improve, but I also realized that a lot of the things that I was living with my entire life weren’t normal. It’s not normal to feel exhausted. It’s not normal to have brain fog. It's not normal to be completely red-faced and inflamed and have hives all the time. I didn't know how bad I felt every day until I started to feel better. I would never go back.

Recovery and Vigilance

When you’re in it, it’s so hard to believe that the eye swelling can go back down and things can be close to normal again, if not 100% normal. I do still have a slightly raised eyelid on my right eye as well as strabismus. So I wear prisms in my glasses. And I don’t really drive a lot at night. But otherwise it’s pretty much not noticeable to somebody who's not gazing into my eyes. I no longer feel bad about myself.

Self care is a big priority for me. Now I go to the doctor and get my labs done every six weeks. And I’m vigilant about my medication, making sure that I'm neither getting pushed into hyperthyroidism nor swinging back into hypothyroidism. It’s really important because I don’t want to have another active phase of thyroid eye disease.

I’m careful with what I eat. Nightshade is my biggest issue. If I even get a little bit of hot pepper flakes in my food, my eye hurts really bad. If I’m not careful or if I’m overly stressed or if I don’t get enough sleep, the eye swelling comes back but not anywhere close to what it was. My strabismus gets a little more noticeable, and the eyelid retracts a little bit more.

I'm working my way closer and closer to remission [from Hashimoto’s] every day. My TPO antibodies are going down every few weeks. It's been pretty great. I'm definitely going to continue living my life this way because it feels good.

A New Calling

I really went through the wringer with my thyroid disease experience. But coming out the other side has been such a life-changing experience for me that I felt called to become a health and wellness coach so that I could help other women. So that they don’t spend the next 20 years of their life thinking that there's something wrong with them as a person. I thought I was lazy when I was actually physically sick. When I realized I was suffering from Hashimoto’s disease, I felt like my experience was discounted by many health care people, and it made me really mad. I wanted to be an advocate for other women who are going through the same experience.

I want women to know that there’s hope, that you do not have to feel like this forever, that you have a lot more control than you think you do. Controlling environmental factors, really upping your self care, and changing the way you eat can make a massive difference in how you feel every day. You can fire your doctor and seek somebody who's going to help you. I wish I had done that much sooner, but it just seemed like such a daunting task.

You can truly create a life that you love without being held back by your diagnosis.