my Graves’ disease and Graves’ eye disease diagnosis.

boyfriend jeans. (more budget friendly option here.) white tee. boots. sweater. (similar here and here.) similar hat.

I know a lot of you have been following along over on Instagram and stories over the last few months and you’re aware of what’s been going on with my health issues and more particularly my eye, but I thought I would put it all down here so that it was in one place for anyone it might’ve been missed what was going on, and to also answer some of the frequently asked questions I’ve been getting for the last several weeks.

Where it started.

Back in July around about the time we got home from our trip to South Carolina, I noticed that my right eye was bulging strangely. I shrugged it off as allergies because my allergies are always bad in the summer, particularly in my eyes, and didn’t think about it again until about two weeks later when I noticed that rather than going away it was getting worse.

In mid-August I called my optometrist who referred me to an ophthalmologist. When I described the situation with my eye, the ophthalmologist told me to come in immediately so they could see what was wrong and whether whatever was happening was a symptom of something more serious. When I went in they ran a bunch of tests and did a bunch of measurements and I was told that my eye bulging out was not in fact from allergies but from something else. Worried that it might be a brain tumor the ophthalmologist sent me to get an MRI.

I should also mention that this was the same week I found out I was pregnant for the second time this year. I had an early miscarriage in May; Craig and I started trying for another baby in January, and I got pregnant for the second time in July before my eye started bulging and I realized there was potentially something wrong with me.

I went in for my MRI on August 23 a nervous wreck as you can imagine, wondering what a brain tumor would mean for me and now this new little baby. I found out later that week that, thank heavens, I did not have a brain tumor, but they still didn’t know what was wrong with my eye.

After the good news on my MRI the ophthalmologist I had been seeing referred me to a specialist at Yale in early September. They contacted me to set up an appt, but because of COVID, getting in was tricky and I had to wait a month an half. During that time I sadly had another miscarriage, losing the baby this time at 8.5 weeks. September, as you can imagine, was a rough month for me and my family. Losing the baby and then waiting anxiously to find out what was wrong , all the while my eye getting worse and more uncomfortable. It took a toll. By the time I saw the specialist on October 19th, I was actually quite anxious. Thank you all for the prayers during that time, I felt them so much and they helped ease my mind like you wouldn’t believe.

And God was so good to me in answering mine and your prayers, I was able to get some answers and also help from some truly wonderful doctors.

My diagnosis.

After another round of tests, measurements and bloodwork, I found out last Monday that I have Graves’ disease and Graves’ eye disease. Graves’ disease is an auto-immune disease that attacks the thyroid and causes hyperthyroidism. It can wreak havoc on your systems, and cause all kinds of fun symptoms like insomnia, irregular heartbeat, heart palpitations, anxiety, heat sensitivity, exhaustion, etc. Yes, it’s a real picnic. The same autoimmune disease that attacks the thyroid cells, can also do the same on the surface of the cells behind the eyes, which is why I also have GED, and this is why my eye has been bulging for the last 3 months.

Where we go from here.

Now that I have my diagnosis, it’s a matter of getting everything treated and my thyroid levels back to normal, and also treating my GED. I have met with my endocrinologist and I have a lot of hope that the treatments we’re moving forward with will help me get better. She was so kind and reassuring. Right now I am on a medication called methimazole . It will work on helping regulate my thyroid levels so that we can get my blood levels back to normal and hopefully alleviate the symptoms of Graves’ disease, that I have been experiencing. I can honestly feel a huge difference in my anxiety levels just in the last 4 days of taking it. Which feels like a massive blessing.

As far as my GED, right now I’m waiting for my follow up appointment with my ophthalmologist before we begin treatment on my eye, until then I’m using gel lubricating drops during the day and lubricating ointment (I didn’t even know that was a thing!) at night on my bulging eye because it never actually closes all the way when I blink anymore. Yeah it’s no fun. The dryness was part of the reason my eye was so irritated so it’s definitely helped a ton just adding those two things. I am also taking selenium which my help with my eye.

I’ve also cut most dairy and gluten from my diet and I’m getting more rest meditating and trying to minimize my stress irritate Graves’ disease.  I plan to start the AIP diet on November first. It’s meant to be a 4-12 week gut resent to help figure out what food might be causing inflammation as well as contributing to my Graves’ disease.

My endocrinologist also shared with me that my miscarriages are most likely due to the Graves’ that she’s very hopeful that once they get my levels worked out and my thyroid is normal that I will be able to have another baby, God willing. I am so grateful to hear that, and hope that we are blessed with another soul to raise.

How I’m feeling about it.

I’ve spent a lot of time over the last three months feeling frustrated, discouraged, and even scared, but what I feel right now just very very grateful. Grateful to know what it is, grateful that it is so treatable, and grateful that I have been blessed with some truly amazing doctors who I know will help me get better.

During my church’s General conference in early October one of our leaders shared a story about the early members of our church who, while building one of our temples had to bury the foundation because they were worried about a conflict with an army coming into the valley where they were building. After the army left and the foundation (which is made of sandstone) was dug up, they realized it was in a cracked in several places and would have to be completely replaced. It was 9 years of work and they would have to start over. But when they rebuilt it was with a granite foundation, one that would be capable of holding the weight of the temple. If the army had never come they would not have known the sandstone foundation wasn’t capable of holding the weight of the temple, and by switching to a granite foundation, the temple still stands today.

When I was talking to my husband about how I felt grateful that my eye had started to bulge in July even though it was uncomfortable and made me self-conscious, because if it hadn’t I probably never would’ve gone in and gotten tested for Graves’ disease. I would have kept living with often soul crushing anxiety, and kept miscarrying babies and living with the condition, and never knowing that there was something wrong with my body.

Carter who had been sitting nearby, popped his head up and said, "Mom, your eye is the sandstone foundation!"

And it is! When my eye started buying, I thought that what God had given me was an adversity, but it was really a tender mercy. He was giving me helping discover a deeper issue that needed fixed, and the way to heal my body from something I didn’t even realize was wrong.

I’ve always had a high tolerance for discomfort and pain. I’m definitely a "grin and bear it" type person. But as I’ve started to feel some of my symptoms alleviated I’m beginning to see just how bad I actually have been feeling for many years. I don’t feel anything but grateful. And honestly I’m excited to get better, to work with the doctors and do my part to heal my body.

If you have experience with Graves’ disease I would love to hear your story and how you treated it. Please feel free to share your experience in the comments!

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