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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14 Comments

  1. Aprile wrote:

    Hey girl! 2020…what a year! So wonderful of you to share your story with others. I have a friends who had the exact same diagnosis and while it was scary and hard, she’s been really successful with treatment. Finding the right meds really does make a big difference! Wishing you all the best!

    Posted 10.29.20 Reply
  2. Dawn Gerber wrote:

    So sorry to hear that. So much stress. I, too, have had serious health issues in 2020. Thinking good thoughts for you. Someone recently told me that the human body is very resilient. Keep that thought.

    Posted 10.29.20 Reply
  3. Trish wrote:

    I love that I have found you as we are similar in size which makes shopping so much easier. My first pregnancy was twins. They were just a fluke. Identical
    boys. Then a few years later and 3 miscarriages later I was tested and found to have Hashimoto’s disease. This they felt was the reason for my miscarriages. My daughter who we were finally blessed with was a very calculated pregnancy with ovulation predictors, baby aspirin and progesterone suppositories in the early months. All of my earlier miscarriages happened at 10-12 weeks. I did go on bed rest with her at one period for some bleeding. Needless to say besides all of them being born premature, my identical boys at 30 weeks (now 27 years old) and my daughter at 36 weeks ( now 23 years old) I trusted that God always had a plan for us. My thyroid levels have remained ok but as you may know Hashimoto’s disease is an autoimmune disease so I must remain vigilant to changes that I may experience. Wishing you all the best and following you in your journey. Sincerely,
    Trish Maggiacomo

    Posted 10.29.20 Reply
  4. TamathaBanks wrote:

    Oh Cori, I’m so sorry! What a long and difficult journey this has been for you. I’m so sorry to hear about the miscarriages, it is such a traumatic experience, although I know you know that. I’m also so sorry to hear about your Graves’ diagnosis. I have the opposite, Hashimoto’s (hypo, not hyper). I’m glad to hear that your meds seem to be working and that you are feeling a bit better now. Sending prayers for you and your sweet family – you have been through a lot.
    Oh and I loved that story from conference. Such a great analogy to your experience

    Posted 10.29.20 Reply
  5. Katie wrote:

    I’m so glad things are looking up, Cori. My sis in law has hashimotos which is different than graves (I think it’s hypothyroid rather than hyper?) but she is a million times better than she was before getting treatment. I’m excited for you to start feeling better!

    Posted 10.29.20 Reply
  6. Anon wrote:

    I just want to say that I am sorry that you have been going through this. Glad that you were able to find good docs. I have PCOS…but a type that can’t be affected by just eating low carb…A type no one cares to research. I have had a lot of skin problems, a sort of receding hairline, hair in the wrong places…and that’s just some of the stuff that is seen on the outside. I know what it is like to not like what is going on with your appearance and to wonder why it is you have this thing that you didn’t cause…that requires a lot of extra self-care that you don’t really have the time for. I guess life goes on regardless…

    Posted 10.30.20 Reply
  7. Carrie wrote:

    I’m so sorry you are going through all this. I myself was just diagnosed with Lupus after nearly 3 years of tests …bone marrow biopsy, mri, ultrasounds, bloodwork, etc. I agree with you how frustrating it is but there is also relief after a diagnosis is made…. at least we know what we are dealing with now. Much love and support to you and your family.

    Posted 10.31.20 Reply
  8. Maura wrote:

    I’ve been following you for years, back when you were in Arizona as laviepetite. Started coming for the style points and stayed for the life inspiration. You’ve always been real with an optimistic twist (: My heart goes out to you and I’m praying for you. So sorry it’s been such a rough year. The good news is you are beginning to manage it now and can start the road to healing (physically and emotionally). Looking forward to seeing you overcome this and move on to better days!

    Posted 11.3.20 Reply
  9. Dana wrote:

    I am so glad you found out what was making you ill, the stress of not knowing is hard to bear. I was diagnosed with Graves’ disease in 2017 after a really difficult year. I thought is was the stress making me feel so bad, I had a really high heart rate all the time, my hands were shaking and I was extremely emotional. I actually went to a cardiologist because I thought something was wrong with my heart and was afraid of having a heart attack ( I was 36 at the time). Thankfully they figured it out pretty quick and sent me to an endocrinologist. They took some blood samples and found out my hormone levels were incredibly bad. They started me on a high dose of methimazole right away. Weirdly enough, even though I was so bad, my eyes didn’t bulge, or it wasn’t obvious enough. I took the medicine for a whole year and they kept testing my hormone levels and adjusting the dose accordingly. After a year my levels were normal and a was able to stop taking methimazole. I was drug free for two years, but this summer, after all the covid related stress from spring, I started feeling weird again. Now I know how to recognize the symptoms, so I got blood tests immediately. My thyroid started acting up again, so I have to take a small dose of medicine for a few months, until I get back to normal again. From what my doctor told me, this is how it’s going to be for the rest of my life: I will have drug free periods and there will be times when I have to take methimazole. If I can manage my stress levels and take care of my diet, I can live a pretty normal life. But recognizing the symptoms early on is very important because you can treat it before it gets worse. I hope this helps you and I wish you peace and quiet to be able to heal as fast as possible. Sending you hugs!

    Posted 11.7.20 Reply
  10. Lisa C wrote:

    Thank you for being so vulnerable and sharing your story. I stated meds for my thyroid almost 13 years ago, about a week after finding out I was pregnant. I don’t think I would have carried to term if they hadn’t found out about my hypothyroidism immediately. My endocrinologist was wonderful and we’ve had to tweak my meds over the years before landing on a dose that has been working for me. I completely understood it when you said you felt like death everyday…and yes, women tend to plough through despite our bodies own pleas. Hoping you feeling more yourself soon. Sending good and healing vibes your way xo

    Posted 11.10.20 Reply
  11. Marie wrote:

    It sounds like you already know the link between food and your auto-immune disorder and it’s great you’ve done your homework about the AIP diet but I wanted to be sure to let you know that you can get bloodwork done to test what foods are causing your auto-immune response. I had a similar journey to yours and finally found a doctor 4 1/2 years ago that did a food sensitivity test uncovering a broad range of severe food sensitivities. It changed my life! It’s no picnic avoiding all the foods on my list but my health has done a complete 180. You can ask for the test through most naturopaths, some nutritionists or use an at home kit like the one sold by everlywell. Good luck on your journey!

    Posted 11.12.20 Reply
  12. Mimi wrote:

    Hello I’m kind of a new follower (never really messaged you before) and just hoping the best outcome for you. I had a similar situation when I was 19 my eye just kept kind of staring and it was really noticeable in pictures. I went to the dr and thankfully the dr knew to test my blood right away and I was diagnosed with Graves’ disease. I was medicated and eventually my eyes kind of calmed down. They stood a little bulged but definitely not as much as they did initially. Getting the medication just right took a while to get right. I had issues with anxiety, hair falling and rashes. I definitely encourage you to do your own research and ask lots of questions. I eventually was treated with radioactive iodine about ten years after my initial diagnosis. That lead to hashimotos disease. Every person is so very different. A few things that have helped me- going gluten free, started taking selenium and other supplements. There is so much more to share if you’d like to know pls feel free to ask me.

    Posted 11.16.20 Reply
  13. Keri wrote:

    I’ve been following your blog since you lived in Seattle! I lived there too and someone mentioned you were a great resource for petite fashion (I’m 5’1”). Nonetheless, I was recently diagnosed with Graves Disease in 2020 also. Thankfully I was a symptomatic, but it was caught on an annual blood test. I’ve been taking medication, eating a low iodine diet and GF/DF. It really has helped! I have been told by my endocrinologist this is like having diabetes, it is something they will monitor regularly and with stress management and dietary changes and medication I can live normally. Thankful it was caught early!

    Posted 1.24.21 Reply
  14. Kandy Hull wrote:

    You have given me such peace by reading your story. My mom has Graves disease and I was told yesterday my eye is starting to bulge so I am being tested also. Thank you so much. My prayers will be with you to have another little one in your home soon. God Bless!

    Posted 2.10.21 Reply