My Personal Battle With My Thyroid
Posted 11 November 2020 - 11:48 AM
Hello Everyone, hope you are well.
My name is Quinn, and I was diagnosed with Graves disease at 14 years old, I am currently 20.
I remember the day I started showing signs of Graves very clearly. It was a year before I was diagnosed I was in 8th grade. I was in P.E. class and a girl who I barely knew asked me "Why are your eyes so big?". I hadn't really noticed, but you know once someone mentions something you can't really keep yourself from being insecure about it. I put this to the back of my mind though, I had bigger issues at the time.
Flash forward to my freshman year of high school. I was on the school cheerleading team, busy doing backflips, throwing people in the air, and doing intense workouts. It was slow at first, I remember losing skills slowly that I had mastered for a long time. Then it started to hit. My muscles would become so weak I couldn't do any basic tumbling as I used to, and I would be on the verge of passing out. No one believed me of course. They thought I was faking to get out of practice. My parents would take me to the store, DisneyLand (we lived in California) and I would have to sit down because it felt like my legs were about to give out, I'd have hot flashes as well. I wouldn't be able to sleep, and my heart felt like it was about to fly out of my chest. All in all I felt like crap all the time. Still no one believed me. The reckoning day was when my parents noticed my tremors and extreme weightless. I was sitting in my dads office and her had me hold my hands out, they were shaking uncontrollably. After this they noticed at my cheerleading competition with my tight uniform, that I was really skinny, and I mean like bad skinny. That was the final straw and I went to my doctor and they referred me to an endocrinologist. Now thyroid disorders are usually hereditary, so why did my parents not recognize the signs? Easy. I was adopted and my mother had only experiences hypothyroidism.
I was put on methimazole for my thyroid and propranolol to stop my heart from causing problems for me. I was put on suspension from ANY physical activity so my heart didn't burst which was excruciatingly hard for a 14 year old who just wanted to do the sport she loved. Months later my thyroid had leveled, and they let me go back. It was like magic I got all my skills back and made it to nationals that year. The next year I made varsity.
I thought my problems were all solved, but alas they were not. Throughout the rest of my high school years, I had nasty fluctuations and still felt like crap most of the time. They told me I couldn't be on Methimazole for the rest of my life and so I had to start thinking about other treatment. Obviously I wanted to do the one that involved the least amount of needles, RAI. I was 18 at the time just graduate high school.
We began the process, and the did an ultrasound off my neck. I had nodules of course. The choice was made for me and I was booked for surgery. I am still deciding if Id rather have just had liver failure from the methimazole.
Day came and I went under, not without a fight because I was terrified of surgery. Apparently my surgery ended up taking two hours longer than usual because of complications. First my thyroid was larger than they thought. Second I had nodules wrapped around my vocal chords. I woke up and stayed in the hospital for three days. The feeling of the stitches pulling every time you swallowed was something I still can't forget. I would cry every time I had to swallow more pills because it would pull at the stitches. Then they pulled the drain out which felt like a wet noodle being pulled out of your throat. There was no pain through this though I was dosed up, but the feelings were very uncomfortable. I got lucky, that I didn't have any nausea though. I still struggle with people reaching towards my neck, and clothing touching it.
Fast forward a week of feeling like you died and came back, I started getting bouts of nausea. Throwing up with it pulling at stitches is not fun. Swallowing was a chore of trying not to feel like I was ripping my throat open. I went to take a shower one day and got out and promptly fainted on the bathroom floor, which scared my mother half to death. I got to ride in an ambulance for the first time only to be told that the doctors didn't communicate to each other to have me stop taking my calcium supplements. Basically, I OD'd on calcium.
Three months later I went to another country for college. I know not one of the most amazing ideas. Surprisingly I was pretty good, and still am despite the next problem I will describe to you. I have since used my scar thats about 3 inches across as a halloween decorations, with a bit of fake blood and make up.
December of 2018, I was home for Christmas and we had gone to my aunts house. I started getting a headache which wasn't new for me, but this one was particularly bad. It got progressively worse and by the time I got home all I could do is cry and not sleep. This has gone on until now.
Currently I am 20 years old, almost 21. Its been 3 years since the surgery, almost 6 years since my diagnosis. Recently diagnosed with chronic migraines on meds for that and on 200mg of Levothyroxine to combat not having a thyroid. My migraines have caused me to reconsider my career aspirations as I graduate college this July 2021. I wonder if it was the way they had me laid on the table during surgery, or something else, but now I suffer from 2 invisible illnesses. One thing is for sure, I know how to fight for a diagnosis now.
I still struggle with my Graves Eye disease consequences, my eyes bulge and it is a huge source of insecurity. In pictures my eyes are uneven and people ask if I'm high. I went to an ophthalmologist to see what they could do and it involved breaking bones in my face so I decided I'd rather be ugly than have my face broken lol.
I'd call this a success story, on the part of my thyroid despite the recent concerns. I hope you all can relate and know you're not alone, there is a light at the end of the tunnel...eventually.
All medical procedures were done by Seattle Children Hospital, and Children's Hospital of Orange County.
Posted 12 November 2020 - 03:58 PM
Thanks for sharing yor story Quinn and so sorry you've been through all this at such a young age. It sounds like you may still have Grave's antibodies effecting your eyes You could try and get a blood test for these. Elaine Moore who runs a really helpful website has written a book about thyroid eye disease which is apparently quite helpful.
Posted 14 November 2020 - 06:19 PM
Oh Quinn. Bless your heart. I'm SO sorry you went through that especially so young. My heart goes out to you but also so proud of you to have the courage to share your story with us. You're very inspiring.
My older sister was diagnosed with Graves' Disease, five years before I was diagnosed with it. She had the surgery too, like you. She was diagnosed with Graves' and the bulging eyes. I've since learned it runs in our family because my maternal grandmother had it, as well. My Endo doc keeps telling me I will have to decide at some point (sooner rather than later) whether I want radiation or surgery because I can't stay on PTU forever. I too was put on methamizole at first but ended up breaking out in a dreadful rash after three weeks. Honestly, I don't want radiation treatment nor surgery and want to believe there must be another way but I just don't know what that could be.
As for your other issues, my sister had the eye surgery (they actually had to remove built up tissue from behind her eyes) a few years ago. She looks much better and more importantly, besides her terrible migraines, her self esteem has also improved and she's starting to feel more like herself again. You might consider getting a second opinion. We're here in California too. And as far as the migraines go, there has to be some kind of connection (of which I don't know exactly) with the surgery because my sister gets migraines all the time still and she's literally debilitated and can't function for days. It's very sad.
I wish you the very best Quinn! Take good care and whatever you decide to do after graduation - go after whatever brings you joy!