What Happened in 2018: My Experience with Graves' Disease Part One
Hey all!
It's definitely been a long time, but I thought I would pop back on here to review my year of 2018. I know, I know, I am a little late. But I wanted to enjoy the holidays without stressing over writing blog posts. Either way, this is the story of this past year. It was crazy, full of ups and downs. These posts will mainly focus on the biggest part of this year: my health journey + experience with Graves' Disease. I hope if you deal with similar issues you can relate to this, or maybe you just remember me talking about it earlier this past year and want an update. This won't be eloquent, or have perfect grammar (sorry ) but either way, here's the whole story:
I feel like everything before my diagnosis was kind of a blur: the beginning of 2018. I remember working a lot, starting up writing lessons, getting my license (after failing the test once...haha ), doing school, taking a family trip to the Mall of America and turning 17. I remember it going well, going good. I don't remember feeling bad. But that all kind of changed in April. We were about to leave on a trip to go see my brother's senior presentation at his college in the southern part of the state. The plan was to spend the night at my grandparents who live four hours away and then the next day go see him. We had some other things we were doing on the trip to. I was excited. While I don't like some parts of traveling, I do enjoy the excitement of trips. I had even planned to spend time with a friend who I hadn't seen in awhile. The thing was, I got really sick. I had been for the past few days. It seemed like a common cold, except my throat was on fire! To this day I still have not had a sore throat that bad. I could barely eat food or drink water without being in pain. I had to take pain medications just so I could drink a bunch of water and eat food while they were working. It was crazy. So the day we were supposed to leave, my mom took me to the doctor to get tested for strep throat. Everything seemed normal. I wasn't worried or scared. After all if I had strep, at least I could get on an antibiotic. At the doctor's office they checked my blood pressure, as they do, and it was ridiculously high. Now, I was not a huge fan of doctors back then, they made me nervous. So we kept telling them that was the reason everything was high. Later we learned that was not the case. So they took it again, and again, thinking that maybe it was mistake and things weren't reading right. But still it stayed the same. At this point I started to realize that I did feel a little off, my heart was pounding, and it did feel uncomfortable. Anyway, they took the strep sample and got it tested and then the doctor came in. He asked a lot of questions about my throat and glands, and how my neck felt. He told me my sample came back negative for strep, but he also said he was concerned about something different. He told me he thought I had thyroid problems, more specifically hyperthyroidism. And he thought what I was experiencing right now was a thyroid storm. A thyroid storm is basically a hyperthyroidism attack, when your blood pressure and heart rate get dangerously high. I freaked out, I literally thought he was crazy. We came in for a sore throat. And now you think I have thyroid issues? I didn't even really know what a thyroid was, besides that it existed. He wanted us to get blood work done, so we went to the lab to do that. I was a mess. When your heart rate is through the roof you CANNOT think rationally. I basically sobbed uncontrollably and kept telling myself the doctor was wrong. We decided to postpone our trip a few hours, and headed back home to wait on the results. I remember praying over and over again, that everything with my thyroid would be fine. I was sure it would be. Right? I had never had any sort of health issues before in my life. We tried to get my heart rate down through things like deep breathing, essential oils and resting. But it still was high.
Later we got the call. My thyroid numbers were off the charts. Let me pop in a bit with some explanations in case you don't know what that means. Hyperthyroidism is basically when your thyroid is overactive. You thyroid produces hormones, which control things like your heart rate\blood pressure. Often people with hyperthyroidism experience symptoms like, high heart rate\blood pressure, fatigue, hand tremors, increased appetite, nervousness and sleep issues. These are just a few. So when your numbers are up, that's really bad, to put it simply.
We were all kind of shock, especially me. I didn't know what to think or do. I kept telling myself that we would just get on the right medicine and everything would be okay. I didn't realize how a serious health issue can completely encompass your life, at least for a little bit. None of realized that right away. So we picked up the prescription beta blocker (it lowers your bp/heartrate) I took it and then we left on our trip. I remember feeling really not like myself when the medicine hit, super tired and not hungry at all. Pretty normal for taking something like that for the first time. We got to my grandparents and settled in for the night. Later that night we checked my blood pressure, and it was high again. It was really scary. We were realizing the mistake of setting off on the trip after everything. We had to take a trip to the ER around 10ish that night where we redid most of the tests I had had done in the morning and they made sure I was okay. They ended up just having me take more of my beta blocker to lower everything. I had never been to the ER before, and I really hope I never have to go again. Anyway we finally left at some early time in the morning (1? or 2 maybe?) We got some rest, and the next morning drove back up to near where we live, to a large city about an hour from home where my doctor had set up an appointment with an endocrinologist. Basically, we had to untravel all of our travel from yesterday. I know that doesn't make sense. But the bottom line is I saw someone who specializes in these sorts of things and was able to diagnosis me with Graves' Disease. Graves' is an autoimmune disease and the most common cause of hyperthyroidism. Essentially your immune system attacks your thyroid which is what causes all the over-activity. The symptoms work hand in hand and are basically the ones I mentioned above. They don't know exactly why it happens, but it does. He went through treatment options. The first, the one we started, was to take a medication to reduce the level of thyroid hormones. The second option would be to take an amount of radioactive iodine, which would essentially reduce part or all of the use of my thyroid. I won't get into details on that, but radioactive iodine is not ideal in the long run, and something we want to avoid. Oh and the last option would be removal of my thyroid. Which obviously is a last resort.
So we started the medicines and my mom and I went home to rest for the next few days. It was weird, it was like being sick except not. I was really tired, and had to take naps. I also still had that really bad sore throat, it didn't go away for awhile. I was still kind of in shock too, everything had happened so fast. My mom and I started looking in the past, thinking about how I had felt. Things started to add up, other times in the past year or two, or so when some of the mentioned symptoms had happened. Mainly the fall of 2017 when I had really bad hand tremors, a common sign of something like hyperthyroidism. Anyway, my endocrinologist had suggested that I do nothing for awhile, so that's what I did. We kind of pushed back into "normal" life after the first week of rest, or tried to. I even went back to work for one day, and on a trip to see my brother graduate. But things weren't normal. On that trip I faced a lot of anxiety, especially in large crowds, something I had never dealt with before. I didn't look like myself either, my face was bloated and swollen, which was really frustrating. Sometimes it still gets that way. But I made it through and we went back home.
That's when the first major setback came, the rash. I had already been on my thyroid medication for a couple weeks, so we thought we were out of the side effect danger zone. But we weren't. I started to notice a rash appearing-I will save you from the details-but it was itchy awful hives. And it was definitely a medicine side effect. It lasted for for about five days and then started to taper off after about a week if I remember right. And it was awful. I tried every kind of natural anti itch remedy. I used lotions, oils, and when nothing else worked I took Benadryl and passed out on the couch. It was definitely a low in my health journey. The scariest thing was the worry that I wouldn't be able to go back on the thyroid meds (I was off of it, so the hives would go away) without getting a rash again. We weren't sure what to do if we couldn't get back on it. My endocrinologist wanted us to start thinking about radioactive iodine. We felt like we were running out of options, especially since we weren't sure if my body would tolerate my thyroid medicine ever again.
But this blog post is getting way too long so we'll end here ;) no promises on when a part two is coming, but I will try for sooner than later!
Thanks for reading this much if you did. Until part two...
-Abby
It's definitely been a long time, but I thought I would pop back on here to review my year of 2018. I know, I know, I am a little late. But I wanted to enjoy the holidays without stressing over writing blog posts. Either way, this is the story of this past year. It was crazy, full of ups and downs. These posts will mainly focus on the biggest part of this year: my health journey + experience with Graves' Disease. I hope if you deal with similar issues you can relate to this, or maybe you just remember me talking about it earlier this past year and want an update. This won't be eloquent, or have perfect grammar (sorry ) but either way, here's the whole story:
I feel like everything before my diagnosis was kind of a blur: the beginning of 2018. I remember working a lot, starting up writing lessons, getting my license (after failing the test once...haha ), doing school, taking a family trip to the Mall of America and turning 17. I remember it going well, going good. I don't remember feeling bad. But that all kind of changed in April. We were about to leave on a trip to go see my brother's senior presentation at his college in the southern part of the state. The plan was to spend the night at my grandparents who live four hours away and then the next day go see him. We had some other things we were doing on the trip to. I was excited. While I don't like some parts of traveling, I do enjoy the excitement of trips. I had even planned to spend time with a friend who I hadn't seen in awhile. The thing was, I got really sick. I had been for the past few days. It seemed like a common cold, except my throat was on fire! To this day I still have not had a sore throat that bad. I could barely eat food or drink water without being in pain. I had to take pain medications just so I could drink a bunch of water and eat food while they were working. It was crazy. So the day we were supposed to leave, my mom took me to the doctor to get tested for strep throat. Everything seemed normal. I wasn't worried or scared. After all if I had strep, at least I could get on an antibiotic. At the doctor's office they checked my blood pressure, as they do, and it was ridiculously high. Now, I was not a huge fan of doctors back then, they made me nervous. So we kept telling them that was the reason everything was high. Later we learned that was not the case. So they took it again, and again, thinking that maybe it was mistake and things weren't reading right. But still it stayed the same. At this point I started to realize that I did feel a little off, my heart was pounding, and it did feel uncomfortable. Anyway, they took the strep sample and got it tested and then the doctor came in. He asked a lot of questions about my throat and glands, and how my neck felt. He told me my sample came back negative for strep, but he also said he was concerned about something different. He told me he thought I had thyroid problems, more specifically hyperthyroidism. And he thought what I was experiencing right now was a thyroid storm. A thyroid storm is basically a hyperthyroidism attack, when your blood pressure and heart rate get dangerously high. I freaked out, I literally thought he was crazy. We came in for a sore throat. And now you think I have thyroid issues? I didn't even really know what a thyroid was, besides that it existed. He wanted us to get blood work done, so we went to the lab to do that. I was a mess. When your heart rate is through the roof you CANNOT think rationally. I basically sobbed uncontrollably and kept telling myself the doctor was wrong. We decided to postpone our trip a few hours, and headed back home to wait on the results. I remember praying over and over again, that everything with my thyroid would be fine. I was sure it would be. Right? I had never had any sort of health issues before in my life. We tried to get my heart rate down through things like deep breathing, essential oils and resting. But it still was high.
Later we got the call. My thyroid numbers were off the charts. Let me pop in a bit with some explanations in case you don't know what that means. Hyperthyroidism is basically when your thyroid is overactive. You thyroid produces hormones, which control things like your heart rate\blood pressure. Often people with hyperthyroidism experience symptoms like, high heart rate\blood pressure, fatigue, hand tremors, increased appetite, nervousness and sleep issues. These are just a few. So when your numbers are up, that's really bad, to put it simply.
We were all kind of shock, especially me. I didn't know what to think or do. I kept telling myself that we would just get on the right medicine and everything would be okay. I didn't realize how a serious health issue can completely encompass your life, at least for a little bit. None of realized that right away. So we picked up the prescription beta blocker (it lowers your bp/heartrate) I took it and then we left on our trip. I remember feeling really not like myself when the medicine hit, super tired and not hungry at all. Pretty normal for taking something like that for the first time. We got to my grandparents and settled in for the night. Later that night we checked my blood pressure, and it was high again. It was really scary. We were realizing the mistake of setting off on the trip after everything. We had to take a trip to the ER around 10ish that night where we redid most of the tests I had had done in the morning and they made sure I was okay. They ended up just having me take more of my beta blocker to lower everything. I had never been to the ER before, and I really hope I never have to go again. Anyway we finally left at some early time in the morning (1? or 2 maybe?) We got some rest, and the next morning drove back up to near where we live, to a large city about an hour from home where my doctor had set up an appointment with an endocrinologist. Basically, we had to untravel all of our travel from yesterday. I know that doesn't make sense. But the bottom line is I saw someone who specializes in these sorts of things and was able to diagnosis me with Graves' Disease. Graves' is an autoimmune disease and the most common cause of hyperthyroidism. Essentially your immune system attacks your thyroid which is what causes all the over-activity. The symptoms work hand in hand and are basically the ones I mentioned above. They don't know exactly why it happens, but it does. He went through treatment options. The first, the one we started, was to take a medication to reduce the level of thyroid hormones. The second option would be to take an amount of radioactive iodine, which would essentially reduce part or all of the use of my thyroid. I won't get into details on that, but radioactive iodine is not ideal in the long run, and something we want to avoid. Oh and the last option would be removal of my thyroid. Which obviously is a last resort.
So we started the medicines and my mom and I went home to rest for the next few days. It was weird, it was like being sick except not. I was really tired, and had to take naps. I also still had that really bad sore throat, it didn't go away for awhile. I was still kind of in shock too, everything had happened so fast. My mom and I started looking in the past, thinking about how I had felt. Things started to add up, other times in the past year or two, or so when some of the mentioned symptoms had happened. Mainly the fall of 2017 when I had really bad hand tremors, a common sign of something like hyperthyroidism. Anyway, my endocrinologist had suggested that I do nothing for awhile, so that's what I did. We kind of pushed back into "normal" life after the first week of rest, or tried to. I even went back to work for one day, and on a trip to see my brother graduate. But things weren't normal. On that trip I faced a lot of anxiety, especially in large crowds, something I had never dealt with before. I didn't look like myself either, my face was bloated and swollen, which was really frustrating. Sometimes it still gets that way. But I made it through and we went back home.
That's when the first major setback came, the rash. I had already been on my thyroid medication for a couple weeks, so we thought we were out of the side effect danger zone. But we weren't. I started to notice a rash appearing-I will save you from the details-but it was itchy awful hives. And it was definitely a medicine side effect. It lasted for for about five days and then started to taper off after about a week if I remember right. And it was awful. I tried every kind of natural anti itch remedy. I used lotions, oils, and when nothing else worked I took Benadryl and passed out on the couch. It was definitely a low in my health journey. The scariest thing was the worry that I wouldn't be able to go back on the thyroid meds (I was off of it, so the hives would go away) without getting a rash again. We weren't sure what to do if we couldn't get back on it. My endocrinologist wanted us to start thinking about radioactive iodine. We felt like we were running out of options, especially since we weren't sure if my body would tolerate my thyroid medicine ever again.
But this blog post is getting way too long so we'll end here ;) no promises on when a part two is coming, but I will try for sooner than later!
Thanks for reading this much if you did. Until part two...
-Abby
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