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This blog is dedicated to logging my experiences in the treatment of Graves disease. I am hoping it can help other people going through the same thing or help doctors to understand how that this disease has a big impact on a person’s daily life.

I first started having obvious symptoms of Graves disease in the spring of 2003. I was in college and had recently gone through a bad break-up. I was stressing about that and not sleeping much at all. I also would have to pee nonstop at bedtime and it kept me awake. I craved candy like mad. What brought me to the doctors office was that I was a runner and had run cross-country and track in high school. I didn’t run nearly as often in college but was still working out and could always go out and jog 2 miles whenever I felt like it. Suddenly I noticed I was having to give it everything I had just to run a mile. I was embarrassed and thought maybe for the first time I was out of shape. But time after time I would go running and it seemed to only get more and more difficult. I also had my hands start shaking really bad at work and I suddenly was tired just standing up. My legs felt fatigued and all I could think about was how bad I wanted to sit down.

Accordingly I went to the dr, they ran tests, and I got a call a while later with them telling me I had low blood sugar. They just said to eat more meat and less carbs. So I went on a militant low-carb diet. My friends thought I had gone overboard, but I was determined to feel better. But there was to be no relief. I couldn’t sleep much at all and was exhausted all day. If my friends wanted to do something at night I would often have to lay in bed and rest for 4 hours beforehand. My muscles would twitch all over my body as I tried to sleep and it would drive me nuts. I still had to pee nonstop so even naps were usually hard to come by and my mind would race while I was awake. I was also getting nauseous once in a while and having to suddenly go to the bathroom #2 more often during the day in between my classes. I had majored in printmaking, which is a more physical way of making art and I was starting to feel tired and weak just standing up and making prints.

I started seeing several drs. I went to a neurologist who said an antidepressant might give me more energy and go to a track and run a fourth lap, walk a fourth lap etc. I did this but it was very irritating for someone used to running cross-country and I was still weak. The anti-depressant just made my head tingle. The college drs were all too eager to have me try out a string of other mental drugs for sleep, all of them had bad side effects. None offered much relief. I also started having my heart pound really hard in my chest as I was lying quietly in bed. It was very scary not knowing what was going on. I finally went to an endocrinologist who examined my eyes and said “this is Graves disease.” My hopes were so high when I heard that. I assumed I would get treatment. But that was not the case. My labs were not showing Graves disease even though my eyes were. I was to be monitored periodically.  I went to a string of endocrinologists trying to get help. One sent me to an opthalmic surgeon who had me get a CAT scan which locked in the Graves diagnosis in my eyes. My last endocrinologist finally put me on a long-acting beta blocker which really helped to calm me down and slow down my heart rate so I felt less anxious and dizzy. But he was not willing to do anything beyond that. He said even though I have Graves disease, my labs are normal so this must all be due to anxiety. I countered back that it didn’t make much sense that a person who ran cross-country is suddenly too weak to run due to anxiety -but he was holding firm. I have not seen another endocrinologist since. I have decided that I just couldn’t take the dissappointment for the time being. And I have thrown so much money away on seeing these drs to no avail. For now I am giving acupuncture a shot and I will see how it goes. I wanted to keep track of how I am feeling in this blog.

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2 Comments»

  bibomedia.com wrote @

🙂

  kat wrote @

thanks for sharing.
i was just diagnosed with graves last month. they put me on PTU and I also started acupuncture.
hang in there
kathy


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