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Graves' Disease Resource Page
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SVEN'S STORY I struggled on where to start this story because there are really two possibilities for us all. One possible starting point is the day we were diagnosed, and the other is the time we started experiencing symptoms. I have decided to begin at the beginning since it demonstrates the comedy of errors! In the Fall of 1994, I was in college, and I woke up one morning and couldn’t open my mouth the entire way. It was stuck at a certain point, and I had to force it open to chew. I got awful headaches from this activity, but I lived with it for nearly five years. 1994 was also the year that I started losing weight. It was a very gradual process and so I didn’t notice it. I can only tell now by looking back at photos to know. I was about 210 pounds in the beginning of 1994. In the fall of 1996, I started having very itchy and dry shins. I did nothing about it thinking that it would just go away. I continued through life with terrible headaches until Jan., 1997 when at the time, I was working, and had gone to the doctor for a routine physical. At that physical, the doctor noticed that my right arm had a ‘tremor’. I said ‘what does that mean’, and he said ‘probably nothing’. He then diagnosed me with probable TMJ disorder, and that was when I first noticed my weight. I was at 180 pounds. I was surprised by the change in weight, but I had not monitored it over the years, so I sloughed if off as nothing. He prescribed horse-pill Ibuprofen for the TMJ pain, and I was on my way. He referred me to a local ‘jaw doctor’ (orthopedic type), who within seconds of checking my jaw said, and I quote “There is absolutely no question that you need braces”. I thought to my self, “I don’t want braces”, and besides, my teeth are pretty straight. He referred me to the orthodontist. The orthodontist told me that said I didn’t need braces, and that I just needed a ‘bite-plate’ to help relieve the night-time teeth-grinding. This thing was $373. Eventually, I did buy the thing, and I did get SOME relief from TMJ pain, but it was not a cure by any means. For example, if I ever fell asleep without the bite-plate, it was a guaranteed headache.
My days were made much more comfortable by having the Ibuprofen, and I was living a normal life. In the spring of 1997, I went to dermatologist for my itchy shins. He called it ‘winter itch’. I continued to have ‘winter itch’ all throughout summer. In the fall of 1997, my appetite was incredible. I couldn’t eat enough. I moved to Dallas for a temporary assignment with work. I would finish my packed ‘lunch’ by 9:30 a.m. I was so hungry that I felt sick to my stomach when I didn’t eat. I honestly felt like I could vomit. At this time, I started subconsciously feeling my neck. I don’t know why I was doing it, and I thought nothing of it at the time. In Feb., 1998, I moved to England for another work assignment. Still had the itchy legs. All my jeans and khakis had blood stains on the inside by the shins. I was continually famished. My core temperature was very high. I never wore a coat. People would actually get mad at me thinking that I was showing off or something by not wearing a coat even in cold weather. I was so hot, that I would sweat continually. For breakfast, I would eat 5 bowls of cereal, then I would pack a lunch consisting of a minimum of 2 sandwiches, a can of fruit, half dozen cookies, 2 mini-bags of chips, 2 juices, and a can of soda (pop where I from). This would rarely last me until 9 o’clock. I would eat lunch in the cafeteria, eat dinner in the cafeteria, and then go home and eat dinner again. Snacks throughout the day consisted of lots of chocolate, pre-packaged cakes, and whatever else I could find. Never gained a single pound (and I NEVER exercised). A friend mentioned to me that maybe I had a worm. I moved back to the States at the end of 1998, and got comments from each family member and friend that I saw. “wow have you lost weight”, “you aren’t eating enough”. My mom is a nurse and she didn’t notice my enlarged neck. Another family member of mine is a nurse, and she also suggested that I might have a worm. I noticed my rapid pulse rate in the spring of 1999. I monitored it throughout the day. 130, 140, 135, 160, 155 beats per minute. It was fluctuating dramatically minute to minute. I consulted the head nurse in the family, and mom suggested that maybe I was counting twice for each beat. Counting Ba-bump, Ba-bump, as two beats instead of one. I had multiple people check it, and I wasn’t counting wrong. I called my family doctor (who was not my original family doctor thank goodness), and got in for an appointment. She said “If you don’t have hyperthyroidism, then I’m going to eat....well I’m going to eat something, I don’t know what I’ll eat; I’ll eat this report.” This took her about 2 minutes to figure out. My pulse was 140 lying down in the exam room, and I couldn’t stop all sorts of involuntary movements and tremors. I kept saying “I feel fine, I feel fine”. In fact, I was sick. I got the diagnosis of Graves’ disease within a couple of weeks, and I was placed on Tapazole, and Antenolol. Interestingly, not only did my heart rate go down, but my TMJ which I had for 5 years, totally disappeared, and my good friend ‘winter itch’ went away. Both within one week of starting treatment. It was like magic. I cruised along fine on Tapazole; gaining 20 pounds in a matter of 2 months. My appetite went down, and I was getting better. My original blood work was > 6.0 T4F, and < .03 TSH, and now I was at 2.4 T4F, and .04 TSH. Not normal yet, but headed in that direction. Then disaster struck. I woke up one night with a piercing pain in my gums and teeth. I couldn’t sleep and could barely eat. First I called my endo since I thought that maybe it could be related to the Tapazole. He said that it doesn’t sound like it. I went to the dentist. All was fine. I went to my family doctor, and she couldn’t see nothing wrong, but was suspicious of the Tapazole. For one solid month, I slept an average of 3 hours a night if that. I was in total agony. I searched the internet for something on Tapazole, and finally found it. If infection occurs, it will commonly be either a sore throat, or in the gums. I had an appointment with my endo, and we decided to proceed with RAI. To take RAI, you must go off your ATDs. Literally the first day of being off Tapazole, my gums felt dramatically better. The second day, nearly perfect, and on the third day, I was back to normal. What a trip that was. In July, 1999, I was given 10 milli-curies of RAI. On the fourth day after RAI, I noticed my right eye was ‘wide-open’. I knew what it was and called my endo. I started using ‘the lube’ and natural tears. For the first couple of months after that I felt ‘slowed down’, but then started to pick back up again. By October, my eyes had gotten worse to where I felt pretty ugly. It felt like someone was inside my head with their feet propped up on the eye-balls, just pushing. I started pacing...A LOT. I would be talking to someone and they would say, “are you all right?” and I hadn’t noticed that I just walked back and forth across the room 50 times. By November my numbers were checked again. T4F was greater than 3, and my TSH was less than .03. On Nov. 18, 1999, I got another dose. My thyroid was much smaller, but my uptake was also less, so my dosed ended up being the same: 10 milli-curies. I am now very nervous about going hypo, and I think that will happen soon. My eyes hurt to move them and I have made an appointment with an ophthalmologist to get this checkout out. Looking back, it seems like just a comedy of errors by doctors can be attributed to me being sick for so long, but then again, I didn’t pay close enough attention to my own self. Maybe neither TMJ disorder or itching shins are a direct result of Graves’ disease, but GD was definitely aggravating both of the conditions in a severe manner.
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