# New member here with Graves', my story...



## SimonSezz (Jul 23, 2008)

I'm 24 years old and I found this board while searching for Graves' disease information online. I first started noticing effects of Graves' when I was in high school. I'm 5'8" tall, male, and only weighed about 130 lbs at the time and I was really skinny even though I drank a lot of soda, stayed up most of the night, and probably consumed at least 4,000 calories a day. I could eat anything and wouldn't gain a pound. Then during summer vacation during freshman year in college I was out with my parents at our summer house and I had done a lot of outdoor work that day in 90 degree heat. We stopped at a gas station and I had a grand-mal seizure while waiting in the car. I don't remember anything except for waking up in an ambulance and then passing out again and waking up in a hospital bed. My muscles were so sore after the seizure that I couldn't walk for two weeks and had to stay a week on painkillers at the hospital. After having a series of scans and test done, the doctors could not conclude definitely what the cause of the seizure had been, except that it could have been dehydration or low blood sugar.

Soon after the seizure I started experiencing episodes of "flashes" during which I would feel like I would pass out and exhaustion. I found out that by eating I would feel better within a matter of minutes. Sometimes just a couple of hours without eating would cause me to have a cold sweat, start trembling, and I would be looking for food. I also started having anxiety attacks, severe insomnia (sometimes not sleeping for 3 days), and I was getting even skinnier. I would also feel hot even when it was 50 degrees. I went to see my family doctor and he had some blood tests done, including a fasting test. Right after the fasting test I passed out as soon as I got off the chair. The doctor concluded that I need to see an endocrinologist. I met with the endocrinologist and had more blood tests done and they showed high levels of insulin and my TSH and T3, T4 levels were abnormal. So I was given a prescription to methimazole and saw the endocrinologist every couple of months and he concluded that I could start lowering the dosage and finally I was off of the medication. I also had to take Paxil for my anxiety.

Everything was fine for about a year until I started experiencing the effects of hyperthyroidism again. I went to see the endocrinologist and he suggested that I be tested for an insulinoma, which is a tumor on the pancreas. I also had scans of my thyroid done (iodine uptake test). The insulinoma tests turned out negative, thyroid looked enlarged. I was referred to another endocrinologist at the University of Chicago. A couple weeks before going to see the new endocrinologist I experienced my second grand-mal seizure while at a restaurant, while waiting for our food. I had to have CT-scans and EEG tests done again and everything looked fine. Insulin levels were still very high. I finally went to see the new endocrinologist and my case was (and still is) being reviewed by doctors worldwide. I am currently on PTU (propylthiouracil), Paxil, Keppra (for seizures). I had the RAI treatment done about 8 months ago and am still taking the PTU, and my blood is being tested every couple of weeks. Recently my PTU dosage was decreased dramatically after I started showing signs of being hypothyroid. One thing that has been bothering me recently is that I have had pain in my legs, specifically below the knees on the inner part of the legs. Also I have had severe lower back pain and I feel like I need to sleep really often. My weight has increased to 208 lbs which comes out to a BMI of 35% for my height, but I try to be as active as I can be and work out cardio 3 times a week and weight train 4 times a week. My doctor assures me that the BMI is not accurate for my body density because of my weight lifting regimen but I still feel overweight and I guess I have to wait for the medications to level out. For the past 12 weeks I have been gaining about 1 pound a week and now I have been at 208 lbs for two weeks, hopefully with the lower dosage of PTU my weight will be falling. I eat on average about 1,800 calories a day and I watch what I eat.

The doctors still do not know why my insulin levels are above normal but they believe it is related to my thyroid. First they want to sort out my thyroid problem and it looks like things are getting better with the thyroid hormone levels.

With all of these Graves' disease issues I have not been able to attend college courses for four semesters now, I cannot drive so I am limited to where I can work, I have lost contact with a lot of friends. I always have tried to stay optimistic though. I hope to be going back to college by Spring of next year, although I would have already graduated more than a year ago at this point.

All in all, I wish anyone with any thyroid issues the best and I'll be checking in on the boards often and learning of others' experiences.


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