by Sharon
I was diagnosed with Graves' disease about 20 months ago. I didn't notice that things were speeding up for me. I just wasn't feeling right but not really anything I could put my finger on. I had just come out of a very stressful time with the illness of my daughter. Also I had been having a rising blood pressure that I wanted to address--high blood pressure being a family issue. The doctor prescribed zestril which was fine except when I exercised I was really out of breath which was not normal for me. I discontinued the zestril and while getting a routine physical I came up hyperthyroid. I had no idea really what this was and no one in my family had ever had any type of thyroid disease. After seeing an endocrinologist and finding out more about the disease I began to see that I had some of the symptoms without realizing it. For one thing my appetite had increased and I was eating quite a lot of rich deserts with no weight gain although weight was never really an issue with me either. Also I was hot all the time and normally I run a little cold -- being that this occurred during the summer it was easy to ignore this as well.
My doctor did an exam and the size of my thyroid was normal. He noticed that I had fine tremors when my arms were outstretched. He suggested a radioactive iodine uptake test to make a definitive diagnosis. After the test there was no question that I indeed had Graves'. The endrocrinologist proceeded to educate me about my treatment options. He skimmed over the drug treatment and was really pushing me toward the radioactive iodine treatment that would in effect kill my thyroid rendering me hypothryoid with a life time on synthetic supplements.
In the meantime I had done some investigating on the web and found that 30% of the patients that opt for the drug therapy can go into remission. I decided I would try that before killing my thryoid gland. I began treatment with (I can't think of the name now--not the PTU--the other one). Before the drug could take effect I began to feel arthritis pains in my joints and also began having panic attacks that would last one hour.
It was a living nightmare -- I was as skinny as a rail and filled with anxiety. The doctor put me on atenelol (beta blocker) and lorazepan (a tranquilizer). I tried to stay on the drug as long as I could but lasted 3 weeks. By this time I was ready to swallow anything that would stop this, but my doctor encouraged me to try the PTU. I began the PTU for about 3 weeks hoping that this drug would be the one. I began to feel arthritis in my joints again and again I was ready for the ablation. My doctor encouraged me to cut the dose and work back up and see what would happen. About a week after cutting the dosage I began to feel very tired and during the next blood draw the doctor found that I had gone into a hypothroid state. I went off of the PTU and in 4 weeks had a blood test that levels were in low normal TSH. The doctor put me on a homeopathic dose of PTU (very small -- half a tab per day) and that perked me up.
Also at this time I found that my estrogen was almost gone (I am in the perimenopausal age range) so I began on the patch and 10-day natural progesterone. It took many months for me to feel an equilibrium. I was exhausted physically and emotionally. I felt like my body to be that belonging to an alien as I no longer knew it.
In March of '98 I officially went off the PTU as my ranges were all in normal (PTU and T3). I have been in the normal range ever since, testing every 3 months or so. I am seeing my endrocinologist this March of '99 for what I think and hope is a final evaulation. He told me that if I stayed off the PTU for a year and the hyper state did not return then I would be considered in permanent remission.
I thank my doctor for listening to me and then for continuing to support me even when I was really wavering and strongly considering ablating my thryoid. I would like others to know that it can happen, you can have a remission and maybe you'll be lucky and it will be permanent. Why destroy your thyroid gland if there's a chance for normal function.
