Karen's Story

Forty-five-year-old Karen, a pre­school teacher, discovered that she had Graves' disease in 1999.

I didn't know what the thyroid was and how much in charge of our daily existence it was. I had been having trouble with sore throats and bronchitis. Something told me to go see my doctor about it. It had been ten months since my last appointment, and he immediately noticed my eyes. They've always been big, but they hadn't been stick­ing out so much. I also had a tremor in my right hand, and he found a goiter. Two days after I saw him, the test results came back, and he said I needed an endo­crinologist.

Looking back on it, I realized I had lost a lot of weight, but I was pleased about that. As far as diarrhea, I've always had colon and rectal problems, so I didn't think anything was unusual. And I was very emotional. It was all I could do to keep from crying. I was very nervous and had trouble sleeping. My heart was racing so much I felt like I could hear my heart beat.

Karen went to an endocrinologist who prescribed Tapazole and beta-blockers and asked her to return to his office every month. He increased her initial dosage of Tapazole when laboratory results showed no improvement in her thyroid hormone levels. He also suggested that she consult an ophthalmologist, who confirmed that she had Graves' eye disease.

My vision is blurred. I have double vision and tearing. And it's painful; it feels as though someone is pressing down on my eyeballs. I have no peripheral vision, and it hurts to look Up. [My ophthalmologist] plugged my tear ducts, but the plugs came out, and I'm still having eye problems.

I was surprised when I found out I was pregnant even though my hyperthyroidism was still not under control. I have a thirteen-year-old daughter and had had a miscarriage in 1997. And then there was my age, but I really wanted this baby. It worried me that I might have another miscarriage.

Karen's case was unusual in several ways. First, hyperthyroid women sometimes have difficulty getting pregnant; however, Karen discovered she was pregnant while she was hyperthyroid. Second, for unknown reasons, pregnancy tends to lessen the symptoms of Graves' disease; however, Karen's thyroid hormone levels went up, and her symptoms became worse.

I called my endocrinologist right away, and he called in a prescription of PTU for me. My obstetrician saw me right away because of my age and the Graves' disease. She wondered if I wanted to continue the pregnancy, but I did not want to terminate.

I started reading all I could about thyroid disease. I began to wonder about my treatment and how all this was affecting my baby, especially when I read that preg­nant women usually need about 200 mg of PTU. I was on much more. I decided to get a second opinion.

Karen visited another endocrinologist for a second opinion when she was twenty-seven weeks pregnant. She was taking 800 mg of PTU a day and, remarkably, was still hyperthyroid. Her endocrinologist referred her to an obstetrician specializing in high-risk pregnancies. An ultrasound revealed that the baby had a very large goiter. The baby's goiter was so large that it was preventing the baby from swallowing normally. Therefore, Karen's endocrinologist and obstetrician decided to inject thyroid hormone directly into the baby's muscle to reduce the size of the baby's goiter.

Ordinarily, thyroid hormone would be injected into the amniotic fluid, which the baby would then swallow, absorbing the injected thyroid hormone. However, since the baby's large goiter made swallowing difficult, levothyroxine was injected into its thigh. Within a few days of this intrauterine procedure, there was a 50% reduction in the size of the baby's goiter. Three weeks later, a second intrauterine injection of thyroid hormone was performed. This time, the obstetrician injected the levothyroxine into the amniotic fluid since the goiter was smaller and the baby was swallowing better.

I panicked when they told me about the baby's goiter. But I believe in the power of prayer and that doctors are God's tools. I was relieved that now I had an obstetrician and an endocrinologist who were working together.

Before, I felt that it was only me getting treated. Now both of us were being treated. I got hopeful knowing I was in better hands. Before this, I would sometimes have difficulty breathing when I was nervous. It was like I had hands around my neck. With the new infor­mation and the new doctors, it was like they removed those hands.

By the time Karen was thirty-four weeks pregnant, tests indicated that the baby's lungs were sufficiently developed for delivery. Since Karen's thyroid hormone levels remained elevated and since the baby's goiter continued to grow, her doctors decided to proceed with a Cesarean section.

A pediatric endocrinologist checked baby Savannah immediately after the delivery; her goiter was readily apparent. Savannah weighed 6 pounds 2 ounces even though she was six weeks early. Her doctor prescribed a combination of levothyroxine and PTU. She spent several days in the neonatal intensive care unit before being transferred to the premature nursery.

About a week after Savannah was born, she had a thyroid storm and had to go back into [the neonatal intensive care unit]. Her temperature went up and her heart rate increased. I wasn't there; I was at home when it happened. It was so frustrating. I would go to the nursery every day, but I would try to be back home by the time my other daughter came home from school.

Savannah responded to treatment and continued to improve. When she was discharged from the hospital, her mother gave her PTU and levothyroxine until her thyroid hormone levels were normal.

The PTU costs about $10 for a week's supply. It had to be refrigerated and was only good for seven days. Savannah was so good; she'd suck it right out of the syringe. I crushed up the levothyroxine, and she took it the same way. By the first of December, she was off all medication. Her goiter has completely disappeared. She really is doing so well.

On the other hand, Karen's thyroid hormones remained elevated after delivery, and she continued to suffer with symptoms of Graves' eye disease. She arranged to have radioactive iodine treatment before her baby came home from the hospital.

After the baby's birth, my goiter got smaller, and my eyes didn't seem to protrude as much. I might have looked better physically, but I still had problems. My legs were so weak that I couldn't get up off the floor without help. I had to cover one eye just to walk down the hall in the morning. I still have to do that to see well. I can't drive and have to rely on my family and friends to drive me wherever I need to go.

I knew before I had Savannah that I was going to have radioactive iodine, so I didn't breastfeed. I just wanted to get better as fast as I could. Just before I was scheduled for treatment, I woke up early one morning with a horrible headache. It was not like a normal headache; it was very intense. I had a temperature and my pulse was racing. My obstetrician said that I should go to the emergency room.

My family took me to the emergency room by 7:00 A.M., and the doctor there wanted me to take iodine for a [CAT scan]. I remember asking him, "Sir, are you sure?" Somewhere in the back of my mind I thought I had read that I wasn't supposed to be taking anything with iodine. But he said he could get a clearer picture this way. The ER doctor authorized the iodine before he talked with my endocrinologist.

It felt like I was burning up on the inside. I just couldn't stand it inside that [CAT scan] machine, so he stopped, injected me with something to calm me down, and put me back. I breathed through my nose as much as I could, but it was a horrible feeling; plus I was not at the height of my calmness. My thyroid was going ninety to nothing!

I spent the day in the emergency room and went home around 5:00 that afternoon. I didn't get to see Savannah that day.

Because Karen was given iodinated dye for the CAT scan, her treat­ment with radioactive iodine had to be delayed.

I finally had the treatment on December 14 [three and a half months after delivery], after Savannah had come home from the hospital. As of January 31, I was still a little hyperthyroid, but when I go back in April, I'm hoping that will be different. I feel a lot better; it's just my eyes that are bothering me now.

I know that I'll eventually have to have surgery on my eyes, but I want to wait at least until this summer. I don't know what the surgery's called, but it has some­thing to do with the muscle behind my eyeballs. I know [my endocrinologist] wants me to see someone who has done this surgery a lot.

Karen has this advice to pass on to others:

If you have that gut feeling about your health, don't ignore it. My gut feelings got me to go to my general practitioner in the beginning and made me get a second opinion later on. Don't ignore that little voice inside; it's more powerful than you are.

Karen is now euthyroid on levothyroxine. Her patience and persistence were rewarded with a beautiful, healthy baby..