Erendira's Story

Even though she may not look it, Erendira is a fifty-four-year-old grand­mother of five. Three years ago, during a routine examination by her gyne­cologist in Mexico City, she mentioned that she was nervous, losing weight, and becoming upset frequently. When he discovered that she also had a thyroid nodule, he referred her to a specialist.

He did an ultrasound that showed I had several nodules. He just said that I had a bad thyroid and prescribed [levothyroxine]. He said this medicine would stop the nodules from growing. He didn't draw any blood.

I took the medicine for years, but it didn't help my symptoms. To the contrary-I had tachycardia [rapid heartbeat], shaky hands, and became angry with life because I didn't understand what was going on with my body.

[Two years ago] I explained to the doctor that I was getting worse and that I was not happy. He told me I was a hysterical woman in front of my husband!

Thirty years before, a doctor removed my sister's thy­roid, but he didn't tell anybody what it was. To this day, I don't know why they removed her thyroid. Because of this history, I was concerned.

For years, they did an ultrasound every six months, but they did not tell me what they saw. I would ask the technician if [the nodules] were growing, but she said she wasn't allowed to discuss it with me. I had to convince her to tell me, and she finally said, "You have a very large nodule and another behind that." I didn't know I had all these little ones. I had to ask the doc­tor to do lab work. Once he poked my neck four times to do a biopsy. A half hour later, he told me that it was not cancerous.

I started smoking more and more and fighting with everyone. I'm sorry my life had to be like that. What a tragedy that you as a woman are supposed to under­stand your mate and children, but they can't understand when you are having trouble. My family just thought I was being bad.

My sister is schizophrenic, and so I was terrified that it was happening to me, too. My husband left me for a while. He said I screamed too much. No one tried to understand me-that it was a disease.

When a friend told Erendira about an endocrinologist in the United States, she decided to fly from Mexico to see him. After examining her and reviewing the results of her lab work, ultrasound, and thyroid scan, he confirmed that she had a multinodular goiter with many hot nodules, and a suppressed TSH. Bilateral fine needle biopsies yielded benign cells.

I was surprised he took so much time with me. The first day he did lab work, an ultrasound, and a scan. He told me that normally multiple nodules were not cancerous. He also told me to stop taking [levothy­roxine] and to come back in [three months]. I noticed I was less hyper after a month. One definite change in my life was that I started gaining weight.

Three months after her first visit, Erendira returned to her endo­crinologist for further evaluation. Even though she had stopped taking levothyroxine, her TSH was still low. Tests for Graves' disease were negative, and the thyroid scan and uptake were almost the same as when she was taking levothyroxine. Erendira's endocrinologist told her that she had subclinical hyperthyroidism from a toxic multinodular goiter.

I had radioactive iodine May 1, 2000. I came back six weeks later and was still a little hyperthyroid. Then in November, [my TSH] was normaL I had started to feel swollen, and, in December, my thyroid hormone levels were quite low, but [my endocrinologist] wanted to see if it spiked back up before he started me on medication. It didn't, so now I can be treated for hypothyroidism.

I'm very hypothyroid now. I'm sleepy all the time, and my eyes are puffy. My joints hurt. Yesterday I fell; my knees just gave out. I felt depressed and sad after the radioactive iodine. My hair even started falling out. I'm battling menopause, too, so I'm freezing then burning up. My skin is very dry and itchy. It looks like powder when I scratch it. My nails used to grow, and now they don't. I wear false nails now.

Erendira initially became euthyroid within six months of treat­ment with radioactive iodine. However, six weeks later, she was mildly hypothyroid with a TSH of 7.8 m U / L. After three months of obser­vation without medications, her TSH had risen to 19 mUlL. It was now apparent, after four-and-a-half months of hypothyroidism, that the tissue surrounding Erendira's hot nodules was not going to produce sufficient thyroid hormone. Therefore, she began taking levothyroxine and has continued to improve.

I have tried to tell my family about this disease. I tried to explain what it can do. Still they don't relate my behavior to the disease. It has been very, very difficult in my family. They have always been accustomed to me preparing the meals, always looking good. They never help; I do everything. They still don't like that Mother can't do everything.

I feel that by being honest about all of this, it will help others. I'm worried about all the other women going through this. People need to understand it's a physical problem. Now my husband comes with me when I come to see [my endocrinologist]. He's beginning to understand what I have been going through. He wants to help.

At first, he didn't understand why I had to keep coming back. He took all the [medical records] to a relative who is a pediatrician. He studied in this country, and he told my husband that everything that was being done was correct. He said that it was a process and takes time. Then he asked my husband, "Do you want your wife to die of a stroke, or do you want her to get better?" So it took another doctor to make him understand, but I am grateful he understands now and comes with me [to the United States].

A patient with a toxic multinodular goiter (or a toxic autonomously functioning thyroid nodule) treated with radioactive iodine has a 50/50 chance that only the hot nodules will be destroyed. When only the hot nodules are destroyed, the patient may temporarily become hypo­thyroid. Once the suppressed tissue around the hot nodules recovers, the patient's thyroid function returns to normal. On the other hand, if the tissue surrounding the hot nodules is also destroyed, the patient becomes permanently hypothyroid and requires levothyroxine therapy, just as Erendira did.