(WOMENSENEWS)–In 1973, X-rays suggested that 12-year-old Karen Waldvogel would grow taller than average–her doctor estimated a height of 7 feet. Worried that Waldvogel might never find a husband because of her height, he recommended two years of high-dose estrogen therapy to suppress her growth.
Waldvogel grew to nearly 5’11”, got headaches, and her nipples darkened. Through college, she had “horrible” periods and bled even when she wasn’t menstruating. After she married and couldn’t become pregnant, surgery revealed ovarian cysts and widespread endometriosis, in which the uterine lining extends to other organs and develops into small, painful growths.
After surgeries came cervical polyps and later giving birth at 24 weeks to an infant girl who lived an hour. She persisted and became pregnant again, only to deliver twin boys at 21 weeks, one stillborn and one who also lived for only an hour. At age 38, Waldvogel and her husband tried one last time, and after a problem-filled pregnancy, delivered her daughter, now 2. By that time she had met two other women who also had received estrogen treatment when they were girls to prevent growth; they found that among them they’d lost 10 children.
Most physicians agree that unlike in cases of “gigantism,” in which an abnormal pituitary gland produces too much growth hormone and results in heights of 8 feet or more, tallness is not a disease warranting medical intervention. Girls receiving high-dose estrogen treatment have normal pituitary function and usually have tall parents or other relatives.
Despite reports of serious long-term effects like those Waldvogel experienced, some doctors continue to offer estrogen therapy to prevent the perceived social harms of being “too tall”–interpreted as anywhere from 5′ 9″ and taller, but more commonly 6 feet and up.
A 1978 survey of pediatric endocrinologists in the United States found that 71 percent of the 74 who responded had used high doses of estrogens to suppress the growth of 426 tall girls, according to a study by the nonprofit Physicians Committee for Responsible Medicine published in February in the Journal of Pediatric and Adolescent Gynecology.
Committee researchers were surprised to find that between 1995 and 2000, hundreds of girls in the United States were still being given the treatment, said Dr. Neal D. Barnard, the lead author on that study. Of the 411 doctors who responded, 137–or 33 percent–said they use the treatment.
“What really makes me angry,” says Waldvogel, an elementary school teacher in Encinitas, Calif., “is that there’s no follow-up study on any of us. It’s still being practiced and who knows what the future holds for all of us?”
Side Effects, Lack of Standards Characterize Treatment
The U.S. Food and Drug Administration has not approved the use of estrogen to curb growth, though the practice is not illegal. And while doctors have prescribed estrogens for tall girls since 1956, no standard dosage or treatment length has been established. They agree only that a pre-pubescent or adolescent girl’s body must be flooded with estrogen in doses much higher than the standard birth-control or “hormone-replacement” dosage to cause bone cartilage to mature and stop growing, which may shorten predicted height by as much as two inches.
The treatment causes early menstruation in girls and doctors surveyed by the committee noted other myriad side effects, including weight gain, nausea and vomiting, irregular periods, dizziness, hypertension, ovarian cysts and blood clots. Many women report endometriosis, endometrial cancer, miscarriage and infertility more than 10 years after treatment, the committee found.
No studies have followed women beyond 10 years after treatment, Barnard said.
A retired pediatric endocrinologist in California who prescribed high-dose estrogens for tall girls agreed with Barnard that research on the treatment is needed, but said it should include the adverse social effects of being “too tall.”
The doctor, who asked not to be identified, pointed to a study of boys who hadn’t reached puberty by age 16 that found a 15 percent suicide rate, and wondered whether untreated, “too tall” girls had similar problems.
“I would raise the question: Does being 6’6″, being too tall, do they have a lower incidence of marrying?” the doctor said. He adds that he “never liked using estrogens because you’re not treating a disease.” However, he adds, “I think you might be treated for something that [causes] mortality, such as suicide.”
Petition Seeks FDA, Manufacturer Response to Treatment Practice
Dr. Scott A. Rivkees, a pediatric endocrinologist and professor at the Yale School of Medicine, has treated or helped to treat at least five girls with a high-dose synthetic estrogen commonly used in birth-control pills. He starts the two-year treatment in the third, fourth or fifth grade, depending on projected heights, and says he’s learned of no significant problems in the patients he’s treated in his 17 years of practice.
“About one in four or five girls will have reproductive problems, so it’s important to look at the risk of endometriosis in a systematic manner,” says Rivkees, adding that taking progesterone for 10 days of each month prevents endometrial problems.
Barnard and his group filed a petition with the Food and Drug Administration on Feb. 5, asking that all estrogens carry a label warning that they are not approved for growth suppression. He says he recently asked Wyeth-Ayerst Laboratories, the maker of the drug Premarin, one of two estrogen formulations commonly used, to support the petition and to study the long-term health of women treated with the drug, but says he has not received a response to those requests.
Calls to the FDA and Wyeth-Ayerst seeking comment on the committee’s petition were not returned. By law the federal agency has 180 days to respond to the petition.
But in a 1999 letter responding to an earlier, similar appeal by Barnard, Debra Littlejohn, a drug manager for Wyeth-Ayerst Pharmaceuticals, wrote, “Premarin is not indicated for the treatment of constitutionally tall adolescent girls to inhibit growth. Furthermore, we are not conducting clinical trials related to the safety or efficacy of Premarin for this purpose.”
Rivkees says that “many of the medicines doctors use every day are off-label uses, particularly for things involving children,” including doctors’ use of growth hormone on “thousands” of normal but short children to increase their height. Though dismissive of the committee’s opposition to estrogen treatment, Rivkees said he would welcome long-term monitoring of women who have had high-dose estrogen treatment.
Psychologist Elizabeth Slater, who was treated with high-dose synthetic estrogens at age 9 to stop her from becoming “too tall,” would rather see an end to the treatment altogether.
“There’s only one reason to be shorter: It’s for men,” says Slater, who is nearly 5′ 11″. She adds, “I can’t think of any other reason.”
Suzanne Batchelor has written also for MedscapeHealth.com, WebMD, “HealthLine Texas” and the National Science Foundation series “Earth and Sky.”
For more information:
Physicians Committee for Responsible Medicine:
Tall Girls Inc. Australia: