"The disorder is very treatable. Most of the time, I catch it at a point where the damage is reversible," he said. The liver is the most vulnerable organ because iron is primarily stored there, where it can cause irritation and inflammation. However, he said, "the liver is one of the most forgiving organs. It can repair itself." Although the heart doesn't regenerate like the liver, getting iron levels down to normal can reduce or eliminate heart palpitations. With early treatment, patients "do great. They lead a normal life."
Alpert referred Crowley to a hematologist, a blood specialist who immediately began treating her with therapeutic phlebotomy or bloodletting, where blood is removed to lower iron concentration.
"The treatment sounds old-fashioned," Alpert said. "In the old days, doctors might have put leeches on people. Nowadays, we draw blood often…we gradually deplete the body of iron."
After 18 phlebotomies in seven months brought her iron levels back to normal, Crowley asked her hematologist if she could drink again. "I wouldn't if I were you," he responded. "You want to protect your liver." She will continue to be monitored and undergo additional phlebotomies whenever her iron levels rise.
Symptom-free today, she wonders why none of her other doctors ordered the iron tests that could have saved her several years of ill health. She speculates the answer is that she didn't "appear to be anemic," although she took a lot of iron on the assumption that her fatigue stemmed from anemia.
Crowley is surprised to be the first in her 100 percent Irish family diagnosed with iron overload. The Lexington, Mass., native said she's worried about her two brothers, each of whom has a 50-50 chance of having the problem, but they refuse to be tested.
Crowley monitors research in the pipeline, hoping for the day that she'll no longer have to face needle sticks and bloodletting.
As she anticipated her second dry St. Patrick's Day, Crowley called herself "one of the lucky ones. I'm feeling better than I probably have in five years." She'll spend Saturday celebrating the decision to go public so others can be diagnosed and treated before damage is done.