Brothers share more than a family name

Hemochromatosis Awareness Month

Brothers share more than a family name

By Dennis Thompson
HealthDay Reporter

(HealthDay News) -- Dr. Shaun Carpenter, an emergency room physician in New Orleans , owes his older brother a huge debt.

Carpenter, 37, couldn't figure out why he felt so bad all the time. "I thought my headaches and fatigue and pain in my left elbow were all from being overworked," he said.

It turned out he was suffering because of hemochromatosis. He found this out after his older brother, Stephen, was diagnosed with the genetic disorder after a decade-long medical odyssey.

"I was caught early as a result of his diagnosis," Shaun said.

Stephen Carpenter, 41, said he began suffering from unusual symptoms and general bad health beginning in his late 20s. A guitar player, he found that the joints in his fingers were becoming stiff and achy. He also was put on a heart monitor for a while at age 29 when doctors discovered that his heartbeat had become abnormally slow.

Stephen ended up with so many varied medical complaints that everyone -- his doctors, his friends, his family -- figured it must all be in his head.

"You inevitably get written up as a hypochondriac," said Stephen, who lives in Lafayette, La. "I went in to have various aches and pains checked out, and two different doctors sent me to a psychiatrist. You look at all of these symptoms, you think, 'Wow, here's a psycho.'"

His symptoms took a downward turn in 2001, when Stephen, then 34, underwent surgery to take care of recurrent acid reflux. His mind became cloudy, he became more irritable, he felt constantly fatigued, he sweat profusely and he started having heart palpitations.

"I told a couple of people around that time, 'I think I'm going to die,'" Stephen recalled.

In hindsight, he thinks his symptoms increased because he was no longer chewing rolls of calcium-loaded antacids to curb his acid reflux. Calcium is a natural iron blocker.

Wondering if his problems might have something to do with anemia or the thyroid, Stephen requested a blood test to evaluate his iron levels. The levels came back high, and in August 2008, a hematologist diagnosed him with hemochromatosis.

While Stephen was trying to figure out what was wrong with him, Shaun wasn't feeling too well either. He'd taken on a pale, grayish pallor, and his symptoms continued to worsen.

Shaun found out about Stephen's diagnosis and, in early December, got a blood test done himself.

"As a physician, I was able to get the numbers ahead of time," he said. Sure enough, he, too, had hemochromatosis.

Shaun began receiving weekly phlebotomies and altered his diet to cut back on iron-rich foods. "I cut back on shrimp, and I live in Louisiana ," he said.

As a result, Shaun's symptoms have declined. He doesn't get headaches as often but said he still feels fatigue.

Stephen took a different path. He altered his diet but was worried that weekly phlebotomies would wreck his veins. He only started receiving phlebotomies in May after learning of a blood bank process in which technicians draw blood, spin off the red blood cells and then return the remaining plasma to the person's body.

"You don't get dehydrated, and it cuts the number of sticks in half because you're taking twice the amount of blood out," Stephen said. He's still feeling poorly but expects that, as his treatment continues, he'll improve.

Meanwhile, Shaun considers himself one lucky man. This is the third time he's cheated a serious medical condition, having beaten lymphoma and melanoma earlier in life.

"I'm a walking representative for early screening and preventative medicine," he said. "I'm either very lucky or very unlucky, depending on how you look at it."