Carol Coons

Type of Porphyria

Porphyria Cutanea Tarda (PCT)

I have PCT but was misdiagnosed many times since I first noted that I was blistering in 2004. Three dermatologists in a row were unable to find out what was wrong with me even after I had a biopsy. My ferritin level was accidentally discovered at an unrelated clinic visit, and it was over 900.

At that time, I was told to go to a hematologist, who said that that my only problem was hemochromatosis, even after I showed him my blisters and sores. I did have a genetic H63D heterozygous defect. I had a port put in place and to date, I have had over 45 phlebotomies. My internist sent me to get a second opinion, where I was told that I had PCT. As the treatment was the same, I had not gotten a port or had the other phlebotomies in vain.

I have no idea how I developed PCT, but now I try to stay out of the sun, but it did show up while I was taking Paxil for my fibromyalgia pain and spending a week at the beach. Now I try to stay out of the sun and am careful not to eat too much iron. My liver is fine now, and fortunately I did not need a liver biopsy.