Hi. I'm new to this forum. My husband was diagnosed with ITP in 2001, when he needed open heart surgery at 49. He was given steroids for three days and the surgery was successful. He sees a hematologist twice a year and, aside from frequent bruising, has had no big issues -- until now.
He had a significant nosebleed last week and I took him to the E.R., where he bled for a LONG time before they finally packed him. I told EVERYONE that he had ITP and there was very little response. Finally, they checked his platelets and found them at 70, which I see on this board is not all that low for an ITP patient. He generally fluctuates between 55 and 75 and is tested twice a year.
The E.R. doc told us hubby should not be taking baby aspirin -- which he has taken for nine years because of heart concerns.
Next day, I called the hematologist and tried to involve her in his care. Concern was what would happen when they took the packing out of his nose. She basically told me to call his primary care doctor and that she doesn't get involved in nosebleeds.
In reading the discussions on this forum, I realize that Niacin can cause bleeding. He has been taking Niacin for the heart condition for several years. His cardiologist prescribes it and his hematologist is (or should be) aware of it, as it is on his list of meds. The hematologist has discussed checking his bone marrow and possibly taking out his spleen, but she never mentioned cutting off the aspirin or the Niacin...
Now I'm wondering if I shouldn't find a hematologist who specializes in ITP. This one, like many, is primarily an oncologist. The one who originally helped him nine years ago has retired.
Is there a list of ITP-specialist hematologists? I don't know if it is appropriate to ask for referrals on this board, but I would love to talk to a doctor whose special interest is in ITP. We live in southeast Michigan and easily could travel to Detroit, Ann Arbor, Cleveland and elsewhere if necessary.
Thanks for any advice.
Carol Ann
