Frustrated ...2nd opinion?

I was diagnosed with ITP in February with a count of 13. I have since been seen by a hematologist several times. My counts have dropped, gone up and now dropping again. I slowly being weaned from the horrible prednisone. The thing is that my white blood cell count is high and hemoglobin low.I wait two hours for a five minute visit. I feel ignored. I feel there is domething else going on, although I am told no. His goalis to keepme above 50! Gee, that sucks to me. I am thinking that this illness is so rare, I am not getting the attention I need or deserve. Do I make sense? Does anyone else feel the same? I dont want to wait till something does develope then YOU(doc) know what to do. Oh well....

I think that under any circumstances if you are not happy with your medical care and don't feel that you are getting the attention you require you should find a new doctor or seek another opinion. It can be complex, high WBCs could be from prednisone or from other causes. You need to feel comfortable with the information your doctor is giving you.

Beth:

With ITP, sometimes the goal is simply to maintain counts above 50k; that is considered to be a safe number. He's right about that. I know that we feel like we have to see 'normal' numbers, but it's really not necessary. I've noticed that the doctors who realize that are actually more up to date than the doctors who strive for high counts.

White counts often go up because of Prednisone so that is not unusual. Going out of the reference range is okay and the doctor normally knows if it is a serious elevation/drop or just a temporary glitch that will resolve eventually. They look for extreme highs or lows with blood counts. I can't remember the last time I had a normal CBC. I don't worry unless the doctor tells me I should. Of course it's always possible that something else could be developing, but most of the time if it hasn't developed enough for a diagnosis, there is nothing anyone can do anyway.

I rarely ever saw my doctor when I had low counts. I got the count done and if it was low, a nurse would call me and we'd discuss options. I never felt that there was much to discuss so that was fine with me. I always liked to know what the next plan would be so I did discuss that when I did see him.

Why do you think you have something other than ITP? Do you have any symptoms such as fever, weight loss, swollen glands, night sweats, etc.? Lacking symptoms or other oddities in blood work, it is normally assumed to be ITP.

However, if you do not have faith in your doctor, a second opinion is never a bad idea.

Thank you both. I do have some other issues that have cropped up. I just feel like more discussion should be taking place with me about me. I feel I am no more knowledgeable about myself than I was in the beginning.

Then at your next appointment, you will have to be firm and advocate for yourself. Make a list of questions beforehand. Sometimes if a patient has issues that do not seem related to the problem you are there for, doctors do not want to hear it. In that case, you'd be better off with your GP or another specialist.