Getting worried, am I being paranoid?

[topcow]

Hey everyone, let me start by saying that my son was diagnosed with MDS in 2010 but then last year the docs realized he actually has PNH. He is getting treatment now with Soliris.

But my question is about myself, not him. For over two weeks I have been getting the chills and running a low grade (100.00) fever every day. My labs show zero sign of any type of infection. My doc is puzzled, because my blood counts appear to be dropping also. Right now my RBC is at 4.0, WBC is 5.9, PLT 231, HGB is 11.3 (it has gone up from 10.3 since beginning iron supplement). I know none of my counts are real bad, but I am concerned about the fact that they are going down for no apparent reason, along with the unexplained fever. Any thoughts?

Yes, I may be paranoid about this due to my experiences with my son, but I feel like crap and really feel like something is not right.

[topcow]

I forgot to add that my doc checked my vitamin levels and did a metabolic panel, all of which came back normal. And even though my hemoglobin has increased since beginning an iron supplement, my total RBC and other counts have continued to fall.

[Neil Cuadra]

topcow,

I'm sorry you are feeling lousy.

Are your counts really going down, meaning they are dropping from one CBC to the next, or are they holding at those mildly low levels? Do you know what your counts have been in the past, before this started? You don't want to draw any conclusions from a since CBC test.

Your white count isn't elevated, so that's another sign that you don't have an infection. Which is good since you don't want to be a possible source of infection for your son.

You have reason to be concerned and to ask questions like this, but I don't think you need to panic. The fever may disappear as mysteriously as it appeared and doctors typically don't get serious about unexplained fevers unless they involve fevers over 101 for 3 weeks or more. But that's just a guideline.

Inflammation is a possible cause of fever so perhaps it's worth asking the doctor if that's a likely suspect in your case. You could ask for more diagnostic tests too, but if your doctor wants you to wait for now that's probably reasonable advice.

[topcow]

My counts began to drop sometime in the past 4 months. All my counts were normal back in August, last time they were checked. I only found out because I went to give a double red cell donation, like I do every four months, and was turned away because my hgb was 10.5. I followed up with my doc and he has rechecked my counts every 2 weeks. They are consistently falling, except my hgb, which is up since I started the iron pills. He says if my next cbc in Feb. shows more declines he is sending me to a hematologist.

[Neil Cuadra]

Thanks, I understand. I think you got good advice. If your counts don't recover then the hematologist is the next stop, to seek an explanation. If it comes to that then I hope that what's wrong is temporary or easily treatable.

Your experience with your son make you a well-informed medical consumer. That's an advantage since you'll understand what the hematologist says and you already know the basics of where blood cells come from. So many patients start out baffled by the terminology, and feeling lost and intimidated because they don't understand the nature of blood counts or what hematologists do.

Please let us know what happens.