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Old Tue Mar 14, 2017, 10:40 AM
kirag1964 kirag1964 is offline
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Join Date: Mar 2017
Location: Philadelphia
Posts: 20
Probable AA diagnosis - confused

Hello!

I am 52 years old, and in the process of having my bone marrow failure diagnosed. Many of the signs point to AA. However, the hematologist who I was initially sent to says I am more complex than he feels competent to deal with (I'm "over his pay grade"). So they are not able to complete the diagnostic process and/or discuss treatments, so I am now in limbo waiting to be seen by a specialist at UPenn hospital. (Is it normal to be transferred mid-stream because of the rarity of this?)

I know I should probably just be patient and wait for clarity from the medical professionals. However, I am frustrated and a bit scared, and since my current hematologist can't answer my questions (I asked about my reticulocyte levels which is when he made the "above my pay grade" comment), I am confused because some of my blood levels do not seem to fit the picture in a way I can make any sense of. I was wondering if any of you can help me make some sense of things.

My story so far:
I had a routine physical about a month ago and a few days later got a call from my doctor saying all my counts were low. Subsequent blood tests have confirmed this. This is a summary of my counts from the multiple blood tests I have had in the past few weeks:
WBC - 2.8-3.3
RBC - 2.1-2.21
Hg - 7.3-7.9
Platelets - 25-41
My red blood cells are also slightly macrocytic. Folate and B12 are normal.

I had a bone marrow biopsy and my bone marrow is quite hypocellular. My cellularity is 10%, which I gather is much lower than it should be (I should be at about 40-50% given my age). No blasts in my bone marrow. However, the rest of what is on that report is very confusing and my current doctor really wouldn't go over it with me.

Both the pancytopenia and low bone marrow cellularity point to AA - and I think a number of other possibilities have been ruled out.

However, this is really confusing me:
- despite having very low marrow, and low RBC count, my reticulocyte count in my blood is 75 which is in the normal range. This makes NO SENSE to me (how is my insufficient bone marrow pumping out a sufficient number of baby RBCs) and seems to totally not fit the criteria for AA. My doctor could not offer any explanation except to say that my "normal" level was actually "low" because with such a low RBC count he would expect my level to be high (???)

Can anyone offer a possible explanation?? Obviously my new doctor will go over everything and perhaps order new tests as well, but right now I don't have an appt until April 18th. They are hoping to move it up, but the doctor is currently out of the country and I am not sure when they'll be able to fit me in.

We believe that this snuck up on me over time, so while I am feeling pretty wiped out I am still functional. The worst symptoms for me are the anemia ones - feeling shaky, heart racing, out of breath from climbing one flight of stairs, blood rushing in my ears. I have always been super healthy (just signed up for a 10-mile run in May ) so I am very frustrated with not feeling well.

I know that you can't diagnose me, but any insights or expressions of support would be much appreciated.
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