Monocytic leukemia slips through the cracks

Posted by slkanowitz @slkanowitz, Sep 16 12:32am

Monocytes are a type of white blood cell (WBC) that increase and activate with infection or inflammation. They are reported on a CBC (complete blood count) as absolute numbers and a % of the total WBC count. For some reason I don’t understand, most labs say there is no established reference range (normal range) for monocytes, so high levels do not get flagged, which calls the Dr’s attention to it. Many health care providers glance down the page looking for hi/low flags to see abnormalities. Since monocytes are not flagged, they can be quite high and easily missed. I know 2 people who have had monocytic leukemia that was missed for several years. One progressed from chronic to acute very rapidly and died within a week. I want to warn people about this and suggest you always look at your lab results beyond the flags. Monocyte elevation can be just from infection or inflammation but certain levels should raise concern and be followed up. Usually monocyte % is less than 10, but in inflammatory conditions may go up to 15. Over that, especially over 20, is concerning and should be rechecked. If the count is persistently elevated, a hematologist should be consulted. Dr may suggest a bone marrow biopsy for further evaluation. I would like to see reference ranges established for monocytes so abnormal elevations don’t get overlooked. In the meantime, please pay attention to your lab results and ask for follow up if you see anything questionable.

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My most recent report lists this for absolute monocytes.

Reference Range: 200-950 cells/uL

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It seems the % is the one lacking the normal range, but both figures are important. Thanks for adding this reference.

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I would urge everyone to get, and keep, copies of all your lab results. I was diagnosed with chronic lymphocytic leukemia 14 years ago and have been getting IVIG infusions every 6 weeks since then. I also get labs done at the same time. Routinely I am assigned to a PA for a review of labs. While looking at my labs I noticed my abnormal lymphocytes had shot up dramatically and my lymphocytes had doubled in 3 months. Because none of those changes had been flagged on the labs the PA's weren't paying attention and just said "your labs look fine ." I had a routine visit with my primary and asked him about the lab results. He was alarmed and called my hematologist, which led to many additional labs and a course of Rituxin.
Please do yourself a favor and double check your labs for yourself. Don't depend on the doctor or PA to pick up on changes. It is YOUR life at stake, not theirs.

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The lab my PCP uses reports references ranges for monocytes as 3.5 - 13.2 % and 0 - 1.00 ABS. The lab my hematologist uses reports the same ABS reference range of 0.00 - 1.00 per K/UL (micro liter), but no range for %.

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@traillens47

I would urge everyone to get, and keep, copies of all your lab results. I was diagnosed with chronic lymphocytic leukemia 14 years ago and have been getting IVIG infusions every 6 weeks since then. I also get labs done at the same time. Routinely I am assigned to a PA for a review of labs. While looking at my labs I noticed my abnormal lymphocytes had shot up dramatically and my lymphocytes had doubled in 3 months. Because none of those changes had been flagged on the labs the PA's weren't paying attention and just said "your labs look fine ." I had a routine visit with my primary and asked him about the lab results. He was alarmed and called my hematologist, which led to many additional labs and a course of Rituxin.
Please do yourself a favor and double check your labs for yourself. Don't depend on the doctor or PA to pick up on changes. It is YOUR life at stake, not theirs.

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Was it just the increased abnormal lymphocytes that led to the course of Rituxin/ Rituximab or were there other factors? What level of abnormal lymphocytes?

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Just to put things in perspective, my friend who died from monocytic leukemia in May had monocyte % up to 38% for about 2 years that were overlooked and my brother in law currently has monos % at 28% (< 10) for 2 years. Just now getting evaluated because I called attention to it! It’s imperative to review your own results and ask questions! Bonus- you will learn so much and get lots of brain stimulation 😀

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