Neutropenia

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can I ask if anyone knows that if a haematologist says that your white cell count is low but it’s “ normal for you” then does that mean you will have neutropenia for your life time?

aabb

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  • Posted

    I feel like I’ve either replied to a post of yours before or at least seen one.

    Fellow neutropenia sufferer, here. It is possible for a “low” WBC to be your normal. You have to keep in mind that when the “normal” range was determined they just took all the results from the population studied and figured out which ones were in the middle and that’s how they got their testing ranges. It has been suggested to me that my low levels are my “norm” but I don’t believe it because mine continue to trend down, especially over the course of the last year. What was your latest WBC and ANC?

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    • Posted

      If the only thing wrong with you is that those particular numbers are low, then that may, in fact, be your “normal.” They’re certainly not going to kill you, alone. I’ve been walking around (and even working in a hospital in direct patient care) with a recent WBC of 1.9 and ANC of 0.2. It’s definitely a new low for me but I’ve not even really been sick, despite how grossly low my numbers are. The worst part is just feeling run down, like I’m exhausted and like I’m coming down with something but it never actually happens.

      My point is that you need to monitor your numbers, that they don’t continue to plummet and that your neutropenia isn’t caused by something sinister. If you have a documented history of low WBC/ANC’s over a course of time, that don’t widely fluctuate or decline, and no other symptoms or illnesses occur, you probably do just have a low norm. Just insist to your doctor(s) that they have ruled out the scary stuff. I had a very conservative hematologist at first who said, “It could be leukemia but I don’t think so. We should ‘watch and wait.’” I insisted on doing a bone marrow biopsy because I’m not the kind of girl who wants to sit around waiting for leukemia to ravage my body. He told me my BMB results were negative. I went to a new hematologist at Mayo who retested the same sample and said that it was not normal, that I had scarring in my marrow which indicated I’m developing something else, but it’s in development so we don’t know what it is yet. So, what I suggest to you is make sure your doctor is being thorough and if they’re not, find a new doctor. Don’t let them brush you off if your instinct tells you to keep searching.

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    • Posted

      I have had stomach problems for months now but didn’t mention this to my haematologist as I didn’t think it was related to my bloods. I did mention it to my own GP who gave me meds and said I should have said to the hospital doc. My own GP said I have to continue with my stomach meds as they are helping a bit. I go back to the hospital in January so I will see how I feel then. 

      Aabb

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