Confused

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I have had blood tests every month this year as they have discovered that my White cell count is going down. It is 2.8 and my neutrophils are 1.2. I haven’t had a bug/cold etc but haven’t been feeling good for about a year. Can anyone explain why this is happening? My doc said I have neutropenia and if my count doesn’t go up she will send me to a haematologist.

aabb

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  • Posted

    See a Hematologist!!!  From the little information you give, it sounds very familar.  Last year I was diagnosed with a blood diorder called Mylocytic Dysplashia.  Low red cell count, low white cells, low hemoglobin., low platlets.  Felt exhausted, weak.  Hematologist did a bone marrow examination to confirm the diagnosis.   After 8 months of chemo, and monthly transfussions I am now in remission.  With a low white count and a low nuetrophile count you are very prone to infections.
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    • Posted

      All my other bloods were fine. But I thought that you only get chemo for cancer, didn’t know you get it for blood disorders. Hope you are keeping ok. It’s a bit concerning as my mum had breast cancer 10 years ago which she got through greatly but unfortunately took Lymphoma cancer 3/4 years ago. Thankfully she has been in remission and doing great. The cancer thing is always in the back of my head.

      aabb

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  • Posted

    Now I am Confussed!  If what you wrote at first is true, you "blood" is not fine.  You said your red, white and neutrophils were down.  Is that right?   If true, that is NOT FINE.  The "Chemo drug's  given for Mylocytic Dysplashia is NOT the same kind or strength as those drugs given for cancer.  Nor dose it have the side effects of cancer treatment.   How old are you?

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    • Posted

      It was only my white cell count that was low not my red cell count. My neutrophils are down also. I am a 47 year old female.

      aabb

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  • Posted

    I had told my husband I felt like my immune system was poor for a couple of years. Little did I know that it was literally the case. No big infections but frequent mild-to-moderate episodes. I happen to be a nurse so I noticed my white counts on my own blood work, which 3 different doctors never bothered to share with me. Over the course of the past 18 months, my counts have yo-yo’d and trended downward. My first hematologist was comfortable with a general diagnosis of “neutropenia,” without further testing to determine the cause. He also didn’t want to treat me even when my counts got really low (WBC 2.1, neutrophil 0.3) unless I got sick enough to be hospitalized. Since I’m a nurse in a hospital and have a greater exposure to germs, I sought a 2nd opinion at Mayo.

    My new hematologist retested my bone marrow biopsy samples and did additional blood work. I have been diagnosed with autoimmune neutropenia because I have Hashimoto’s. But most importantly, I’m getting treated in certain circumstances. I’m traveling to London for vacation (I live in Florida) in 2 days and my counts were low so I’m on day 2 out of 3 on neupogen injections. Not everyone has side effects with G-CSF (neupogen, etc) but I had severe pain and nausea on night one. Just took my 2nd dose so I don’t want to say it’s always painful, as some have reported a difference between doses, side effects, and timelines. But if it’s always as painful as last night was, I will definitely be reserving neupogen for extreme circumstances.

    In your case, I would insist on seeing a hematologist. And my first hematologist recommended not bothering with a bone marrow biopsy to rule out leukemia, etc., but as a nurse I insisted on it. I refused to “watch and wait” to see if I had leukemia. Luckily, I don’t but my biopsy was abnormal. Something is in development in my marrow that is considered “sub-clinical” which basically means something is brewing but what it is can’t be determined yet. My new hematologist thinks it may be lupus, which won’t show up for 5-10 years. So I’m not going to worry about that yet but I feel so much better with the answers and treatment my new doc hasn’t given me. But my best advice is don’t wait on answers. Find a doctor who will figure out exactly when your counts are consistently low.

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    • Posted

      Thank you so much for getting back to me. I am going for my 5th blood test this year to see what my levels are again. If they are still done I was going to make an appointment for my GP to see what’s going on. I must say I do worry for time to time as I am higher risk of cancer as it runs in our family. 

      Aabb

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  • Posted

    Definitely ask to see a hematologist if your counts are still low. Certain conditions that include neutropenia could either be or put you at more risk for cancers. NOT that I’m saying you have cancer. It’s just better to be certain. The type of neutropenia I have is not the kind that has a huge risk of that, although my abnormal biopsy results could be pointing toward developing one of the blood cancers. But my doc thinks it’s more likely Lupus in the works. Don’t stress family cancers too much. Be alert and aware but don’t let yourself feel like you’re going to get cancer just because it’s in your family. Stressing about it won’t improve your situation. Staying level headed, doing your research, and getting proper care from a doctor is all you need. Take a list of questions to each doctor appointment and, if possible and permitted, audio record your appointments. My hematologist went through so much so quickly on the first appointment that I felt overwhelmed, even as a nurse. Listening to the 2nd appointment afterward helped me de-stress. And it made it easier to explain to family and friends later.
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    • Posted

      Again, thank you for your time. I don’t worry about things in life. If it is for you then so be it. I am hopeful that my results must be getting better as over the past week or so I feel a little bit more human. My own GP did do an anti bodies test which came back clear. I think she must have been checking lupus as I has sometimes have a rash on my face and body. I will let you know next week of my results when I get them. 

      Aabb

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    • Posted

      Just a little update for you. I was back yesterday to get more bloods done. My level from the last time had went up from 2.8 to 3.4 which is great but unfortunately I am in bed with a kidney infection now. Hopefully next week when I get my results back it has continued to go up. 

      Aabb

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    • Posted

      I’m SO glad my doctor had me do 3 doses of G-CSF before going to London. I don’t live in a big city so I had forgotten how vulnerable I am in them. I don’t always know when my numbers are low because I don’t get febrile episodes (yet) but my healing time is definitely prolonged when they’re low. I tend to feel exhausted, too. Good luck. 
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