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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Worried about white cell results and re test :-(

Discussion in 'General ME/CFS Discussion' started by Jemima37, Jun 23, 2017.

  1. Jemima37

    Jemima37 Senior Member

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    UK
    I have to have a blood test repeated in the next 2 weeks and I am terrified.

    I had a blood count done in November and all was totally normal. Neutrophils were about 4 and lymphoctyes 2.2. All normal and good results. Then in March I had another full blood count, liver, kidneys etc... It showed my white cells were slightly out, the neutrophils were 1.6 (2-7) and Lymphocytes 3.98 (up to 3.65 is normal on the lab range) I repeated it 5 weeks later and neutrophils had increased to 1.8 and lymphocytes had raised to 4.45 so GP referred me to a haemotologist who wants me in to repeat the FBC and he will look at it himself under a microscope to check the white cells himself and then go from there. It has been worrying me is it blood cancer but my GP says it's nothing like that. I won't relax though until the haemotologist has taken a look.

    I am just trying to reassure myself that if he thought my figures looked bad he wouldn't wait from April to first week of July to check them again.

    My total white cell count is normal. I haven't been ill or catching bugs but at the time of my bloods in March and APril I had a nasty outbreak of cystic acne all over my chin. I used to suffer from it a few years ago and during that time my neutrophil count was low at around 1.6. My lymphocytes to my knowledge were always normal but the GP told me my neutrophils were low just because they were out fighting my acne as it was severe. She never referred me to the hospital. So I am worried why this GP has and being silly Googling I read leaukemia etc raises lymphocytes. My acne was severe over the spring, huge cysts up and my glands too were up in the jawline and chin because of the infection. My GP said he wanted to refer me anyway ignoring how bad my acne was and that it could be the cause in my raised lymphocytes.

    I am a terrified mess. In the last 2 months my fatigue has got much worse and I am exhausted every day, weak legs, crashes more frequent.... I am now scared I have blood cancer. it's sent my anxiety racing.

    Can anyone reassure me at all? :-(

    Julie
     
  2. pattismith

    pattismith Senior Member

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    Hello Julie,

    don't worry, your lymphocytes are not that high, it could be just an infectious reaction. And the good news is that an haematologist will have a look at it, maybe he will find what sort of infection it could be!
     
    MEMum likes this.
  3. Mohawk1995

    Mohawk1995 Senior Member

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    Julie,

    Your experience, although different in specific details, seems to be not uncommon among those with ME/CFS. Because there are so many issues with the immune system in this disease, I don't think that "normal" values are really normal for those with ME/CFS. Mind you, I am not a physician and definitely not your physician so this is just from experience (personal and as a physical therapist) and from reading a lot of case histories on ME/CFS. The disease is always the "900 pound gorilla in the room" meaning it cannot be taken out of any conversation on what is going on with you. No matter what is happening the conversation should be you have "ME/CFS and _______" .

    I don't have any idea whether or not you may have something more sinister going on. Sounds to me like your physician is on top of it and sending you on to a specialist appropriately. The problem is that with ME/CFS you are already in a crisis situation and so it is just human nature to go there with anything else that comes along. It is actually human nature to think the worst when we don't know for everyone, but even more so when you live with a chronic disease. How we (I'm including myself in the medical community) have treated these type of disorders has just added even more fuel to the fire.

    The truth is that your change in fatigue and crashes could be totally related to the ME/CFS and yet we know so little we can't explain it. This would be the first and most obvious reason. It could be that there is something else going on that is not something like cancer, but made far worse because you have ME/CFS. Lastly it could be something more sinister, but to me that would be the least likely of the three possibilities.

    The internet especially for those with chronic diseases can be both a blessing and a curse. Blessing in that it opens up greater awareness and allows people to connect with others sharing in the same suffering. A curse in that there are so many facts, mis-truths and mis-interpreted facts out there that it can create very high levels of anxiety unnecessarily.

    If I were you, I would stick with what my doctors are telling me and wait to see the Hematologist before getting online and spending any more time being exposed to what it provides. You are of course going to continue to be concerned about what is going on, but better to not add to that if you can.

    I along with others here I'm sure hope that your visit will be helpful and that you will receive the good news that it is not another very serious disease to add to your already overwhelming burden. :thumbsup:
     
    pattismith and MEMum like this.

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