Neutropenia....any body have an understanding of?

[cositjustisok]

Getting bloods taken for a variety of reasons and know something is concerning the doctor as they are taking blood now every 2 weeks!!. I go today hopefully for some information on why, but have seen this on my most recent blood results. I do know it is a reduced number of neutrophils (part of the white blood cell make up) but on googling..(I know I deserve a good slapping for this) but it is bringing up things like Leukaemia (sp) and I am frightened.

Hi cosit. I don't have any advice I'm afraid but thought I would just say that I hope it all turns out OK for you and bump the thread.

I think that psychomum has a daughter who has been tested for neutropenia so she may be able to advise if ahe sees the thread.
xx

and this is why googling is a bad bad thing!!

try not to fret (easier said than done I know), but if they really did think leukaemia they would have had you in hospital by now.

there is a mumsnetter here whose DH has recently been DX'd with it (lisad123), and her DH had really high WBC (white blood cell count) and was asked to go straight into hopsital within hours of his blood test.

my DD3 has recently had lots of bllod tests (she was having 2 to 3 per week for 8wks) as she had low neutrophils, and has now been DXd with cyclical neutropenia, and is on long-term anitbiotics to help with infection etc.

I have been assured that altho there is a risk of leukaemia, it isn;t a hugely high risk really and try not to worry. I do, as I am her mum, but it is not at forefront of my mind when I worry. Forefront os just that when her neutrphils drop (hers drop down every 3wks), she is at higher risk of infection and illness.

you dos should be able to explain more, but in the meantime, please try not to worry tooo much.

Yes step away from Google cosit.

If it was me I would bring up what is worrying me the most when I saw the doctor later, in an attempt to get some reassurance { if he doesn't just give you the all clear }.

Let us know how it goes.

Hi Winetime ..nice to speak to you again...hope you are well.

Thanks psychomum...have read the thread on your daughter...hope she is doing well now. It is a worrying time as a mother but you seem to be coping well..think it is the initial shock that is worst really for our children..then we just have to be strong and get on with it...cause we have to really. Can i ask what her lowest neutrophils where please?..mine I think have always been on the low side and sometimes normal though still on the low side of normal.

I am worrying and promised I would not google..but then I do and get all annoyed with myself for stressing out..ahhh!!

Thanks for taking the time to reply ladies.

hers drop down to 1.2 at the lowest, then up to 5.9 at the highest.

she is 'lucky' tho, as below 1 is classed as severe. she is now on her second month of antibiotics tho, and so far, no missing school, so I am already seeing the benefit.

she is even able to go swimming and not have time off (najor acheivement as swimming makes her chilly, and her bodys reaction to chill is bad, and used to make her ill for a few days).

I am actually also needing regular bloods too for low WBC, altho not as low as DD3's. not sure what is going on with me, but tis just the WBC for me, not nuetrophils.

how are you otherwise???

I really feel ok'ish...but always tired and always always very very cold....and would never consider going to the pool ever again after last half term when I did go swimming and was absolutley freezing and took ages to get warm again!!!..such a wuss I thought but maybe it is my blood making me so so cold. I am going ot ask the doc how long this has been going on for as I know my WBC count was generally always low but only seen this Neutropenia thing recently so maybe it has jsut happened. Is the other white blood cells not as "dangerous" if it goes low as the neutrophils?..so so confused

TBH, I don;t really know much about any of the counts bar the neutrophils, and even then, I only know what it means for my DD3 and the risks etc for her (IYGWIM).

I know that when they were testing her tho, her WBC count itself was normal, yet her neutrophils were low, which sturck me as odd (her platelets were out too, plus eospnophils(sp?)) but I was reassured that they were just a reaction to her having the blood tests rather than anything else to fret about.

with me, my neutrophils are normal (normal is between 2.5 and 7), but my WBC is low (mine is 3.4, normal is between 4 and 9 IIRC).

tis all complicated!

I see the difference now..thankyou Psychomum5. Ny WBC count has always hovered round the 4...or more than likey 3 - 4. However the fall over the last while seems to be due to the neutrophils falling quicker than the other readings..although all not great really. Will let you know what doc says today as I only have a scatty few numbers here to work off and he will have them all. Thanks for all your help PM5

you welcome.......let us know what he says

Update for those interested..... Doc was absolutely lovely and explained things as best he could and although it says "Neutropenia positive" on my notes he is not diagnosing me as that...jsut yet anyway. He is hoping by taking more regular bloods he will see what is happening and will then make his diagnosis. He was of the opinion that whilst 4 is the minimum standard for WBC count and 2 was the std for neutrophils..a lot of people can be quite well and are jsut below the range. Explained this like when stds where originally set up it was taken that 95% (explained it with the bell diagram that I remembered from my maths/statistics lessons many years ago!!!! would be above 4 (full) or 2 (neutrophils) and 5% would be outside this range and be quite well too. So have to keep going for bloods and wait and see what he comes up with....

Thanks Physcomum5 for your help this afternoon...will update as and when I know anything else.

oh I am glad it was a good outcmoe and that he is keeping a good eye on you

keep us updated.

cositjustisok: having lived a healthy normal life for 24 years or so I was in a clinical trial once that required twice-weekly blood monitoring, and on the fourth week the haematology consultant called me in and said I technically had a neutropenia and was I feeling well otherwise? I said yep no problems and we discussed how well I fared during various bacterial/viral infections (no better or worse than anyone else actually), and he said well looks like your normal range is below everyone else's. Therefore I am supposed to tell any docs that investigate me in the future that I have this normal low neutrophil level to stop them latching on to it as a factor. That's if I'm conscious and have a reasonable GCS

Well here I am another 20 or so years later still doing fine so far and waiting for that time when i need to tell the docs this piece of valuable info.

So yes the normal ranges are designed to flag up possibilities, but never diagnostic on their own. Also need to look at the differential absolute AND percentage ranges as you can be low in one but normal in the other. Good luck and try not to worry just yet.

Thankyou Musukebba for taking the time to post that, it really is very helpful..more so because my sister reminded me last night that she remembered many many years ago a doctor testing me for sickle cell aneamia from what he had seen on my blood results..we are now thinking it was something like this..ie:low neutrophils..and i was as well as could be. Therefore maybe we are the 5% that do cope well with low neutrophils. So pleased that its not jsut me!!