Hello everyone, I am in a terrible state at the moment.
I have posted before but thought I would some more detail as things have moved forward a bit after my last blood test/
I won’t go into details about my symptoms but I have reason to believe I may have Leukaemia, due to some odd blood readings.
I have had a very high ferritin reading since February and although my main red and white blood cells appear normal, the haematologist has noticed that my Basophil count is at .15 ( high is . ) and my monocyte is at .85 and high is 8, he has asked that the blood test be done using a’ blood’ film where the blood is examined by a human, rather than the ‘auto’ system where a machine is used.
As I said I do have other symptoms but wont bore anyone with those, anyone have any experience of blood results as above? I now high basophils can signal Leukaemia on reading about it but not sure what is classified as high, .15 doesn’t sound a lot but in theory that 50% higher than the normal high reference point
As for the title of this post I truly believe that due to have a number of big CT scans has put me into a position which could have given me Leukaemia. Hence the question.
Hi @Red1, it sounds as if you are in a terrible state at the moment, and if anything like me the fears, thoughts and feeling are whizzing around in your head. It sounds a very scary place. I cannot answer your health diagnosis questions but we are all here to support you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk. What helped me was to write down all my questions for my medical appointments and make sure I also ask those follow up questions. Have you got any support, sometimes I find taking someone with me to appointments helps? When is you next appointment?
@Red1 I am so sorry you’re in such a terrible state - I can only imagine how worrying this must all be for you. When is your next appointment with the haematologist? Have you talked through these worries with the clinician?
Thanks for asking I am not doing very well. It’s a bit of a long story, but my blood results are in general within normal limits, slightly high on Basophils very high on ferritin. My Gp is reluctant to progress based on those results , I contacted a haematologist privately he has asked fir a Blood Film test, our local NHS won’t do that with my blood results being what they are. So I went to a private GP, got the test done but then it gets sent to a central lab, unfortunately I did it Friday and for whatever reason it didn’t get processed within the required 24 hours lead time required before the blood is not deemed viable to do the film tests. So now I have to wait til Wednesday do get another go, this time we will prime the lab to expect it and mark it urgent so getting the results Thursday. I am beside myself with worry if you want to know the truth.
Oh Alan, I am not surprised you are feeling beside yourself with worry, shock and waiting are horrible places to be and everything seems to move so slowly.
I was diagnosed with a Leukaemia in 2003 and those feelings are so similar to mine at the time. I felt I would be diagnosed and immediately be offered a treatment regime. However I was put on what is called ‘watch and wait’ or ‘active monitoring’ and ever since I have had regular blood tests which sometimes fluctuate. I feel a very lucky girl. It does mean I have learnt to live with the symptoms I was diagnosed with. My diagnosis has given me the opportunity to look at myself and really get to know how I tick and that helps me manage my symptoms. This is just my experience. Take care and please let us know how you get on so we can support you.
I am so sorry to hear that you’re feeling like this @Red1, though it’s totally understandable. i can only imagine how tough it is for you during this uncertain time. Alan, would it be helpful at all if one of our support team gave you a call to chat things through? If it would be of any support to you, please feel free to private message me (just click on my name and then the little envelope) and let me know when would be best for you/best number for us to call. Or you can contact us free on 0808 2080 888.
Did the private haematologist or GP talk to you about what they’d be looking for or looking to rule out, in the blood film test?
Hi Alan, my symptoms are well the big one is fatigue which I now realise is brought on by what personally stresses me emotionally and physically. I also do not deal with what personally stresses me well and that also brings on my fatigue. My fatigue can come on immediately or up to 48 hrs after I have overdone it. I sometimes need to have a nap, a duvet dive or some fresh air and appropriate exercise. I am also prone to different infections, my inner thermostat is useless, I had weight loss. I hate being out of control !!!
Hi, well I have had two blood films done, the first one showed some issue related to my red blood Cells, however it was considered that this was due to some changes caused by the anti coagulant used in the blood tube. The second one however showed all cells to be normal.
@Red1 Hi Alan, it’s so good to hear from you, and thank you so much for letting us know how you got on. How are you doing? How are you feeling after these results Alan?
Please do keep reaching out Alan, you’ll always have the forum community for support
I am still getting pain in both hips/thighs and back, since the beginning of this year this has got worse.
As I reported about my second blood film did report and I will quote exactly what it says ‘ all cell populations appear normal’ however it does also say ‘occasional small platelet clumps noted’
Now the first blood film report said also that
‘Occasional platelet clumps seen’ and ‘ red cells show mild Anisocytosis’. ( anisocytosis means red cells that are unequal in size) To be clear looking at platelet clumping it’s suggests that quite often this is due to the anticoagulant used in the test tube containing the blood, and also suggests that Red cell Anisocytosis Could be caused by Platelet clumping, so in essence we took the first film to be invalidated by that, hence doing a second test.
So all looks good do far. However the second test also included a FBC most of which looked ok, apart from two readings, that being the MCV and RDW being slightly higher that the reference range but for me more importantly Seem over the last couple of months have gradually increased, as both these measurements relate to red blood cells and in particular size of red cells, I am slightly concerned that maybe I may have a problem with red blood cells. Not sure what that may mean but it’s a consideration , I am not obsessing about it but it’s in my mind.
Al it is never stupid to feel still in shock and quite worried, I have found my emotions are always on high alert when it comes to medical matters since my diagnosis in 2003. Also for me if I have a pain that is getting worse I sometimes have to persist with my medical team and tell them my fears and worries. I have realised nobody is a mind reader and I always expect others to know how I am feeling, what I am thinking and more importantly what I would like. Take care of yourself and keep posting.
@Red1 and @Erica I hope you are both doing okay? @Red1 it does sound like you understandably have a lot of your mind.
@Erica I would definitely echo you Erica! this is something the support team always want to reassure you all of, feeling shocked and worried are two very natural emotions, which we would always really encourage you to share and talk about- and never feel like you have to go through it alone.
Like you say, Erica, if there’s anything you still feel concerned about or feel like you need further information on, please never feel like you cannot go back to your treatment team. It’s so important you feel informed and supported.
