Hi,
I was diagnosed / treated 5 years ago with Hairy Cell Leukaemia. Today was my annual consultation over telephone, where results of my blood test from last week were discussed. I’ve been informed that my platelets are low and need follow on tests.
I haven’t really felt poorly (have managed to avoid Covid so far too) and am pretty fit - participated in Ride London/Essex for Team Blood Cancer UK .
Will just have to wait and see how this pans out after next tests.
Has anyone else experienced something similar?
Take care all!
Hi @dmquinlan firstly good to hear from you and a great big thanks and congratulations for participating in the Ride London/Essex for Blood Cancer UK.
No, I haven’t experienced anything similar to you.
And I think that you have answered your own question by saying ‘Will just have to wait and see how this pans out after next tests’ as we are all very special, unique beings and consultants take a number of symptoms and test results into account.
Anyway I am not a medical person but please let us know how you get on and really look after yourself
Yes, you know that it is not the best thing to keep googling !!!
Perhaps diversion tactics are in order, something you enjoy.
Thanks for the link to your blog
So sorry to bother you was just lost and looking for any help i could get I’m a 32 year old male who has been suffering like crazy for the past 12-18 months intense sweating joint pain breathless and being freezing cold even in hot weatherwhich resulted in me seeing a cardiologist and more recently a Gastro doctor I’ve had a lot of blood work etc but latley I’ve had low red blood cells and iron levels to which has come as a shock as it’s very unusual in somone my age the gasto doctor dosent think it’s down to my stomach so I’m worried sick it’s blood cancer as my uncle had it years ago I’ve been bedridden for the last 2 months apart from getting in the car for appointments etc just wondering what’s the best way for a diognoise etc
Oh, @ross32 you really have been going through it and you naturally seem scared, stressed and anxious through the not knowing, waiting and not knowing where to go next.
I will copy your post to the Blood Cancer UK nurse advisors @GemmaBloodCancerUK and @LauranBloodCancerUK, but perhaps returning to your GP for any thoughts and referrals, but tell them how it is for you and the severity of your symptoms that are meaning that you have been bedridden for the last 2 mths. You must be loosing muscle strength being bedridden.
If you would like to talk to someone the Blood Cancer UK support line are there for you.
Please let us know how you get on.
Look after yourself.
Thanks a lot for the reply I’ve struggled to get to sleep the last few nights waking up sweating out of breath no appatite think I might phone an ambulance to make sure blood levels have not gotten any worse my mum has been in hospital on an off with a serious health issue for years so it’s hard to tell my dad how really feel friends also but stress definitely dosent alter your red blood count I know that much that’s what worrying me the most if it’s gotten any worse anemia our something
Hi @ross32. I am so sorry to hear how you are suffering and the impact it must be having on your daily life. I would encourage you to somehow get your blood cell numbers checked with what is called a full blood count (FBC.) Earlier in the year I really struggled with some of the symptoms you describe and it turned out my red blood cell numbers were low and my haemoglobin (Hb) level had also dropped. I required transfusions of red blood cells which helped me to feel stronger. Please don’t struggle on without telling someone. Thinking of you. Warm wishes. Willow X
Thanks so much think I’ll have to go to a&e today is I can not cope our don’t feel well enough to wait round for results etc the last time I had bloods taken last month they had come down a lot but my doctor thought it was stomach related but the Gastro thinks otherwise never felt so tired in my life
Just a question are low platelets a blood test i can request our something that shows up in your bloods I’ve had spine pain and leg pain for years to which I’ve ignored because a neuro put it down to a benign twitching & cramping syndrome which was visible after tests etc had a scan on my spine but was many years ago so sort of put it off also had alot of itching without a rash lately
Hi @ross32. A full blood count will include your platelet count as well as white and red blood cell numbers and haemoglobin level. I wish you well. Willow X
Yes @ross32. From my experience a full blood count is a standard investigation often done when someone arrives at A&E. I hope you don’t have to wait too long for the ambulance and you get some answers and some help. Warm wishes. Willow X
Hi @ross32 I’m so sorry you’re going through this worrying time. Have you got anyone around you at the moment to support you? Have you gone to A&E? We would really encourage you to if you’re feeling very unwell - it’s really important you get medical attention.
Also please don’t hesitate to give us a call on 0808 2080 888 if you want to talk things through or if there’s anything we can do to support you.
I’ve got my dad with me my mum is currently in hospital her self but she’s not been well for years just waiting on an ambulance to go to a&e to see if my blood count has gotten any worse as I say I’ve not felt right for a long time with different synonyms but my blood work has always bin ok up until last 3-6 months when my iron level folic acid red blood count has come down a lot
I’ve also been experiencing freezing cold hands & feet as well as chillls which I’ve never had before the blood count problem I’m quite a decent size fella so to be cold in hot weather has really scared me
Dear @ross32, it sounds like you are on your way to hospital and I am sure you will be well looked after. I suspect they will take some more bloods from you and examine you. Please do be very clear on how unwell you have felt as it is important for the team to assess you thoroughly. Have you taken a COVID test recently?
Do take care and keep in touch, Gemma
