I’m new here and wanted to introduce myself.
I’m currently awaiting a diagnosis of persistent lymphoytosis which I have accepted already as Chronic lymphocytic leukaemia (CLL). My GP has not, but the numbers and the years those numbers have been elevating can only equate to Chronic lymphocytic leukaemia (CLL).
It began in 2018 started 3’700 then 4’700 then reduced to 3’700 in 2020. In 2021 the numbers were in 4’000 and had met 4’600 by March of last year.
I was told this is ok, just reactive and not what would be Chronic lymphocytic leukaemia (CLL).
Happy I lived my life and then routine bloods in January 23 showed lymphoytosis of 5’000 feb 5’400 I had an infection so took some antibiotics and by end of feb my count was 4’200 but then in May 4’700 and July 5’500 …
I have seen another GP and they dont seem concerned still. They have said that usually if the pathologist feel its Chronic lymphocytic leukaemia (CLL) a blood film is done. But nothing has been done.
Anyway, I voiced my concerns of Chronic lymphocytic leukaemia (CLL) and we are to do another blood test and if still elevated we then move to speak to hematologist for next steps.
It is my understanding that a persistent lymphoytosis of 5’000 or above is diagnostic of Chronic lymphocytic leukaemia (CLL) and im a bit uneasy that they arent really taking me seriously.
I tried to speak to family but they are flippant and say stop googling there is nothing wrong.
Thats hard, because its not a google thing its a blood result thing over a period of years and its really upsetting to know in black and white something is wrong and have nobody take it seriously.
I had a blood film done last year but I had bells palsy so it came back reactive … That was 7’400 and all my cells wer3 up even red. I dont think that they should base their findings from then on what is going on now.
I’m so lost and confused. I hope its not Chronic lymphocytic leukaemia (CLL) but at this point there isnt much else it can be. I am not sick, no symptoms just worrying.
Hi @Txurnin a great big welcome to our forum.
We cannot give you a diagnosis but what I do relate to is your anxiety, worry and the not knowing which are horrible feelings.
I am glad however that you are not feeling sick and have no symptoms.
I was diagnosed 19 yrs ago and have been on ‘watch and wait’ or ‘active monitoring’ ever since.
I have not had any treatments, just regular blood tests.
In my experience family and friends just want to look on the brighter side and take my feelings away from me, it comes from a place of love on their part.
Perhaps write all your questions down ready for your next appointment and be pleasantly assertive.
Would a second opinion give you peace of mind one way or the other?
Please do let us know how you get on and be very kind to yourself
That’s wonderful news that you are on watch and wait and have had no treatment yet in 19 years May this continue for you
I’ve kind of come to terms with the likelihood of having Chronic lymphocytic leukaemia (CLL) because of how long the lymphoytosis has been there and how my numbers have constantly crept up.
I have seen a different GP but still they don’t seem concerned. They are however giving me another blood test and then speaking to heamotology if the count remains high [which it will]
I just wish they would ask for more tests I dont think not doing a blood film on a count over 5000 is wise, as to begin with it should be cbc and blood film and then more diagnostic tests with heam.
It’s hard to put faith and trust into doctors when they basically see a persistently elevated (and rising) count and do nothing. It began to rise in 2018 and has steadily worked its way from just above their labs normal to 5000 this year.
I understand that most people have higher numbers at diagnosis, but from what I do gather 5’000 > is alarming.
I dont have an infection and all my other bloods are normal. I guess I just want to know whats going on now.
Hi @txurnin I have just returned from my daily walk and I was thinking while I was out and you have probably thought of this direct question to ask but perhaps ‘why don’t you think I have Chronic lymphocytic leukaemia (CLL)?’ or ‘if you don’t think that I have Chronic lymphocytic leukaemia (CLL), what is wrong with me to have readings of 5000?’
We are very unique, complex beings, take care.
I am not a medic (but do have Chronic lymphocytic leukaemia (CLL)) and from what you have put in your post, I wouldn’t jump to the conclusion that you do have Chronic lymphocytic leukaemia (CLL) or another form of blood cancer. Your levels of lymphocytes can be caused by an infection of some sort and even stress. When Chronic lymphocytic leukaemia (CLL) is diagnosed, there are several other indicators in the blood tests which, together with lymphocyte levels, combine to indicate it’s Chronic lymphocytic leukaemia (CLL), so if your neutrophils and platelets, for example, are within the normal ranges, then it’s unlikely to be Chronic lymphocytic leukaemia (CLL).
I agree with your family, and urge you to stop Googling and trust your medical team - if they were concerned you could have blood cancer, you’d have seen a haematology consultant within days or a couple of weeks! It’s so easy to think of the worst case scenario, but as I said, lymphocytosis is more likely an indicator of something much less worrying. I hope this reassures you and you can trust your GP.
I have pushed for more tests and so in August we will do another cbc and see where my numbers lie at that time and take it from there.
It’s been slowly up and down over the past 3 years, though it has never gone back to the 3000 range.
Always been above 4000 and now this year hit 5000 in January by the start of Feb it was 5’4000 then reduced to 4’200 at the end of Feb and back up to 4’700 in May and then in July 5’500 all my other bloods are within normal range.
I guess we will see. I’m not going to leave it as it is, I will keep pushing until I have a reason for the persistent elevation no matter if its a sinister finding or a benign one.
I’ll update you once I get further answers from my next blood work and the next steps.
Oh @Txurnin I get confused as soon as a medical person goes into medical speak.
Have you got a specialist nurse, the person you saw or your GP you could ask that question?
My philosophy is that if it plays on my mind I need to do something about it.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses in case they can help.
Look after yourself and please keep posting.
Sadly I don’t have anyone other than the GP practice at the moment.
Heamotologist aren’t going to see me until reactive cause has been ruled out and my count reaches 10’000 or > persistently.
It’s currently at 5’500.
The Heamotologist did a blood smear and repodted atypical/reactive lymphocytes and asked to ruled out reactive cause and if patient remains well continue to monitor and refer if above >10,000 persistently.
I cant cope not knowing whats wrong. I have a follow up blood test soon and I am so worried this is higher now as it jumped from 4700 to 5500 in 2 months.
Hi. My story is bit like your story. I have had high lymphocytes since 2014. Between 3000 and 5000…my GP also said is nothing to worry. In august 2021 I had a blood test and lymphocytes 5000.from the laboratory they ask if I smoke. Yes, I was smooking one pack per day since I was 20. They did imunofenotyping that showed no ccl. I was having some mandibular lymphnodes bigedr and they decided to do more blood test,tumoral markers, ct scan of them. At the end I have recieved the diagnosis of PPBL because of the smooking. I quit smooking and in 2 months my lymphocytosis is not there anymore. Now I have normal count. I do not know if they are still atypical but the number is normal. I stay in Belgium
Good Morning @Txurnin,
I do hope you are doing okay today?
From reading through the thread i can see that you have already been given some great support. As you are likely very aware by now persistent raised lymphocytes ( lymphocytosis) can be caused by a number of conditions such as but not exclusive to inflammatory conditions & or a response to virus or infection. Of course blood cancer will always be mentioned when searching online. However should your GP feel your current or future blood results warrant a haematology referral it is unlikely for them to hesitate in doing so.
I do however appreciate your need for an answer and i do hope that by continuing to openly ask your questions with your GP you will be given both reassurance and monitoring.
Should you wish to talk things through please do know that our helpline is open 7 days- 0808 2080 888.
I have spoken to my doctors and the Heamotologist has said they suspect reactive process… Not malignant.
So at the moment we are looking at my other issues as my CRP is elevated and I have some other symptoms that could be autoimmune. So for now we are focusing on the process of elimination.
Of course we will still close monitor bloods and work with Heamotologist but I guess we are following their advice and ruling out reactive causes before jumpinh to conclusions. Its not too high and nobody not even Heamotologist is concerned just yet. We will wait and see.
I will update as soon as more news comes in, I have a follow up blood test in a few weeks.
Thanks so much for updating us. This all sounds reassuring and I’m pleased you have a monitoring plan. I hope they are able to get to the bottom of everything for you soon & you keep healthy.
Hi @Txurnin yes as you say any diagnosis is a process of elimination, ruling things out as much as in.
Your situations sounds a bit more positive now. I believe in celebrating all little wins.
Please do keep posting how things are going for you and please do look after yourself.
I’ve not yet had another blood test, but my GP has referred me to Heamotologist so things can be looked into further.
I personally think it’s the best place to be. If it turns out to be nothing, then so be it. But I personally do not like to keep on having blood tests that leave me in the dark.
Also, I have read something about bug bites and how Chronic lymphocytic leukaemia (CLL) patients always react bad. This is me too, I always end up swollen and red on the affected area. The redness is so ott for such a lil bite.
So you are still in a bit of limbo @Txurnin, let’s hope the haematologist can rule conditions out or in so you have some clarity.
As for bug bites I have Chronic lymphocytic leukaemia (CLL) and I find I get bitten more than my husband does and they look red and itchy, but disappear fairly quickly.
Although I walk a lot in fields and parks I have not been bitten much this year at all.
Look after yourself