Good Morning Good People ! Question - Does your GP (NHS UK) have specific guidelines / timelines as to when a patient should be 'referred' for further tests with regards to a raising white blood cell count ? Clearly there will be many other contributing factors, considerations involved but would be interested to know as since my diagnosis in Oct 16 i've found out that one of the Doctors at my practice had 'Flagged' ( whatever that means ? ) my notes 3 years ago - WBC of 14.9.
Since that time and indeed before I'd been back and forth with numerous infections or symptoms i.e. sinus , waterworks, stomach,dry eyes, dry mouth, neck pain, headaches ( No lymph swellings though ) but clearly , having seen my screen notes, shared by a relatively new GP to me in the practice, a continued WBC fluctuations all above or at 10 - Which they did not inform me of ! FYI A lot of my tiredness this past few years I had been putting down to the menopause so had it been at any other 'time in my life' I feel, I know I would have pushed much harder to try and 'sort' myself out. As, like us all, I was and still am sick and tired of being 'sick and tired' With the 'odd' day off for good behaviour ! Many thanks in advance - Jools x
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Juliette02
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Yes each health authority has different guidelines for referal. GPs are expected to monitor those with low counts. Yours are low. Me, I was refered by the GP to achieve a haematology appointment within 7 days but my count was 200. I was not overly tired. No lumps but breathless, the reason I went to the GP.
Welcome Jools and glad you've joined us. It's very early days following your diagnosis last Oct but you obviously suspect that you may have had CLL much longer. That's not unusual it seems, particularly in the U.K. where some GP's can take a paternalistic role and decide to watch and see if rising levels could be attributable to self limiting infections.
By the time I asked for a definitive diagnosis from the haematologist, my ALC was up to 9. However, I discovered during the previous 3 years that my GP was 'having the conversation' with the haematologist. There's part of me that is grateful that I was spared those years of additional worry but it's arguable that the GP should have informed me immediately.
I don't think there are definitive guidelines. It seems to be a judgement call by the GP based on a number of factors and that can work as long as the patient is subject to regular blood tests (as I was for the meds I was on).
Sorry to hear about your fatigue and hope it doesn't become debilitating. I was dx 4.8 yrs ago and still on W&W though not expected to dodge treatment due to increasing levels and declining immunoglobulins. Ask the doctor to check your immunoglobulins if you're experiencing frequent infections and make sure you have the flu and pneumonia vaccinations. Keep well.
Again not sure if there are definitive guidelines. I was diagnosed with CLL in Feb last year. My GP had suspected something wrong 3 years ago as my WBC was rising yearly at my annual well man check. Once it went over 11 he referred me top oncologist. He said he thinks CLL started 5 years ago!
Well glad you got a good referral eventually Sparky 1086 and hopefully all is as well as can be etc When they finally decided to refer me marking it urgent - The appointment clark came back with a date for 4 months time ! It was only my persistence that we manage to get it down to 6 weeks !
Well good for you Sparky ! I didn't, at the time, know why I was being referred - The GP on duty had said 'a few test but nothing to worry about' ! Only found out about the urgent note after I'd been to see him. He then retired !
Thank you for your reply and immunoglobins advice etc much appreciated.
With regards to my 'guidelines' question its beginning sound as if there are none ? And it's based entirely at your GP's discretion - And knowledge ?? ! ! - Depending on which one you get to see at the practice ! I've found that trying to maintain a consistent relationship with just 'the one' is increasingly difficult given the random by 'chance' nature of the 8.30 am scrabble of the morning appointment system in this country .... A method that can potentially cause delay in diagnosis.
I think that ALL information, as and when it occurs, should be shared so we can make our own choices around our health and ultimately our lives ! And if its down to money then give an option of paying for the appropriate tests - ( However ND I respect your own personal experience and post rationalisation etc )
I suppose if it's there it's there For me though knowing sooner - If indeed it had been confirmed 3 years ago, I would have potentially made some very different decisions. Particularly around life style, business and finances etc Which I'm sure applies to many folks here.
Oh I absolutely agree with what you say Jools and of course we have the right to receive all medical information and to act on it as we deem necessary. This subject has been discussed on here many times over the years. My points were indeed 'post rationalisation' and probably based on having a long term relationship with the same GP (though we don't always agree on things and I can't always get to see him).
I can distinctly remember having a conversation with him more than a year before my diagnosis and at that time, like you, I was having a few infections that just might have explained the higher WBC results. It was obvious to me that he too lived in dread of me receiving the CLL diagnosis and of course there was the possibility that my elevated ALC could have been due to Monoclonal B-cell lymphocytosis. He did tell me at that stage that even if there was an underlying reason for the slight rise in my ALC that nothing would be done at that stage. So in my case all it did was give me a couple more years without the 'knowledge' and in my case I'm not sure knowing would have led me to change the course of my life.
However, we are all different and it is perhaps a cause for concern that there's no definitive guildelines for when and how patients are advised and perhaps doctors rationalise it by saying many people do seem to have elevated WBC's without malignancy.
When I was diagnosed 8 1/2 years ago my blood tests results were only slightly out of line, WBC 14 and Lymph 11 but my GP called me back for a second blood test and when this had similar results he called me back and I had a long appointment and a referral to the Haematology dept of the local hospital within 2 weeks. I did not have any symptoms and am still in Watch and Wait
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For me though knowing sooner - If indeed it had been confirmed 3 years ago, I would have potentially made some very different decisions. Particularly around life style, business and finances etc Which I'm sure applies to many folks here. 
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