Advice please!

Hi, I am new and would like to ask a question if possible. I have been feeling very tired of late, more so than usual. I am a type 1 diabetic with fantastic control. I went to the doctor for some bloods and it came back saying that my lymphocyte count was high. 5.41 per 10*9 per litre. Normal range is 1.0-4.0 My doc has now sent me for screening for markers for leukaemia and lymphoma. What I would like to know is this high enough for CLL? I thought the level would have to be higher than 5.41. The pathology report stated that this is consistent with CLL or Lymphoma or a vial illness. I have not been ill nor had any colds or flu's. I am kinda freaking out about this. I know there is not much more I can do till the results come back.

Thank you

8 Replies

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  • As you noted, 'The pathology report stated that this is consistent with CLL or Lymphoma or a vial illness.' You can have an illness and not be aware of it - which is termed sub-clinical, though you mention you are experiencing tiredness, which could be a symptom of this un-noticed illness.

    You haven't stated your age, and it may reassure you to know that the median age for a CLL diagnosis is around 71, though we have a few members under 40.

    While you need a lymphocyte count of over 5 to meet the criteria for CLL, there's a lymphoma form of CLL called SLL, where you can have swollen lymph nodes and little to no increase in your lymphocyte count. Given you have a raised lymphocyte count, the marker screening your doctor has arranged is probably a Flow Cytometry blood test, which looks at lymphocyte cell markers to see if there are any cancer clones and if so what markers they have to determine which lymphoma/leukaemia is present.

    Hopefully your lymphocyte count will return to normal and nothing untoward will be found in your screening/testing. If the testing confirms you have CLL, then you have found a very supportive community with a huge amount of information to help you understand how to live better with your chronic condition and work out which treatment would suit you best IF you ever need treatment. About a third of us never need treatment.

    Neil

  • Hi Neil,

    Thank you for your reply. I am 38. From memory I have had this a few times (the high reading) but the previous doctors have never worried about it. The doctor today did ask me if I get or have swollen lymph nodes and I told him I get one coming up all the time on my jaw which is small and very tender but it seems to go away. I am sure as you said I could have had an illness and been unaware.

    Thank you so much, I appreciate you taking the time to reply. I will now await my results.

  • Hi! My husband is 42, has T1D too (also super control and really healthy) and was diagnosed with CLL earlier this year via a node biopsy after some minor neck node swelling that lasted a year because his count was only 4.9. I hope your result is that it's nothing to worry about! But just wanted to say good luck and we are in a similar boat if you have questions.

    Mindy

  • Welcome, Hopefully this is just a viral issue. What additional testing was done? I second what Neil said below:

    "Hopefully your lymphocyte count will return to normal and nothing untoward will be found in your screening/testing. If the testing confirms you have CLL, then you have found a very supportive community with a huge amount of information to help you understand how to live better with your chronic condition and work out which treatment would suit you best IF you ever need treatment. About a third of us never need treatment."

    Most freak out in the beginning, but IF you are diagnosed almost all patients have plenty of time to research and come to terms with understanding their disease. As a well controlled diabetic, you already have the "programming" to do what is needed for the best possible outcomes (medication compliance, diet, lifestyle changes, etc.) Stay away from the internet till you are diagnosed. Let us know what results you get.

    Best of luck, hope you don't join the club.......

    Nathan

  • Thank you everyone for you advice. I will let you all know how my results pan out. After reading what has been said I am sure it is nothing to be alarmed about and I just have a doctor who is vigilant.

  • Hello I have had a similar experience. I had raised lympochyte count for years. Everyone i spoke to told me nothing and stated that it was "most likely" a viral infection. As it continued to remain raised i pushed for a referral to haematology and i have recently been diagnosed with CLL total 15x10 with lympochyte 11x10. I was absolutely shocked. If i were u i would get all copies of blood tests and next time ask for a follow up. No one at my GP mentioned a pre cancerous condition and kept mentioning viral. I hope i am not scaring you but this went on for years. I have suffered from fatigue and almost believed i was getting neurotic. Whilst the diagnosis was not good i believe knowledge is power. I have since seen letters which mentioned CLL 18 months ago but i was never told. As i had a busy life i was happy to take the GPs at thier word and didnt challenge.

    I am keeping positive and changing my diet and exercise habits and aim to live with CLL with a positve outlook.

    I hope it is not CLL but if it is then this community is your source of support. You are not alone.

  • Sorry Nathan I missed your question about what testing is being done next. In my words it was something to do with markers? As AussieNeil said Flow Cytometry blood test. I am assuming these are the same thing. Newcastle1962, the new doctor I have started seeing ( I just moved to QLD) gave me a copy of all test first blood tests he did, which sorry I failed to mention was mainly for my diabetic check up as every three months I have to have what's called a HBA1C. I thought my extreme tiredness could have been due to diet changes but that was changed months ago and I had heaps of energy etc, but as I said my diabetes is well controlled and cholesterol is perfect!!

    Again, thank you all for your advice and taking the time to reply. Tomorrow I find out what's happening and I am sure it will be all good after reading what you have all written.

    Thank you

  • Ok so back from the doctor no news. Apparently they have sent my bloods of to Brisbane. So we wait. I am sure all will be fine

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