Hello again - updated name and avatar. Previously Dogsta. Well, after a strange 3 or 4 weeks I finally was given a diagnosis of CLL by the Haematologist but after checking on here and elsewhere I am now a bit confused. The flow cytometry came back with MBL (CLL phenotype) but just below the threshold for CLL diagnosis. 4.7 v threshold 5.0 for the absolute B cell count. The consultant went through everything very quickly, speaking very fast and looking at the screen mainly but she used the phrase “well it is below the threshold but I’m calling CLL” apparently based on other results from the FC test. My CT scan was clear apart from a known issue with the prostate. There are no palpable nodes. I was handed a booklet/guide on CLL and given a card with details of the Clinical Haematology nurses who might call me next week.
I did 2 blood tests at the hospital. One on the day of first appointment and then a call back a week laterfor another blood test, apparently for the flow cytometry. (Results attached). There was however a bit of a curve ball thrown in to the mix. The first blood test revealed a low B12 score (130) and I was given Cyanocobalamin 100mcg daily.
I did another B12 related test for Intrinsic Factor I think - and everything handed back to my GP. 6 monthly blood tests, as expected.
Some questions for the experienced and knowledgable on here:
Do I need a review or second opinion?
Will a CLL diagnosis affect things like travel insurance more than a MBL diagnosis?
Do I just go along with the 6 monthly check ups and bloods?
Is fixing the B12 deficiency the most important issue - especially as it now appears to be the source of my recent health issues?
Is there anything in the flow test results that might explain why the consultant “called CLL”?
The fact that I found this forum with its resources and invaluable contributions from members meant that I was able to go in to appointments confident in my background knowledge - this greatly reduced my stress and anxiety levels. For this I am eternally grateful. Thank you.