I will be 65 years old in January 2014 and have had what I thought was extreme fatigue for a number of years. A year ago I was diagnosed with Type 2 Diabetes - just like my daddy and all four of my siblings, but my fatigue went back further. Thought it was just old age.
Almost every time I went to the doctor for the past few years, I told her I just felt so tired all the time, even though my A1c readings were low 6's. After trying to mow the grass in early June of this year, I told the doctor I could only walk a few feet with the mower and then it was like I could not suck in enough breath to breathe. I always ate before I did yardwork. I questioned diabetics I knew if they had trouble breathing with little exertion and they said they did not. My doctor even did an EKG to check my heart, which came back normal.
Then I had labs done in late June 2013 and my WBC was 19.8 - high just like it had been the last few years. I had meant to call the year before to see what was going on but then got busy and forgot about it, assuming that if anything needed to be done the doctor would let me know. This year when it came back at 19.8, I showed my labs to my renal Dietitian daughter and she asked me when I was going to call and find out what was going on. I looked at my list of providers to see my choices of hematologists and found the one that had treated my mother's mantle cell lymphoma the week before she died and decided I would go to him to see what was going on since my doctor did not seemed concerned.
Then I decided before I made an appointment with him, I would call my doctor to see why she was not concerned that my WBC was twice as high as it should be. Her answer to me was that my WBC "had always been high" - I was furious! She did say she was going to refer me to a hematologist and did I have a preference. I told her who I wanted to go see. Later that day her office called and I went in the next day to have a CBC - my lymphocytes were 73.9% (normal high was 55%) and my WBC was still about 20.
The next week when I saw the hematologist, labs were drawn before I saw him and my WBC was 30.2. He told me I probably had CLL but wanted to have a flow cytometry done to confirm. A week later he called to confirm his initial CLL diagnosis - stage 0..
I went back and looked at copies of prior labs. In 2004, my WBC was normal at 4.8 but my lymphocyte count was high - at 50.5 (normal at up to 40). I wonder if that was the start of my CLL. My fatigue went back that far. In 2008, my WBC was 7.9 and my lymphocyte reading was 55.5% (normal at up to 40).
No more CBCs until July of this year, but other WBCs of:
I'm now going in every three months so my hematologist can establish a baseline. I'm negative for CD38 - which is good, and I plan to ask him on my next visit about my Zap70 reading.