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Any one else with low blood counts?
I have low white cell counts 2.4 , low platelets 31.0 last check was 42.0,
and ANC at .5 my gran% is 19.1 and my lymph% is at 60.2 with Mono% at 20.3 . not quite sure what to make of it all. Dr. Says CCUS. this has been my life for over 30 years. numbers go up and down like a roller coaster. Beginning of this year I was blessed with all normal counts. then mid year i had an infection on my leg . The ER put me on Keflex and Bactrim. Not sure if the antibiotics had anything to do with a sharp drop in my numbers. Any idea?
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@j68eis We’re not medical professionals on the site so really can’t comment on your lab values. Did the doctor explain any of it? And what is CCUS?
You posted this question in the autoimmune support group. Do you have an autoimmune disease?
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1 ReactionClonal Cytopenias of undetermined signficance.
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1 ReactionI also have low platelets, WBC after being told for years my liver enzymes were high. Then a Gastro doctor said my bilirubin was high. Eventually I was told I had non alcoholic fatty liver then autoimmune PBC that had attacked my liver causing cirrhosis. I’ve read many times this is not found until we are older in our sixties. I have been asymptomatic!
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2 ReactionsWhat do your platelet counts run? just wondering?
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1 Reaction@j68eis I’m so sorry! I didn’t welcome you on my first posting. I’m so glad that you found MayoClinicConnect!
I found some information on CCUS: https://my.clevelandclinic.org/health/diseases/24864-cytopenia
You say you’ve had this your whole life, but it’s not been diagnosed? Were you frequently sick as a child? Autoimmune diseases and cancers can be a cause of this, but so might other things.
Have your doctors suggested treatment or a plan of care? Can you give them a call on Monday?
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2 ReactionsI’ve barley been sick as an adult. My Doctor at the Mayo Clinic sent me for a blood draw in the CHIP clinic, which has been sent to
Rochester Minnesota for next generation sequencing.
The only time I was in the hospital was for a massive pulmonary embolism back in 2017.
My last BMB showed a couple of low level mutations in the KM2TC and ASXL1 genes.
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1 ReactionHi @j68eis Receiving a diagnosis and not having anyone you know to compare experiences with can have you feeling pretty lonely. I was able to find another member in our forum who was also diagnosed with CCUS, Clonal Cytopenia of Undetermined Significance…quite a mouthful.
CCUS is a condition in which a person has a low blood count—a low level of certain kinds of blood cells—without an apparent cause, and a portion of the blood cells carry an acquired genetic mutation.
You had some genetic testing done which showed mutated genes.
This information can be valuable to your doctor so that if you need treatment at some point, they know the culprits responsible.
I’d like to introduce you to @pamrod02 who also has the diagnosis of CCUS as she mentioned in this comment earlier this year. Hopefully she can share her experiences with you.
https://connect.mayoclinic.org/comment/918653/
(From the discussion on Iron deficiency anemia without an apparent cause.)
Have you been referred to the hematology department at Mayo?
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3 ReactionsWhat do your platelet counts run? And white cell count?
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2 ReactionsOn my 9/18 labs :
Platelets 75
WBC 2.38
My BUN, Creatinine, and Alkaline Phosphates are high.
Since starting Ursodiol my AST, ALT are within range.
My numbers have been up and down for years.
Next generation sequencing hopefully will shed some light on what exactly is going on. So tired of being poked and prodded.
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