Bloodwork question -Bilirubin Total is 33 umol... - CLL Support

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Bloodwork question -Bilirubin Total is 33 umol/L should b 20, Glomerular Filtration 59

Curling123 profile image
4 Replies

Just had bloodwork done and all was well except Bilirubin was on the high side. On Acalabrutinib for two years and doing well. My question is this: does this mean kidney disease? Bilirubin has been mostly around 20 in previous bloodwork, twice has risen to 26, once before, but never over 30. My doc wants to check it again in the next three months. My concern of course is how our kidneys are functioning over time taking a potent cancer drug. For those of us on treatment, is it normal to see Bilirubin fluctuate sometimes? Can dehydration or anemia make a difference too? Thank you.

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Curling123
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prbs2707 profile image
prbs2707

Hi I am very similar with a consistently high bilirubin level. Some years ago (long before CLL) I was diagnosed with Gilberts syndrome which is what you may have. My sister and brother both have it. The good news is that it has never caused me any problems. I think the NHS estimate that 1 in 3 with Gilberts never experience any symptoms. I think your level of around 30 is exactly like mine and it does fluctuate around that level although interestingly on my last blood test in January it was down at 17. My consultant is not the least bit concerned as most people live a normal life with Gilberts never knowing they have itOf course your higher level might be from another cause which needs checking but mention Gilberts to your doctors to see if they think it's simply that. Hopefully it is as it's never caused me any problems. Best wishes. Patrick

PTAer profile image
PTAer

Hi. As per Patrick's comment, my bilirubin sits slightly high. My dad found out he had Gilbert's syndrome a few years previously so I was checked and have it too. Neither of us would have known if it wasn't for unrelated blood tests. I do believe that dehydration can result in higher levels.

Bobby9toes profile image
Bobby9toes

My bilirubin has always been high even before my SLL diagnosis. My doctors have told me not to worry that I have Gilbert’s Syndrome and it is not a concern.

Curling123 profile image
Curling123

Thank you for your replies. Mine fluctuates too. Will ask to be tested for Gilbert’s. Last November it was 16, now 33, so it was a jump.

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