How many here have Gilbert's Syndrome? - CLL Support

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How many here have Gilbert's Syndrome?

JustAGuy profile image
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How many CLLers here have Gilbert's Syndrome? Does Gilbert's Syndrome have any bearing on treatment options? Some sources say that Gilbert's Syndrome is benign, however, others mention that the impaired liver function which causes Gilbert's should be considered when deciding on treatments for CLL.

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JustAGuy profile image
JustAGuy
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Kwenda profile image
Kwenda

Count me in on this reluctantly..

My only knowledge is that Gilberts can reduce platelet levels, which of course is never good for us with CLL.

On the good side, Gilberts has a protective effect on heart health.

Other slight troubling effects would be IBS in varying forms.

Yes you often read that Gilbert's Syndrome is benign, but I think this depends upon the level of bilirubin in the blood. Also I have not seen any research into the differences between the un-conjugated and conjugated quantities having different effects.

I have learnt to keep my bilirubin level within reasonable bounds by diet controls.

Dick

2003UK profile image
2003UK

Hi JustAGuy, I have had CLL since 2003 and I am a very lucky girl because I am always been on Watch and Wait. About 10 years ago I was diagnosed with Gilberts Syndrome through my regular blood tests. I was told not to worry about it as it is benign and if enough tests are carried out in a patient usually you will find something slightly out of the normal range. So I am not answering your question but giving you my experiences. Take care and you have another question to ask your specialist.

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