Just had a call; a month on, my bilirubin retest still shows it’s ‘still slightly raised’ (it was 30 last time) but I’m yet to found out the new number (talking with the doc Friday).
They have sent off for an ultrasound (precaution?) so no idea how long that will take. Last time out my kidney function and other liver tests were fine; plus over the last month the pain has subsided a lot (to very rare now) so I really don’t know what to make of it.
I am very concerned that it’s something quite serious as I’m a fit 45 year old who walks, cycles and does weights every week. I’m 6ft, just over 12 stone so we’ll in shape.
Any sensible thoughts please? Thanks in advance.
JT
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Harrison1
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Gilberts is typically 'diagnosed' by elevated bilirubin with no known cause. It would be expected to rule out other possible causes before declaring Gilberts. Sometimes a test for conjugated v non-conjugated bilirubin will help confirm the diagnosis after everything else is ruled out. I presume the ultrasound is part of the investigation for other causes of elevated bilirubin.I hope you get some good news soon
Like you, I live in the gym, maintain a good weight, eat a very good diet and used to drink within government guidelines (I'm teetotal now)...I'm a few years older than you though. I've been diagnosed with a pretty rare condition, but my consultant can't explain the high bilirubin so has added Gilberts to my diagnosis. Easy to say 'try not to worry' but you can at least take solace in the fact you are doing everything you can to improve the situation. It sounds like you have had a pretty good set of test results (bilirubin aside) so far, so there is a lot to be positive about.
I believe that stress (along with exhaustion, illness, tiredness etc) has been known to exasperate symptoms of those with Gilbert syndrome.
I'm always reluctant to compare numbers as so many things can affect them and it's very easy to get fixated on figures. However, over the past couple of years most of my LFT tests have more or less trended in the right direction. Bilirubin is the exception - I've has 12 tests in 30 months ranging from a high of 43 and a low of 21, but it's up and down almost randomly ... perhaps I should check for a correlation between bilirubin and heavy squat sessions! I've stopped worrying about it. The other thing to keep in mind is that these numbers are not massively 'out of range'. There's a bell curve and although higher than 'normal' there's no magic thing about the number 23, some people with have higher or lower levels and as long as other causes are ruled out by your doctor, and the number doesn't get silly then that's ok. Hopefully you get some answers after the ultrasound, but no news might well be good news - Gilberts if fairly common.
I went for bloods for something else, I had liver enzymes alt 42 and ggt 216 they’re sending me for scan as I had obstetric choleststis with my daughter so she said usually they’d just retest but they’ll send me for scan first then retest bloods
My doctor told me they test it if one of the other liver enzymes are high but it needs to be requested. So the doctor said to me he wasn’t sure why the lab tested it but probably cos my other liver enzyme was high as he didn’t ask them to test it.
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Worried and looking for info
ultrasound 
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ultrasound 
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