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Bilirubin
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Was having a bit of a muse over some results via hospital and self testing so though I'd see if Sqad/Slaney had any ideas.
Was told my blood bilirubin was slightly raised earlier, 24 I think, though I do have Gilbert's syndrome (think that's raised bilirubin?).
In self testing urine sticks, I've noticed there is some bilirubin but only the one up from normal on the key you look at (and bearing in mind self testing, not proper one at GP/hospital). Had them when having a run of UTIs. Usually always some protein too, GFR bobbing around 60-65 recently.
My ALT is still up over 100 despite a half dose of my toci a month ago and had an ultrasound of my abdomen and an internal one not long back to check if I had anything like an ovarian cyst due to bloating, very bad indigestion, gas and pain. Came back all clear save a bit of fatty liver.
I was asking at hospital to check my GFR earlier as my wee seems to have gone a lot darker recently (not just first thing) and I wondered if I was a bit dehydrated or something like that but with the bilirubin thing, could this be something liver related, possible due to the drugs?
It can't be my gallbladder this time as I don't have one any more :)
Was told my blood bilirubin was slightly raised earlier, 24 I think, though I do have Gilbert's syndrome (think that's raised bilirubin?).
In self testing urine sticks, I've noticed there is some bilirubin but only the one up from normal on the key you look at (and bearing in mind self testing, not proper one at GP/hospital). Had them when having a run of UTIs. Usually always some protein too, GFR bobbing around 60-65 recently.
My ALT is still up over 100 despite a half dose of my toci a month ago and had an ultrasound of my abdomen and an internal one not long back to check if I had anything like an ovarian cyst due to bloating, very bad indigestion, gas and pain. Came back all clear save a bit of fatty liver.
I was asking at hospital to check my GFR earlier as my wee seems to have gone a lot darker recently (not just first thing) and I wondered if I was a bit dehydrated or something like that but with the bilirubin thing, could this be something liver related, possible due to the drugs?
It can't be my gallbladder this time as I don't have one any more :)
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Hi Eve - Gilbert's as well - that's complicated.
As Fusion5 says that bilirubin level is not all that high but it could fluctuate, and if higher could make the urine yellower.
Interestingly tocilizumab can be associated with a Gilbert's type syndrome.
As regards your other tests, they are stable and not getting any worse - as long as you can tolerate even half dose that's good.
Remind me, do you have any malabsorption? I'm trying to fit in the liver enzyme abnormalities and the fatty changes on ultrasound.
As Fusion5 says that bilirubin level is not all that high but it could fluctuate, and if higher could make the urine yellower.
Interestingly tocilizumab can be associated with a Gilbert's type syndrome.
As regards your other tests, they are stable and not getting any worse - as long as you can tolerate even half dose that's good.
Remind me, do you have any malabsorption? I'm trying to fit in the liver enzyme abnormalities and the fatty changes on ultrasound.
Sorry, had to get in out rain :) Gilberts was mentioned randomly by a GP years ago too, sure I had baby jaundice so thought maybe connected to that.
I'm having more undigested food coming through and pain and some bright red blood again, wondering if banding I had done earlier this year didn't sort everything or new things cropped up.
I'm having more undigested food coming through and pain and some bright red blood again, wondering if banding I had done earlier this year didn't sort everything or new things cropped up.
I see- so you are on something like Questran as well. I'ts tempting to think that all the GI symptoms and slightly abnormal liver function tests are connected in some way.
However the main thing to concentrate on is that the tests are not significantly worse and you are still managing to get some treatment.
However the main thing to concentrate on is that the tests are not significantly worse and you are still managing to get some treatment.
Yes, not getting worse is definitely good :)
I was on Questran originally but not take tablets as so much less of a faff than carting the sachets around and sticking them in drinks and such.
On 6 a day at the moment but it's up and down, just how it is according to gastro but definitely does help a lot compared to before.
Might have been my last infusion, half dose isn't doing much which is such a shame as I really was seeing an improvement on the full doses. Better than nothing though definitely! They are trying to get injections so a smaller weekly dose to see if that helps, otherwise going to review after next bloods instead of infusion when next due. So will see what bloods say then, ALT had gone up slightly from last time but not by much so hoping it drops, at least a little bit. Fingers crossed!
Saw physio who said I am likely dehydrated as I'm going into spasms/cramps way to easily, he suggested tonic water (yuck but it if helps I'll try it!). Have been drinking lots of Lucozade Sport to try to get better hydrated but cutting down due to all the sugar.
I was on Questran originally but not take tablets as so much less of a faff than carting the sachets around and sticking them in drinks and such.
On 6 a day at the moment but it's up and down, just how it is according to gastro but definitely does help a lot compared to before.
Might have been my last infusion, half dose isn't doing much which is such a shame as I really was seeing an improvement on the full doses. Better than nothing though definitely! They are trying to get injections so a smaller weekly dose to see if that helps, otherwise going to review after next bloods instead of infusion when next due. So will see what bloods say then, ALT had gone up slightly from last time but not by much so hoping it drops, at least a little bit. Fingers crossed!
Saw physio who said I am likely dehydrated as I'm going into spasms/cramps way to easily, he suggested tonic water (yuck but it if helps I'll try it!). Have been drinking lots of Lucozade Sport to try to get better hydrated but cutting down due to all the sugar.
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