Bile in urine

[spoul]

I've noticed my urine darken with a fluorescent yellow tinge over the last week. I'm pretty sure it's bile as I'm a retired midwife and due for routine blood tests and consultant appt shortly.

Just wondering if anyone else has this please? 🤔

[Hidden]

Hello spoul.

Apparently urine can darken in PBC whereas stools can go lighter 'pasty' looking. Could be that maybe. The urso can make stools pasty/lighter.

When I started on urso December 2010 my stools started to become lighter than normal. It is said with normal stools the colouring comes from bile so I suppose it can figure with PBC. I have changed my urso times of taking in the last couple months. I had got into routine of taking half dose breakfast and the other after evening meal. Was somehow feeling it wasn't right and I started encountering heartburn. Since having half dose breakfast and then quarter mid-afternoon followed by the final quarter (I take 4 tablets daily to make up 600mgs) around 8p.m., I feel much better and I've noticed my paler stools are now back to the normal colouring they used to be pre-urso. (I know this isn't the subject matter you asked about but this posting might just lead to stools too.)

I don't know what bile in urine means. Might be wrong but I thought bile in urine in pregnancy was due to that then. Actually just thought, you don't mean bilirubin in urine do you? Know you can have this but don't know what that can mean.

[spoul in reply to Hidden]

Hi there I'm not concerned re stools as I understand the relevance of that. Just concerned about urine as I seem to be feeling really ill this last week. Will pop to GP for reassurance.

Hope it's not the Ubiquinol I'm trying for fatigue 😔

[Hidden in reply to spoul]

Sorry to read you are not feeling as well at the moment.

I know after I started taking the urso I seemed to need to pop to the loo more during the night when I woke up with the itching but it could be just habit.

I know urine changes colour throughout the day said to be due to hydration and dehydration which I expect you know about. You didn't say if it was every time.

Just Googled the Ubiquinol and found it's that coenzyme-Q10 that some on this site have recently mentioned? I have found some info from the Mayo Clinic and they state it 'may' cause this and that, urinary infection is one so it just might....

I don't know anything about this coenzyme-Q10 if that is what the Ubiquinol is (apologies if it isn't) so I can't respond. The link is here though....and as usual as we know any worries should be passed to a doctor.

mayoclinic.org/drugs-supple...

[spoul in reply to Hidden]

Omg thanks for that probably wouldn't have taken it if I'd read that first. My lfts and thyroid bloods are likely to be all over the place now but I get so desperate with the fatigue xx

[Hidden in reply to Hidden]

Thanks for that link, Angela.

Now I understand why I felt so ill after trying the Coenzyme-Q10 (also for the fatigue, spoul). My Hep. specialist was fine with me taking it, but he did say that if I began to feel unwell to stop it immediately.

[spoul in reply to Hidden]

The one I'm taking is stronger than Ubiquinol called mitoQ from New Zealand. I will stop taking now I'm guessing my liver can't metabolise it........thanks for reply

[Hidden in reply to spoul]

I don't know what stage you are at, but I'm Stage 4, so wasn't too surprised that I couldn't tolerate the Coenzyme-Q10. The fatigue is 'such a b###h' isn't it?

[spoul in reply to Hidden]

No idea what stage I'm at but I have extensive cirrhosis and about to enter my 18th year 😊

[Hidden in reply to spoul]

This link might give you some idea as to what stage you are - that is if you want to know. I know once I had reached cirrhosis stage my treatment regime changed so it could be beneficial for you to know, especially if your doctor hasn't changed your treatment. Oh, by the way, I was diagnosed 28 years ago.

Ooops, forgot the link:

pbcers.org/about-pbc/stages...

[spoul in reply to Hidden]

Thanks for info I might be wrong but I don't think they stage you in the uk.

However I have been told by gastroenterologist that mine is slow progression and that transplant available to age 70!

[Hidden in reply to spoul]

You are probably right about the non-staging in the UK - I'm pretty sure they don't stage here in Australia either.

Ah, so the cut-off for transplants is 70 in the UK, it's the same here - I turned 70 last July so I am now ineligible.

[spoul in reply to Hidden]

I'm assuming you can only be staged following a liver biopsy that my consultant doesn't do.....as different stages can be found in different parts of liver.

Although I have extensive cirrhosis my liver is not compromised yet 😔

[Hidden in reply to spoul]

Yes, I think 'staging' is usually done by biopsy, but, as you say, there can be over-laps of stages throughout the liver. I had a biopsy when I was first diagnosed, and then again, 5 years later. Since I moved into cirrhosis stage, I have an ultrasound every 6 months.

I had a fibroscan done last year which gave a result of 30 - that result, plus my Portal Hypertension, galvanised my Hep. specialist into ordering an endoscopy which showed I had Grade 1 varicies and gastritis of the stomach.

My liver is not compromised yet either

[Calogia in reply to Hidden]

DianneS

I also am at stage 4...not many on here. The fatigue is a nightmare. I am a paralegal and wondering how much longer I can continue to keep this pace up.

Calogia

[Hidden in reply to Calogia]

It's a killer isn't it? I was mid-way through my PhD., lecturing at University, and a part-time IT support person when I had to finally call it quits, 6 years ago - now I pretty much sit around most of the time. If I could keep my mind focused I might do a bit of 'craft' stuff, but my mind likes to wander.........

[spoul in reply to Calogia]

i was a midwife in the uk and had to retire 6 years ago

[Hidden]

I sometimes have a darker colour urine that is brighter yellow not sure why, I did think it was bilirubin but my Gp was not worried and said drink more fluids. But bear in mind he does openly admit he knows very little about PBC, so if you find out it would be interesting.

[Flowergirl69]

My urine has been fluo yellow for as long I can remember. I was diagnosed PBC 7 years ago, but I had this strange color already about 20 years ago. I remember because my doctor paid some attention to it by that time, but he never told me I have PBC.

He only said that I had some damage at my liver and asked me if I drank a lot, which wasn't so. I had to be carefull with fat and prevent from drinking alcohol and that was that!

Only 7 years ago I was finally diagnosed after a lot of tests, constant feeling tired, problems with stool, problems with swallowing food, pain in my back and joints...

It was quite a shock to hear that by that time (after liver biopt) there was already a lot of damage and that I would need a liver transplant within 5-6 years, I was only 40 at that moment. Fortunately Urso does it's work and I'm quite stabil now. But for how long?

[cazer]

Hi spoul...as far as i know its the bilirubin....it stops coming out in stools and comes out in urine.

I have this and mentioned to consult he said all.part of liver not working as well.

My fatigue is pretty bad shouldnt moan but it is all consuming isnt.

I have to pshyc myself up to get dressed ir showered and put it off as long as possible.is it pbc you have?best wishes cazer.

[spoul in reply to cazer]

Hi cazer yes I have Pbc. I've contacted the company I buy the Ubiquinol from to see if it's a side effect they said no. Guess I'm worried my blood bilirubin level is raised but I'm due for blood tests shortly.

I'm like you my fatigue is dreadful....had to take ill health retirement but still I struggle on a daily basis 😔

[cazer in reply to spoul]

I was working as a dispensing optician then was pregnant with my 4th child had glandular fever whilst pregnant then never was well enough to go back to work..i was 36 at the time so it was quite a blow.also having 3 children and a prem baby with pbc was not a good combination we had to have homehelps and childminders as i just wasnt able to physically cope.that was 17years ago.im now classed as a non responder and borderline asessment for transplant but that could be a long wait!!!!!

Best wishes cazee

[spoul in reply to cazer]

I'm same about to enter my 18th year

[cazer in reply to spoul]

Being nosey how old are you now?

[spoul in reply to cazer]

57 was diagnosed at age 39

[cazer in reply to spoul]

Oh sorry read rest of thread and realise i missed some info. Do you take anything for the itch...think im going to have to get something for it...its got much worse in the last few weeks.cazer.

[spoul in reply to cazer]

Can honestly say I've not itched since the first time I took urso all them years ago but fatigue is my main symptom

[cazer in reply to spoul]

Im 53 diag 36 so not that disimilar.

My albumin is dropping so not sure if that is adding to itch.cazer.

[ginam]

Bile will give urine an amber color and cause it to have a soapy appearance where bubbles will form on top. A urine dipstick will show if bile is present.

[spoul in reply to ginam]

Yes thank you I'm taking a sample to the practice nurse next week as I don't see my consultant for 4 weeks 😊

[spoul]

Thanks everyone for your reassuring words, I'm such a worrier. The good news is that my serum bilirubin is normal and to my amazement all my previously elevated lfts from last 18 yrs are now normal.......I can't believe it.....maybe the coenzyme Q10 did work! Interesting theory watch this space 😊