Bilirubin at up and down between 24 & 31

[Elektrik80]

Hi everyone

I have ben have a few problems with my stools recently and as part of the tests I have been having bloods done.

My bilirubin is hovering between 24 & 31 which I know is higher than it should be. All other LFL tests are normal.

I have had MRI, MRCP & CT Scan and whenever I have asked the consultant has said my liver is okay and all the ducts are clear and as they should be. No mention of fatty liver disease or cirrohsis. i don't drink and am a vegetarian.

I presume any of those imaging tests will have shown fatty liver or NASH

I do have a gallstone and the associated on off pain as well, which they are keeping an eye on and the doctor has requested a test for diabetes & Gilberts to see if that is the culprit.

So i'm kinda lost tbh as to what can be keeping my bilirubin so high. I feel like my skin is more yellow and i do feel fatigued. Any help or things to request or look into would be helpful.

thanks everyone, i hope you are all well.

mx

[Elektrik80]

Hi Robbie

I haven't had a liver biopsy no - what is PBC and does this mean I am going to die?

[Elektrik80]

I have just looked at it on the internet and it sounds a lot like the issues I have. Joint ache, pale stools, dry mouth. I am so scared. All the imaging tests came back okay with all the billiary ducts. Is it only diagnosed by a liver biopsy?

[Hidden in reply to Elektrik80]

Hi and welcome,

Please remember that only your own doctors can diagnose you. Try not to google other conditions as it will only stress you out.

Maybe consider discussing other testing for different conditions when you see your doctor next, they will be best placed to clinically advise you.

If you are in the UK you could call our nurse led helpline for a chat, it’s open on Monday from 10am.

Take care

Best wishes

Trust1

[Robbie21]

My husband had a lot of similar symptoms and was diagnosed with PBC in 2005. They struggled to find a diagnosis originally it was finally confirmed as PBC with a liver biopsy. They also thought he had Gilbert's disease, but it was never definately confirmed.

I understand your anxieties, but PBC can be held in bay by medication, as can many liver diseases. It is just differcult to pinpoint a diagnosis especially many of the autoimmune diseases.

There are many potential causes of your symptoms.

Try not to stress about it. If your under a decent gastro/liver team they will hopefully find the cause of your symptoms.

[Elektrik80 in reply to Robbie21]

Thanks for replying Robbie. I appreciate that alot.

I am currently under HPB consultant at the moment but thought I would ask to be deferred to Gastro this week.

I’m so scared. Its just come on so suddenly, 5 months ago i was fighting fit, running, cycling, did a 9mile race, pale stools the next day and its been going downhill ever since.

I’m only 44, have 2 young kids, just want to be fit & healthy for them. I guess if it is PBC its not something I could have controlled as it’s an autoimmune disease.

The symptoms seem so obvious to me. Pretty sure this is what I have now. So gutted.

[Robbie21 in reply to Elektrik80]

My husband was under joint care of gastro and liver team. It worked well.

Getting the diagnosis was the most stressful bit.

I understand when you say you feel gutted. We were shell shocked, but then when you get your head around what ever the diagnosis is. It just becomes a name that you park in the back of your mind and have to find a way of moving on with your life. Don't let your fear take over . Be guided by the clinicians.

Please let me know how you get on.