Raised LFT’s and bilirubin

[Liverprobs]

Name changed as very outing.

Dd is 19 and become very poorly. Blood tests show very raised LFT’s - which are thankfully now dropping after 2 weeks. However, her bilirubin is increasing and is now over 200. Everything has been ruled out and hospital thinks it’s a virus, possibly glandular fever but not confirmed yet. She has severe pain behind her bellybutton which sometimes spreads to her lower back, she feel nauseous and struggles to eat because of this. When she does eat her symptoms get worse and her tummy gets bloated. She’s obviously very yellow due to the high bilirubin levels. Nothing takes away her pain and we’re all now really struggling as a family.

Any ideas what could be going on and what we can do to help the pain? ... gallstones, gallbladder, hepatitis viruses, hiv, pancreatitis, Gilbert’s syndrome all been ruled out.

TIA.

This is a nightmare for you all. The itching sounds horrific.

Did she actually have a liver biopsy in the end?
Did it just show cholestasis?

Are they absolutely certain she doesn't have a tiny tumor/cancer in her pancreas/gall bladder or bile duct?

I keep coming back to check on this thread every few days. It beggars belief that they have not got to the root of this problem. Your poor daughter.

The itching is horrific fret ... it’s even inside her vagina and bottom

She eventually had the liver biopsy on the Tuesday. Tuesday night doctor came round and said it showed Cholestasis, and was caused by her contraceptive pill and she had to stop it. Wednesday morning different doctor came round and said Cholestasis WASN’t caused by her pill. Wednesday evening different doctor came round and said Cholestasis WAS caused by her pill! Piss up in a brewery comes to mind ...

They say they’re certain nothing else is going on at all.

claire .... they think they have got to the root though ... it’s just not getting better in the way they think ...

She’s got headaches now so gonna keep a careful eye on her today for any other symptoms ...

Do they have a timescale in which they are expecting to see improvement after stopping the pill?

So sorry to hear about your daughter’s health OP. I just wanted to say that years ago, when I went back on the pill after a 3 year break, I had a reaction - my symptoms were insane itching and apparently jaundice - tho I thought I was a bit tanned! Most doctors ignored the issue but one got me blood tests and they came back as very high bilirubin levels and LFT. I was at uni at the time, with no phone, and my doctor actually came to my house and said stop taking the pill immediately. I did - and my levels went back to normal after a few weeks (daily blood tests - as I was sitting my finals).
They said it was Hep E - but really that was just a catchall for my levels being off the scale. I haven’t tried to take the pill since - the risk is too great.

Truely hope her bilirubin levels reduce ASAP. Her life is on hold.

As she is so unwell hopefully she isn't having periods.
Is she is perhaps a IUS would be worth considering, or just tranexamic and mefanamic acid combo.

Does seem an extreme reaction to glandular fever.

Best wishes

claire .... no timescale but they expected them to stay the same or start reducing ... instead they’ve rocketed.

decision ... so glad you got better quickly ... I hope dd does now, she stopped taking pill 2 weeks ago but levels just so far getting worse.

fret ... her life is on hold in such a BIG way - she can’t work, sleeps an awful lot, is in constant pain. It’s very depressing. Been told today if her level reaches 600 than she’ll admitted again to hospital then any ‘crisis’ can be treated immediately .... makes it sound more serious now ....

I'm so sorry to hear things haven't improved but I noticed upthread someone mentioned sphincter of Oddi. It doesn't sound like a typical presentation but it's the only time my bilirubin levels were high, has she been having any painkillers at all? Opiates, even co codamol can trigger the pain you describe and affect these results, pain on eating and pain through to the back are typical though. SOD type 1 causes these kind of blood changes

I think they should admit her to the liver ward and would push for that. As an inpatient, scans, test, treatments are quicker to access and because they want you better so they can have the bed a more intensive effort is made. Also, it sounds like she's pretty poorly.

I've just read all this thread and just want to offer my good wishes for a speedy recovery for your dd. You have been an amazing mum to her and so on the case. I hope things resolve quickly.

How are things today @liverprobs

miss ... I’ve phoned our liver doctor today to ask about sphincter - secretary has spoken to doctor and been told dd has had an mrcp and nothing showed up on there. I said she’s had mri, wasn’t called Marco so not sure if they’re different .. she’s gonna check again with doctor and get back to me. No painkillers at all, only had oramorph a few times but liver doctor prescribed that. I’m gonna check through mine and dd’s txt history to see if her levels rise when she’s had oramorph ... I don’t think so though as they’ve steadily risen but she’s hardly had oramorph. Symptoms and pain certainly fit though.

don ... she’s been admitted twice to the liver ward. They’ve done all tests they can including liver biopsy, and everything comes back normal. Only shows glandular fever 2 months ago and Cholestasis now, caused they think by contraceptive pill. They admitted her each time so that they could get the tests done quicker. She definitely is a very poorly girl.

merry ... ah thank you, I don’t see myself as amazing - I focus on what I didn’t say and didn’t push hard enough for. I’ll try to concentrate on my positives, thank you

claire ... still the same, waiting for blood results to see if steroids are helping them to drop.

The test is an ERCP

www.guysandstthomas.nhs.uk/resources/patient-information/gi/having-an-ercp.pdf

I am sorry to hear she is so unwell.
Would a hepatobiliary review be worth asking for?
And a CT TAP.
Plus CEA bloods.
Might just set your mind at ease nothing else is going on.
Hope shes better soon.

fret .... an ercp has never been mentioned or offered. She’s had 2 ultrasounds, an mri and biopsy.

just ... the liver biopsy shows things conclusively so I guess no need for redoing other tests .... however, they’ve said if her bilirubin goes to 600 then she will have tests redone

I'm so sorry your daughter is going through this, I had choleostasis last year (caused by trying Kratom, so totally my fault) and it was hell. I didn't realise simple itchiness could make life so miserable until I went through it.

If you/your daughter haven't already found the British Liver Trust forum I'd recommend it, they're really lovely people on there with lots of experience, and I believe the helpline provides good support too though I never tried it.

An MRCP examines the same part of the body as an ERCP but with lower risk because it's less invasive.

So sorry to hear how poorly your DD is.
Only thing I can think of is a hida scan to see the gallbladder function. This is different to the ultrasound and mri.

country ... I’ll have a look at the forum, thank you.
worried ... I didn’t know that. She’s had an mri but on the papers it says mrcp so not sure if they’re the same?
elle ... I’m not sure they will do any more scans as they say they know what the problem is.

So dd has started on steroids ... can they make you even more itchy? After 4 days of them she has become super insanely itchy, to the point of literally scratching ALL the time, becoming very low and crying because of it. Dd absolutely never ever shows any emotion and never ever lets you know how she feels. It is so distressing to watch, I don’t know how much more I can take. I can only imagine what it’s like for her to be actually feeling it

The pain in her tummy has also increased dramatically.

Latest bloods show levels are starting to drop. Bilirubin is now 474 .... so why is her itching and pain worse?

Liverprobs do you think she would consider doing some self hypnosis? It can be very powerful and she could imagine her body floating in cool healing water or anything she can think of that's soothing. It might help the itch for a while. The mind is really powerful and hypnosis is used successfully at times for things like pain relief. Glad her bloods are slightly better. Maybe it takes longer for the body to benefit.

That sounds good merry ... but I can fully picture dd’s rolly eyes face when I suggest it

Very quick update .., brought her to a+e as she’s had a horrendous day with pain and itching again. Bilirubin is 572!!

The itching just isn’t letting up at all ... she’s constantly scratching. She wakes up from sleep with new scabs on her from scratching in her sleep

She’s crying from it all getting too much for her to bear ... dd does not ever cry. It’s heartbreaking.

Your poor DD. She must be so miserable and it must be horrible to see. I really hope they manage to get to the bottom of things soon and that she can get some effective treatment.

I also agree with a PP that whilst it can't treat the cause, hypnosis can be very effective to treat symptoms such as itching. It might be worth a try to give her some relief and to help her feel like she is regaining control a little.

How is dd today op? I hope she's feeling a little better

I’m curious about hypnotherapy ... I can’t imagine dd taking to it .. BUT .. because the itch is insane constantly, how would hypnotherapy even work? She’d be having to practice it every waking moment?

merry .. she doesn’t like being in hospital at all so that’s hard for her. They want her to stay in again tonight and I’m just hoping she doesn’t talk about it during visiting, and just gets on with the fact that she has to stay in. I see her point in a way though .. they don’t actually do anything for her. Although they are doing another mri today so that’s good news.

The pain and itching are just the same but don’t feel as intense because she’s just lying in bed all day not moving much.

To be honest, and I can’t believe I’m saying this, it’s a relief for me that’s she’s in hospital because I don’t have to bear the agony of seeing her the way she is, I feel a bit of respite.
Then I feel guilty for feeling that way