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.

[MerryInthechelseahotel]

Don't feel guilty! I would be the same and have been the same at various times over the years! You know she is well looked after and in the best place.

I found this on the web as an example of what the hypnosis would be like. If she wanted to try it you might be able to get someone to come in to do it with her.

[Fretfulparent]

It's unfortunate that it's a BH weekend but hope she is admitted under a liver/gastro team. Probably depends on whether it's teaching hospital or a district one.
I attempted a search about how long it takes for contraceptive drug induced cholestasis to resolve but could not find a dependable answer. Did your DD's consultant give you any time scale?
Sending best wishes.

[Liverprobs]

merry ... she’s in the best place but she’s quite complex so is finding it very difficult to cope. It’s the best place for her physical health, but worst for her mental health

The hypno therapy seems worth a try .. but dd absolutely is not the right nature - she has no perseverance or patience at all.

fret ... she was admitted to our areas emergency hospital but has now been transferred to our liver specialists at a different hospital. This is where we are seen usually, they’re doing another MRCP but we’ve not been told when.

No timescale given .., liver doctor says it should be better by now, dd’s liver is not behaving in the expected way. So they’re now trying medications that wouldn’t normally be used for this condition so it’s teally just guess work ..,

[celebrityskin]

My first thought on reading this was has she had an MRCP to investigate the cholestasis, so great one has been scheduled.
The lack of response from steroids also goes against an autoimmune cause.
Defo sensible to stop her pill. Perhaps she can have a Kyleena or Jaydess instead- these are smaller versions of the Mirena coil which are good for heavy periods/contraception.
Thinking of you and your daughter xxx

[Liverprobs]

Thanks celeb ... she absolutely won’t have a coil at all ... she’s now been lightly bleeding for 2 weeks :-(

They’ve said it’s not autoimmune from liver biopsy. They’re trying steroids as they just don’t know what else to do. She’s been on them for 9 days now and they’ve done nothing .. doctor expected a reaction within 7 days if they were working.

I’m not really sure what an mrcp will show as my understanding was that biopsy was conclusive of anything going on.

[OhTheRoses]

Oh the poor girl. You have been very patient op. I have to say at least a month ago I'd have queried the contradictory advice, the messing about over the biopsy and lack of improvement of symptoms. I think you have now to be very insistent. You expect a diagnosis. You expect some effective pain and itch relief. You expect services to join up. And yes I'd also want to know if her doctors are the UK leading experts and if not ask that they are involved. I'd go as far as noting that unless things start moving, you will hold them responsible for any harm your dd may suffer as a result of delays and failude to diagnose and effectively treat. Sounds bloody awful

[Liverprobs]

roses ... I think I’ve been more than patient and probably nowhere near as assertive enough! But they’re giving me what seems to be plausible explanations each time.

However dd can’t continue like this. It’s difficult because she’s on all medication she can be for the itching so I do t know what else they can do ... same for the pain - nothing works and she’s tried everything they can give her ...

I’ll ask today about whether they talk to other specialists wider than our ‘catchment’ but I have a feeling they’ll say they know what’s wrong with dd and it’s just a waiting game.

I told the doctor yesterday that dd can’t continue and we need something done. She was at a loss but said the doctors today would decide what to do. The doctor doing the rounds today is the doctor we see in clinic - in one way that’s good as she knows dd very well but in another way I wonder if she then doesn’t think further because of that.

[Fretfulparent]

Hope you get a good plan made today if she is seeing the actual consultant she is under.
Regarding the biopsy - has there been an actual histology report? have you seen it?

Agree with a PP about asking about an opinion from a specialist (tertiary) liver team EG Kings College hospital in SE London, ( there will be similar where you are in the country)

Also she may be bleeding if her coagulation system is abnormal which can be affected if her liver is not working properly.

[Liverprobs]

Morning fret ... dd’s consultant is part of the tertiary team in our area (north east).

I haven’t seen the biopsy report .. it didn’t even occur to me to ask for it.

Her coagulation is fine, that’s checked twice a week as part of her blood tests along with many other things.

Doctor has today said they will do a ct scan tomorrow to look at liver, bile ducts, pancreas, stomach .., but biopsy was all clear, bloods are all clear, it is just cholestasis that is going to take time to settle. They’re trying a different painkiller, getting the dietician to see her. Bilirubin has come down .., now 405.

[Liverprobs]

So today’s bloods show coagulation is abnormal, first time ever ... having iv vitamin k for 3 days.
CT scan was completely normal.

[glitterbiscuits]

Is she feeling any better? Hopefully things will begin to turn the corner for full recovery.

[Liverprobs]

So abnormal coagulation means her liver is starting to struggle ... she’s having vitamin k for 3 days. They expect her to get better.

Liver is normal size, no scarring, no abnormalities, nothing.

Worse case scenario (and they told us because they know dd need to be prepared so she can process things over time), nowhere near on the cards yet, but, if her liver doesn’t respond to the vitamin k then the only option is a liver transplant!

We’re not thinking about that though ... we’re concentrating on the most likely outcome, which is her recovery from this.

[Fretfulparent]

What terrifying news. Sending positive vibes that the liver responds to vitamin K.

To clarify - they are saying that the ongoing cholestasis is possibly going to cause liver failure?

[OhTheRoses]

Sorry OP but I think you need to beg, borrow, sell the silver or house and get her referred to the UK's leading specialist for her condition.

[Liverprobs]

fret ... not in so many words. They said the abnormal coagulation means the liver can’t absorb/process vitamin k. This means the liver is struggling with the cholestasis. If coagulation continues to be a problem then a transplant is the only option as it means the liver is failing.

roses ... we were never ever told things could be critical. We were always led to believe that although dd’s liver isn’t happy, it’s essentially healthy as nothing is physically wrong with it. The bilirubin in the cells of the liver was always eventually going to drop naturally with the medication.

I’m not sure a different liver team would say/do different. However, now given the gravity of the situation I will look in to going elsewhere. Who would I contact? How do I find out who the best is?

UPDATE - yesterday’s bloods show vitamin k has improved the coagulation. I don’t know anything further yet, waiting for doctors to come round.

I’m going to ask if vitamin k can occur as a problem again. Why exactly it’s happened. Why everything is normal yet now we could potentially be heading to transplant. What else should I be asking?

[glitterbiscuits]

I think I'd try to speak to the British Liver Trust. They may have people in the same situation as your poor DD.

Fingers crossed for good news soon

[Claireshh]

I’d be asking for a referral/transfer to Kings.

www.kch.nhs.uk/service/a-z/paediatric-liver

I would contact Dr Alastair Baker’s secretary. I would email explaining the situation and ask if it is possible for a private consultation. Alternatively ask her current medical team if they would consider a transfer/referral to Kings. Just had a thought Is your daughter under paediatric care? If not i’ll see what else I can find.
www.kch.nhs.uk/service/a-z/paediatric-liver

[Claireshh]

Ah I just checked your initial post and can see your daughter is 19 so under adult care. I’ll see what else I can find.

[Liverprobs]

Thank you everyone.

I’m now really worried but try to remain calm. Bilirubin dropped 2 days ago to 380, yesterday rose to 420.

The coagulation problem is caused by the bilirubin going too high. I’m so worried now that she’s not going to get better.

They’ve stopped the steroids as they’re not making a difference.

Is it even possible to get dd transferred elsewhere? From what the liver team say here, they know exactly what’s going on and why. But nothing can be done it’s just wait and watch. I’m so confused. Waiting for liver doctor to ring me, then going to ring British Liver Foundation then my GP. But I don’t think they’ll move her.

[MerryInthechelseahotel]

So sorry to hear this op. I can imagine how worried you must be. I think speaking to someone from the liver foundation would definitely be the thing to do. Let us know how you get on x

[Fretfulparent]

I am so sorry to read your updates.

It seems that the longer it goes on the more serious it is becoming.
It does sound like you are under a good liver team but their original optimism that it would spontaneously resolve is not the reality now.

Is there any consensus as to whether the cholestasis is a result of the hepatitis from glandular fever or drug induced (contraceptive) or both??

[Liverprobs]

They say drug induced from her pill ... but she stopped that 5 August ...

They say it could stem from liver being low in the beginning due to glandular fever ..

[WillaDaPeephole]

OP this sounds horrible for you and your poor daughter. Has she had genetics done for Dubin-Johnson syndrome? From memory it can be unmasked by contraceptive pill usage.

[DonPablo]

Are they discussing her at MDTs?

I was in a similar situation once with my mum. I found a different specialist and emailed him directly. He responded immediately and took over her care. No fees, all on the NHS.

Your current team will understand you trying to get the very best care for your dd.

[Liverprobs]

willa ... I assume it’s not this as it says the liver goes black .. I’m guessing dd’s liver is not black as it’s never been mentioned and I assume would be seen on biopsy?

Don ... they’re discussing dd at weekly meetings so I guess that means yes?

She’s allowed home for the weekend but must return Sunday night.