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.

Did they say anything re the blood tests?

I'm not sure what a liver biopsy involves - is it keyhole surgery? Does she know about that? Bring charger, ipad/phone, maybe see if some of her friends might pop in for a visit.

Hopefully her boyfriend will visit anyway. Try to split up the visits so that she has someone at all visiting times rather than all of you together at once and no-one sometimes.

Thanks thump
She’s much better about the whole thing now .... I think her initial reaction was shock, out of the blue situation.
We took her in last night, she’s settled, talked to the doctor herself as he didn’t come til 9.45 pm! She chatted about the biopsy with him, so she understands how it will be carried out.
Her hepatologist said on the phone that because she’s in so much tummy pain (that doesn’t sound liver related) and her bowel habits are changing, then they’ll get her in to monitor her and see what’s happening. They’ll do a liver biopsy as her bilirubin has not dropped and they would have expected improvement after 3 weeks of her last hospital stay, so the biopsy is to make sure nothing else is going on or being missed. She said it’s unlikely as her ALT levels are normal so liver is essentially now fine.
They took bloods last night in hospital, also this morning, she’s given a stool sample too.
So now we’re just waiting to hear results and if she can come home for today or not. The doctor was going to put a canular in last night but didn’t as she’s coming home today so will put it in Sunday.
Her weight is still low at 46.8 kg, despite actually eating reasonably well. She eats little and often despite the pain and bloating that goes with it.
Her bilirubin rose to 367, last check was 362 so maybe this is the plateau they’re waiting for ...
She told the doctor we wondered if it could be pancreatitis but he said no as pain would be higher in her tummy and she’d be ‘very poorly’. If he could see her at hone he’d realise how very poorly she actually is!

So it’s a waiting game but at least we’re getting somewhere I feel.
We’ll definitely stagger visits when she’s in.
The biopsy is a small needle inserted through the side or back into the liver using ultrasound also. It’s over quickly but (I’ve read online) you have to then lie on the wound area for 6 hours to prevent clotting! That will definitely be a challenge for dd given how often she needs a wee!

It is really important that your dd has the biopsy sooner rather than later.

My sister had similar symptoms to your dd, at a similar age. She didn’t have a biopsy for a long time. When she eventually did it became clear that she was very, very ill indeed - and had almost reached a point where a transplant wasn’t possible. Fortunately she went on the list and in fact had her (first) transplant within a fortnight of her biopsy.

Good luck for next week.

Blimey that’s awful matilda ....hope everything worked out for your dsis.

Doctor has just done her rounds ... dd didn’t like her. She’s allowed home today and will return tomorrow. Dd asked her bilirubin levels and doctor just said they’re still levelling out and didn’t give her the actual number readings. Told her to stop taking her contraceptive pill, even though every other doctor we’ve told has said this isn’t a factor in dd’s levels. We spoke in depth about it with her liver doctor in clinic on Monday.

I don’t think the biopsy will find anything really as her ALT levels are now down to normal range ... took a long time for that to happen though! Can you remember your dsis’s levels when she had her biopsy? We’re being told that if there was a problem with her liver then her ALT levels would not have returned to normal.

Biopsy is on Monday.

I’m sorry, I can’t remember anything more - this was back in 1999.

My sister turned out to have primary sclerosing cholangitis - which at the time didn’t have the greatest long term prognosis. It might well have improved today.

I am glad she is having further investigations to rule out anything more serious than glandular fever. It does seem unusual to have such a prolonged jaundice.

I also hope she is getting some adequate pain relief.

livertox.nih.gov/Estrogens.htm

Thanks fret ... pain relief - there’s nothing that makes a difference so unfortunately no pain relief.

I’ve read about the jaundice link with the contraceptive pill ... but every doctor we’ve mentioned it to is not concerned that this is a cause or connected to it. She’s been on the pill for 4 years so I’m not sure why it would be an issue now? At the clinic on Monday, we talked in depth about the pill and the doctor said given all the history with levels etc then the pill is not likely to be a factor at all. All other doctors have not been concerned at all. Yet this 1 doctor today literally said “stop taking it, you don’t need it in hospital anyway” ... exact words. So, ok, but she needs it when she’s out of hospital obviously!?! The comment was so casual and demanding without any seeming thought for further consequences of stopping it.

Rude doctor.

Just another thought- has she had her thyroid tested? Very Rarely thyrotoxicosis presents with jaundice.

How is she getting on OP?

fret .. she has thyroid checked annually due to family history of under active thyroids. Think they checked it in the early days but not since.

UPDATE - so biopsy was supposed to be Monday, but they decided not to do one as her bilirubin levels dropped slightly on Friday and Saturday. However, level went back up on Monday so biopsy was ruled in again. They did this yesterday and said initial results show liver is no longer inflamed and not damaged (which they knew from her ALT levels anyway). There is cholestasis (which again they knew anyway due to her bilirubin levels). They said cholestasis was medication induced so said it was her pill! We’ve told every single doctor about her pill and they’ve not been concerned and not seen it as a factor AT ALL. Dd was very upset as implications of stopping her pill are huge for her due to severe, debilitating bleeding and pain. However, today the doctors have returned and said it’s NOT due to the pill! They say she’ll get better quicker if she stops her pill but will be likely to use it again in the future! They’ve said it is her body reacting to the glandular fever virus and this is all caused by it.

That’s in a nutshell ... there has been much more happened than what I’ve posted.

We’re waiting for the doctor to return so we can ask our many questions and find out why yesterday they blamed the pill, yet today it’s not the pill.

We feel no further forward at all!

Gosh it all sounds very frustrating

I'm checking in @Liverprobs
How are things now?

Thanks going ..... so after we were told it was caused by her contraceptive pill, then told the following morning that it WASN’T her pill but was actually her liver reacting to the glandular fever ... we were told the same evening by a different doctor that it was her pill and that she’s never had glandular fever or an inflamed liver!!! This last doctor clearly hadn’t read dd’s notes!

Angry doesn’t come in to it! We’ve literally been told different things by different doctors on a daily basis. So all we actually really know for definite is that dd is yellow!

She is to be seen in outpatients next week by the same doctor who has seen her in outpatients for a couple of weeks now. I will be armed with questions and a log of what happened in hospital re the biopsy.

It is absolutely ridiculous ... I can’t believe they can get things so wrong on so many levels so many times.

We are literally no further forward really. On a positive note though, her bilirubin has started to drop - this started to happen before her biopsy and before she stopped her pill. Symptom wise she is still the same. She still has huge pain in her tummy and it keeps travelling to her back.

VERY frustrating fret!

Update ... bloods yesterday- levels are RISING again! She stopped her pill 1 week ago, bilirubin now 468! Highest it’s ever been, ALK now rising, it’s 200+ highest it’s ever been, ALT on the up again, it’s 51 ...

I’m at a total loss. I’ve rang liver doctor but she’s off today so will ring me tomorrow.

I honestly just don’t know what to think anymore ...

It must be bloody terrifying!

Have you looked into finding another liver specialist, maybe emailing them? Can you afford a private consultant? I'm guessing a one off is about £200.

I haven’t looked into another liver specialist for a few reasons ..

1. I think/assume this is the only one in our area as dd was transferred to this hospital as it was the liver specialist.

1. Everything they’ve said so far is kind of plausible and makes sense ... but this past 2 weeks seems to see everything just falling apart!

1. I assume private doctors won’t be able to easily/quickly access dd’s records with levels/scan results etc ...

I could be totally wrong on all points! I’m thinking I’ll wait until Monday’s clinic but if no further forward then I’ll have to look in to alternatives.

You could spend tomorrow getting copies of her notes. Maybe PALs could assist
I'd also see if they would run all the tests that initially ruled things out again, in case they were wrong.

Liver doctor rang yesterday ... long story but basically, they’re starting dd on steroids for 1 week to see if they make a difference. Took her in to get bloods taken as gp only did basic LFT. Liver doctor wants to do the usual whole host of tests.

Took dd to a+e last night as she vomited twice and that was one of the things liver doctor said to look out for,. They did blood test (she’d only had them done 6 hours previous at liver hospital).

So mid afternoon her bilirubin was 483 - slight increase from few days previous. 6 hours later in a+e her bilirubin has jumped to 560!

A+e rang liver hospital ... they’re not concerned with her levels so don’t want her admitted there, they wanted local hospital to admit her overnight for observation and probably blood test today. Dd refused to stay in as by this point she’d not been sick again and felt much better, we’re at liver clinic on Monday and if things deteriorate we can go back to a+e.

I just want her better ....

Of course you do.

I find the whole thigh upsetting and I'm just a stranger reading on the Internet.
I would imagine if you had a name for what's wrong then at least you would know what you were up against.

There doesn't seem to be a strategy. It's as if they are waiting for it to get better on its own, like a virus.

I hope the coming week is better.

That’s the thing glitter .... they are waiting for it to get better by itself because it usually does. I’ve tried to research online and most Cholestasis sites are about the condition in pregnancy. All say the itching symptom is treated with the medication dd is taking ... it’s making ABSOLUTELY NO difference to dd - she is literally at times scratching herself til she bleeds. She has cool showers, uses moisturiser with and without menthol in, takes all the medication they say ... but there’s no let up

I just can’t understand how her levels continue to rise ... they’ve said they’re not sure really what to do which is why they’re trying steroids. They would normally just be used if the liver was inflamed and not improving - but there’s now no inflammation in the liver, her levels are back to normal (well, now starting to rise ever so slightly). They hope the steroids make a difference but they’ve not used them for bilirubin alone before.

This has been going on since the beginning of June now and it’s heartbreaking seeing the way she is suffering