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.

Is your dd in a liver unit? From my dsis’s experiences, I’d say this is essential. The consultants she initially had simply weren’t expert enough, and their lack of knowledge very nearly killed her (this is literal, not mumsnet hyperbole).

If your dd’s hospital is not a transplant centre, if it is at all possible she needs to get to one. Several people have said Kings, and I understand it’s brilliant, but my sister was at the Royal Free, and had a very positive experience.

matilda ... she’s on the liver ward at the liver specialists/transplant hospital in the North East.

Her bilirubin yesterday jumped to 519 but they’ve still allowed her home for the weekend as her coagulation is now normal.

Does anyone know if it’s possible she could have chron’s/colitis which is making her liver not able to get better?

My sister had chrohns, which is apparently often linked to primary sclerosing cholangitis (her liver disease) , and in fact, one of her consultants once said to her that he believed every patient with chrohns/ulcerative colitis should be screened for PSC. So they are obviously often linked.

My sister was diagnosed with liver disease over two decades ago, so things will have changed/research will have moved forward.

I'm sorry if my previous posts read fairly abruptly, btw, and I wish your dd well.

Thanks matilda ... and your post wasn’t abrupt

Dd doesn’t have PSC or any other liver related disease/problem ... no hepatitis virus, no other viruses, no scarring, no damage, bile ducts all fine.

Her cholestasis means her liver cells can’t process and get rid of bilirubin. That’s it. What seems like 1 little minor problem ... only with possible catastrophic consequences

I hope that this get sorted as soon as possible and your DD is better soon.

I was just watching 'diagnosis' a new series on Netflix. It's people with rare illnesses that haven't been diagnosed by doctors. In the first episode a girl has muscle pain, coffee coloured urine, and issues with bilirubin. They are looking at metabolic diseases etc for her.

Because apparently excess bilirubin can build up when muscles are being broken down

Hi OP
How are things this week?

snapple ... that’s interesting ... they say they know what’s wrong with dd, albeit in a very unusual and confusing way so far!

fret ... thanks for asking

So, she was allowed home for the weekend as nothing really happens in hospital on a weekend. We were told if she took bad just to go back to the ward, her room was hers and would still be hers when we returned on Sunday. We returned Sunday to find they’d given her room to another patient and put her in a bay with 5 old women. She refused to stay. Cutting a long story short, she was put on a completely different ward in a cubicle. The liver doctors came up to this ward to see her each day, bloods taken each day, so at least she was still seen by the correct team. Her daily care however leaves a lot to be desired.

Her potassium and b12 is now low so she’s been given supplements for them. Her coagulation is now almost normal, so classed as ok. They’ve sent bloods off to London for genetic testing, results will take 2-3 months. She has been let home today, I think mainly because she’s so unhappy on the other ward.

She has to return to day ward on Friday for bloods, then again on Tuesday and Thursday (as her liver doctor is on holiday). After that she will be seen in outpatient clinic as her doctor will be back off holiday. If anything is wrong with any of these bloods they’ll bring her back in. If we think something is wrong in the meantime we have to go to a+e and get transferred over to specialist hospital that way.

Professor still of the belief this is EBV, pill related, but said they might never get to the actual root cause, he expects her to get better but it will take months. In that time they have to just make sure things don’t get worse and affect her brain. Her bilirubin continues to rest at about 500.

It's awful being in limbo. Not being able to make any plans must be dreadful.

What stage of education is your DD at? Will she defer a year? She must be so miserable 💐

She’s 20 fret ... she works but has now been off for 3 months! She’s now on SSP so has literally nothing left after paying her car, phone and music.

The limbo is just awful ... we’ve literally done nothing with our other 2 during the summer holidays. We hope to go away in either October or Christmas to make up for it, but we can’t book anything until she improves

On a positive note, her tummy pain has gone! Just like that, out of the blue! Her eyes look yellow as oppose to DEEP yellow and her itching has greatly improved! It could be the new medication but I’m hoping she’s turned a corner - her blood tests don’t show this yet but fingers crossed. She’s still absolutely shattered though and can barely stay wake more than a couple of hours at a time.

That sounds quite positive! When I had choleostasis the first sign of improvement was becoming less jaundiced, then the itching started to lessen - the test results took a little while to show any improvement. I was definitely shattered for a good while after though, partly because of the sleep deficit from itching all night.

Really hope she's turned a corner, and you all get to go on a nice break soon :)

That’s good to hear, thanks alexis. I hope this happens with dd and it all just settles eventually.

I’ve googled wording on dd’s hospital discharge letter - severe bilirubinostatis with giant cell transformation of hepatocytes .... and from what I can find, it is extremely rare in adults ....and not good prognosis ...

@Liverprobs how is your daughter? X

Have read about 80% thread, so apologies if already done. But, porphyria?

Thanks for the thought joan ... it doesn’t sound like this condition. Bloods have been sent to London for genetic testing so maybe they would test for this anyway?

Hi claire ... so good update - latest bloods show drop in bilirubin to 367!! I know this is still high but it’s much lower than the highest peak! We’re ecstatic! Hopefully we have turned a corner and are now on the road to recovery!

So tummy pain is still gone. Generally dd’s eyes are less yellow (although yesterday she started looking more yellow again). Itching is MUCH less. She’s definitely brighter and chirpier in herself.

Should get yesterday’s blood results today .... will be interesting to see what the bilirubin is given that she looked more yellow yesterday.

She also has different sensation in her tummy now and has vomited twice in 4 days ... hope it’s nothing.

Jeez it’s an absolute rollercoaster for your daughter. That’s good her bilirubin dropped but worrying about the jaundice and sickness.

How is she now @Liverprobs ?

Hi glitter ... bilirubin end of last week was 308 which is a fantastic drop! On the whole dd feels much better. However she’s still very yellow, more so yesterday and today, no more vomiting but feels sick later in the days as oppose to mornings/lunchtimes. Still getting pain/sensation in tummy.

Had bloods today but no results yet.

I really hope this is the start of the big improvement.
I'm a parent to older teens and the need to help them never leaves us.

Please keep us all updated. Good luck

@Liverprobs - how has the week been?

Do hope she is steadily improving 🤞

I’ve just come across this thread, and just wanted to wish your DD (and you) well. What a nightmare few months you have been through. I hope she is improving.

Hi glitter, fret.
Hi sipper ... thank you.

So, bloods taken on Monday, I rang for results on Wednesday as dd had a few bad days (feeling VERY sickly) ... doctor rang me back on Thursday only to discover liver function tests were NOT performed on Monday’s bloods!! I cannot fathom why!?! She’s had LFT’S performed on every set of bloods taken since June!! It makes no sense at all. Anyway, we’re back in clinic tomorrow thankfully. On the whole dd looks much less yellow, much chirpier in herself so I definitely think we’re getting there. Her days of severe nausea I’m just putting down to bilirubin still being too high, even though it’s reducing.

On a negative side, she’s been bleeding (period wise) every day since stopping her contraceptive pill on 5 August

She wants this sorting but the only option at the moment is copper coil ... she’s refusing point blank to have this. She’s also come down with a nasty virus that we’ve all had as a family. She can’t take any painkillers and I imagine this will raise her lft’s again ... as it has my own!

I've followed her story since the start. It's relentless. Unbelievable about the test being missed.

I would suggest that the coil is better than the liver issue. I'm sure she knows that deep down.

I suppose her liver needs to fully recover before she dares even think about the Pill again. Although I'd be put off forever.

I continue to hope for a good week for you all.