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.

Oh, just read your second post - I see you're out of hospital..

And I know the sort of itch isn't exactly topical - it feels like it's more under the skin so to speak - hard to describe. I really feel for her.

Sorry - should have said ceterizine can be got in the poundshop also and chlorphenamine is Piriton - both antihistamines.
I'd possibly ask the hepatologist before adding your own meds into the mix as everything being processed by the liver can add to the distress it's under.
What are they giving her for pain relief? Again, they don't give your typical meds usually if they feel the liver is under strain.

What is bilirubin btw? I've a feeling I should know what it is, but just can't quite recall it

Also, you mentioned a liver biopsy - which they've since taken off the table - is she also under a surgeon?

Ok, googled bilirubin and I know what it is now - is she vomiting bile? Yellow substance?

She’s tried cetirizine, loratadine and piriton ... no effect. She’s on colesevelam and Ursodeoxycholic acid. One if for the itching, one is to reduce inflammation in the liver. She doesn’t take her sickness tablets now as they don’t help at all. For pain she has tried codeine, tramadol, nefapam and oramorph - none of which did anything so now she’s not taking any pain relief.

No vomiting but feels very nauseous
.
I’m not sure who she’s actually seen ... I’m just told liver specialists .... she has an appointment at the Hepatology clinic at the end of the week.

Liver doctor we saw said glandular fever caused this, then said a different day it wasn’t and he suspected autoimmune condition. Liver biopsy wanted.

Consultant then saw her in hospital and said biopsy not needed ... this is a result of glandular fever.

So it’s obviously great news that her LFT’s are all now within normal range .... but her symptoms are EXACTLY the same as when we first started seeing someone over 5 weeks ago! Only her bilirubin is now high and they expect that to drop .... but in 5 weeks it’s just continued climbing. They keep saying they expect it to plateau then drop. We’re told that every week!

I’ve asked if another organ could be bad and causing these problems but was told no.

Op good news that lft's are down but so sorry for your dd that the symptoms are no better. If they suspect an autoimmune condition it is very common to have more than one so it may be that the symptoms could be caused multiple conditions in conjunction with each other. How frustrating the doctors keep changing what they suspect the cause is. Doesn't exactly instil confidence - which is what you both need in circumstances like this.

Ursodeoxycholic acid is the one I was on. I didn't notice any effect.

Can she try the showers, not hot, no detergent, but twice a day and moisturise, moisturise, moisturise.

It's the same sort of itching as some women get during pregnancy. It's very annoying as there's nothing visible to scratch and you scratch one place where you think the itch is, and then discover it's actually another place you need to scratch!

If they said liver specialist - that would be a Hepatologist. Hepatology is liver specialism. I'm under one and have to go for a check up on 5th August I think.

I mentioned ascites - have they checked (I'm sure they have) during a physical exam for signs of that? Typically it would be a bloated and hard to the touch abdomen and maybe not going to the toilet for days on end.

It sounds like something that is attacking all her organs in some way, though if they have her under hepatology they appear to have concluded it's originating with the liver perhaps.

Re the nausea - if she actually managed to vomit, and vomit for long enough that the yellow bile comes up, she will get some relief from the nausea.
I really feel for her.
I'm sure they've ruled out everything under the sun including pancreatitis. I've ran the gamut of similar ailments though mine have a reason behind it - too much alcohol.

As she's just a teen, that's not her problem obviously.

I'm confused as to whether they've rule in or out glandular fever?

It must be as frustrating for the doctors as it is for you and your poor dd to not have any discernible cause for this. Is she still losing weight? Was she healthy prior to all this?

Healthy before all this ... only real problem has been VERY heavy, painful, debilitating periods - bleeding every 2 weeks and VERY heavy each time since starting age 12. That’s all.

LFT’s now normal but bilirubin high - 290.

5 weeks ago bloods showed ‘mildly positive ‘ for EBV (glandular fever. We were told they test for antibodies to the virus and she showed small amount.. you only get these antibodies once you’ve had the virus. So they concluded she’d had glandular fever and it attacked her liver. Then they said it wasn’t glandular fever but autoimmune condition. Then they said not autoimmune as LFT’s wouldn’t comedown on their own if it was this, so back to glandular fever.

Her tummy is bloated but she’s so slim that others wouldn’t notice if that makes sense? She’s goes to the toilet every 2-3 days which has always been normal for her.

She got referred to liver specialists due to her raised LFT’s and jaundice. I’ve asked if other organs could be affected/at fault but got told no.

She’s not a typical teen - doesn’t socialise much and very rarely drinks. This literally just seemed to happen out of the blue.

She was 8 stone 3 ... last weigh in was 7 stone 3 ... she’s 5 ft 3, slim build. All she can wear is leggings due to the pain and bloating. She said yesterday even her leggings are baggy on her now and her pyjamas don’t fit, they’re all too big.

Interesting you mention periods. I've had a GP tell me that fucked up liver function can leave your blood clotting fucked up which can lead to heavy bleeding.

I'm also under a gynaecologist as well as the hepatologist.
I think the more she mentions the better the picture they can build up. What she/you might not think are connected can sometimes be connected.

By 'going to the toilet' I meant urinating. Or decreased urination. But if her clothes are falling off her that doesn't sound like it's an issue.

I would mention the heavy periods to the hepatologist (realise you've had that appointment), but just reiterate it - they normally just ask when your last period was, rather than asking whether it was haemorrhaging for 6 days for e.g.
I think the two may be connected somehow.

I'm also 5' 3 and at my sickest was 6 and a half stone. I was literally vomiting all day every day. 9 months I spent like that. My partner at the time actually recoiled in horror one day putting his hand on my leg as all he could feel was bone (he has a phobia of bones).

My aunt, a nurse, eventually persuaded me to go into hospital and to tell them the symptoms as they are on the worst day. Not as they might be at that moment. I did, they fixed me up, and I was so grateful to the doctors and nurses and my aunt for telling me to 'exaggerate' to an extent.

Sometimes you need to tell them the symptoms as if you're on your worst hour. So that they can fully appreciate what the hell is going on. If you say ' No I've no pain now but i will in an hour ' they tend to ignore you.

Did you have the appointment with the hepatologist today?

sphincter of oddi dysdunction pr a biliary tree or pancreatic duct issue.
v v difficult to see on a scan.
needs a specialised endoscopy.

thump .... sorry I thought you meant bowel movements . Her urine frequency is fine. Very dark coloured but that’s expected due to her high bilirubin. We’ve mentioned periods to most doctors, they all seem unconcerned. They check her blood clotting each time I think, it’s always fine.

Had the appointment yesterday ... saw a different doctor in clinic. Dd said she can eat better now - I said, yes dd but that can change on a daily basis .... dd said she didn’t have much pain now ... again, I said yes dd but that changes daily. I told doctor that dd can have days in a row where she’s absolutely debilitated and cannot move for pain/nausea/fatigue, then she can have a couple of what we call good days where she can eat reasonably, stay awake for more than a few hours and feels less nauseous. I strongly stressed that her days and symptoms are up and down to extremes.

I asked how they were certain this was EBV/glandular fever as this has been ruled in out and in again! She said there are 2 types of antibodies they check ... 1 is to see if you have any antibodies which if positive means you’ve had EBV at some point in your life, 1 is to see if you’ve had it recently. Dd’s bloods show she’s had EBV recently and also show the virus is now out of her system. Therefore, given that all other tests have come back clear, they know it’s EBV and it has attacked her liver.

The fact that her LFT’s are now normal levels means there’s no cell damage in her liver. Her raised bilirubin is ok by itself and they expect it to drop soon and will keep checking dd until this happens.

They’ve upped her dosage of Ursodeoxycholic acid - this is for the bile ducts?

They will see her in 2 weeks. If they’re concerned about her blood results from yesterday they will ring us over the weekend and will see her sooner.

They’ve said all ducts etc are fine, no blockages, no stones. If her bilirubin is still high, (think I’ll ring in Monday to find out level), I’ll ask at our next appointment about this.

In my heart I think they’re missing something. I asked how high bilirubin can safely go and how long they leave it to come down ... she said she’d seen patients with a level of 500, dd’s is 300. She said it can take 8 weeks .... I said we’ve been being seen for 6 weeks and it’s continued to climb from day 1. She wasn’t concerned. She just said if she gets confused, unwell she must go straight to GP who then must ring the liver team.

Sounds like a frustrating wait and see game for you then. Hopefully her levels will start to come down soon.

I’m fed up of the wait and see ... it’s been 6 weeks of it now

OP the Urso is prescribed for bile problems. DH has primary sclerosing cholangitis, which you have said they ruled out, but he has similar symptoms - bloating, pain at times in upper abdomen, itching, which the urso doesn't really address so he takes Benedryl 3 per day acrivastine and has a shower as a pp suggested (a regular occurrence now between 1 and 3 am). His diagnosis followed 15 months weight loss of 20% of body weight and the fatigue is overwhelming.
I do hope your DD does improve but you are clearly 'on the case'.

polly ... she was prescribed the urso to help the bile ‘stick together’ and be more easily removed from her system. She’s been taking it for 2 weeks now and it’s made no difference so far ... she’s on colesavelam for itching but it doesn’t help .. has tried various allergy tablets but they haven’t helped.

The hospital rang yesterday to say her bilirubin has risen again, latest bloods show level of 367 (despite taking urso) .... they want to take blood again on Tuesday (4 days after the last lot). We need to keep an eye on her to make sure the bilirubin doesn’t become toxic.

Sigh ... sigh ...

Have showers helped the itch? They can also help the nausea. If she can actually manage to throw up it might help her too..........

She just feels sick thump .... never actually been sick.shes felt like this from the beginning ...
Showers - she’s not having as many as you recommend .... she’s so exhausted that she can’t be bothered ... also has long think hair so that’s an issue ... also has rigidity of thinking and “can’t have showers through the day”. She is having daily showers and putting plenty moisturiser on too but it’s not really making a difference.

She’s tried going back to work yesterday for a few hours. Today she’s having a VERY bad day. Not sure if it’s connected with going to work or just another bad day.

A few thoughts : Has she stopped her contraceptive pill? It is contraindicated in patients with hepatic impairment.

Also has she been tested for autoimmune liver disease such as primary biliary cholangitis?

This is a good website for info about liver disorders.

www.britishlivertrust.org.uk/