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.

Your poor DD, this sounds awful. The only thing I would say and mind this is from a dataset of 2, that doesn’t sound much like glandular fever. Of course it could be GF and something else but not GF on its own going on my own and my then bf’s symptoms which were all about neck glands, sore throat, and extreme fatigue.

I hope you get to the bottom of this soon and start to see an improvement in her.

I don’t have private healthcare/insurance so I’m not sure I can ...
My only solace is that at least on Tuesday we’ll be further forward as I’m sure they’ll have to do a liver biopsy.

But, I don’t know whether to ring them today ... dd is still in same pain despite yet more different painkillers. She still feels nauseous and can’t eat much. Because everything is coming back negative/normal I honestly don’t think they’ll do anything yet.

I have a feeling that if I go to the GP they’ll just tell me to get in touch with the liver department.

I feel trapped.

Might sound a bit random but have they checked for Coeliac disease? Nausea, bloating, abdominal pain are all the classic symptoms but poor liver function is also more common than many people realise. There's a long list of symptoms and it's like a pick and mix menu. It's possible to have several or very few and it's not always the digestive issues that are the most acute. I'm a Coeliac and never had a 'typical' symptom in my life.
Hope you get some answers it must be very worrying

another thought, Echinococcus multilocularis.

has she been abroad in an at risk area, eaten raw meat, berries in the forest?

Doesn’t seem like coeliac or Echinococcus.

Symptoms started 8 weeks ago with virus type. Very sore tummy, nausea, extreme fatigue, swollen glands in neck. After 3 weeks, glands went down, pain and nausea were bear able. Then tummy pain and nausea worsened drastically making her unable to eat. Jaundice then set in.

That was when they found the raised LFT’s and it has gone downhill from there.

So dd is no better. ... still yellow, still can’t eat, still in pain, still itchy. Roll on Tuesday.

Just wondering if she could have the start of Lymes disease. Any chance she could have been bitten by a tick - not everyone gets the bulls eye rash.

Very unlikely to be Lymes ...

We’re back at hospital tomorrow, more than likely for a liver biopsy. I’ve googled (on the off chance) liver cancer ... her symptoms to a tee ... I’m assuming it is not this ...

She’s lost 12lb in weight in 8 weeks ... I assume just due to the fact that she can’t eat due to pain, feeling full and bloated.

Wouldn’t that have shown up on the MRI? My Mum has similar symptoms with pancreatic cancer but it was clearly visible on the ultrasound. I totally understand your worry. Any chance you can get mega pushy tomorrow and insist on her being admitted until they get to the bottom of it? Alternatively if you can afford it I would go for a private consultation. You can have the consultation and I would hope get referred back into the NHS? Loads of tests have already been done including MRI’d etc.

claire ... I’d never thought about whether it would show on mri ... makes sense. They’ve just said her liver is enlarged.

They said last week that if her bilirubin is the same or more this week then they would do a liver biopsy.
The medications they gave her for pain has not worked. The itchy medication also has not worked.

I’m finding it very difficult because everything I say or ask they justify as to why it’s a virus causing the problems. in my gut, I just strongly feel this isn’t the case. She’s not showing any signs of a virus at all. The doctor last week told me in a very stern, but friendly, way that he needs me to understand this virus can take months to get over, and dd can feel this way for months. But honestly, I just don’t get it.

I say trust your gut feel. I would ask for a second opinion. Absolutely. Are you back at the hospital today? X

They’re admitting her for a few days to get her pain and itching under control and to do s liver biopsy.
Doctor said it’s not haemochtomotosis as her iron levels/function are all normal. Not primary biliary cirrhosis as she’s too young and would show in a scan (I think), not liver cancer as that would show on scan. He thinks it could be an autoimmune condition that is not shown up on blood tests.
So we’ll know more after the biopsy. He said he liver is not failing atm because she’s young and healthy, but “we need to work out what’s happening “ .., I said that weeks ago! But at least we’re moving forward.

Had her levels gone up today too?

Just been back with latest results. Yes they’re (bilirubin) up again today ... rising each time they’re checked. Doctor now says probably autoimmune hepatitis .. biopsy looking like Thursday.

As much as no one likes to be admitted hopefully they are now going to get to the bottom of what is going on. Your poor girl. X

Thank you everyone. It’s been a rollercoaster day. I’m currently staying overnight with dd as she had an absolute meltdown/shut down on the ward. She’s in til at least Friday...

I was about to say autoimmune hepatitis but it looks like the docs are now looking into that.

If that’s what it is, it’s a long road to recovery, involving a lot of steroids, but it is survivable. I work with a nurse who had it and she’s back to working full time. It has taken her a while to lose the weight from the steroids but that’s the only longer term issue it has left her with.

I hope it all turns out OK for your poor DD

So ... the consultant has just been ... they’re NOT doing a biopsy .. he said it’s been glandular fever, bloods show it’s now cleared her system and her bilirubin will come down in time. He’s giving her medication to help bring this down ...

I don’t even know what to think anymore ...

We’re out of hospital now ... bilirubin is still on the rise, they checked it each day in hospital. We have an outpatient appointment in clinic next week. She’s on medication for sickness, itching, pain and to reduce inflammation in the liver.

I guess it’s a waiting game all over again ... [sigh, sigh]

Hmmm How are her symptoms now? Are the LFTs going down?

Yes LFT’s are now down to almost normal ... after 2 months. ALT started at 800+ ..it’s now 50. That’s why they say it’s not autoimmune, because if it was the LFT’s would not come down.

Her bilirubin started at 63, it’s now 298. So that’s continuing to rise. They expect it to reach a peak then come down .... they’ve been saying this for 2 weeks as it’s been rising and are very non committal about when it will come down, how high it can safely go and how long they’ll let this continue.

Her symptoms are just the same ... very itchy, feeling bloated and nauseous, pain in tummy easing from complete hospital rest. I’m hoping the tummy pain stays down, it fluctuates daily.

So we’re now back to square one pain wise .... it eased while in hospital and for 1 day after ... but that’s the way it has been from the beginning.

So as of today, she’s been in bad pain for 3 days, still feels sick, still struggling to eat, still very tired and very itchy.

Our outpatient appointment has just come through for this Friday ... still 4 days away...

How are you and your DD OP? I'm sorry to read your updates and to hear she is in so much discomfort.
I really hope they manage to get to the bottom of this as soon as possible for you both

What's the meds they've given for the itch? Sometimes, ceterizine or chlorphenamine can relieve the itch a bit - though I know they do give a specific one for the liver (I was on it but can't remember the name - but I found it didn't work). Also, twice daily showers using no products (just warm water - not too hot) but moisturising well afterwards can relieve the itch (I found cocoa butter to be the best - some pound shops have large tubs of it for a pound).

I sympathise with the itch. Is she still in hospital?
I presume they've checked for ascites? Though her LFTs would be higher if she had that I think. Ascites is where the organs (particularly kidneys) can't dispose of fluids as the liver isn't producing whatever the kidneys need to work, so the fluid builds up in the abdomen - and it's fucking painful. Given that she's under a hepatologist though I'm pretty sure they know a helluva lot more than me. Are they consultants cross-consulting i.e. a gastroenterologist and the hepatologist for example? Sometimes two heads are better than one...