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.

We’ve mentioned at every appointment that she takes the contraceptive pill ... not an issue. GP said pill is a contraindication of actual liver disease, not liver problems.

Consultant has said emphatically she does not have autoimmune condition so will not do a liver biopsy. As it is now only her bilirubin that is high, ALT and ALK are all back to normal levels. He said if it was autoimmune the ALT would not go back to normal by itself.

The liver doctor we saw on Friday also consulted with another doctor/consultant about the again rising bilirubin and the consensus is just to keep checking dd’s bloods every few days. They’re sure it just stems from glandular fever.

.... I’m not so sure but I feel there’s nothing we can do as we’re seeing liver specialists and keep getting told the same thing each time.

Sounds so worrying for you.

Despite what the dr said If she is not at risk of pregnancy perhaps consider stopping the contraceptive pill? The usual advice is to stop it immediately if jaundiced - see attached number 5.

fret .... I’ve looked at the British liver website from the beginning ... the problem is all the conditions have the same/very similar symptoms! I think they’re ruling out the conditions based on blood tests.

Contraceptive poll - dd has been on this from age 16 due to severe period issues. However she’s now in a steady relationship so needs it for contraception. I’ve mentioned it at every appointment and it’s not an issue. My own GP said it’s only a contra indication of liver disease, which dd doesn’t have,

We’ve not been given her latest blood levels but they must be increased again as they’ve brought her outpatient appointment forward. So we’ll know more next week and I have a list of questions ready!

I presume they've ruled out pregnancy.........?

www.leicestershospitals.nhs.uk/EasysiteWeb/getresource.axd?AssetID=31915&type=full&servicetype=Attachment

The link is to an explanation of the causes of jaundice depending on where the problem is. It may help you ask the appropriate questions at the next appointment.
I agree with previous poster - Littlebird88 - she may need an ERCP or similar type test.
Has she had an ultrasound since her bilirubin levels have rocketed?

Not pregnant thump

fret ... from the link this fits dd - B - Hepatic - Caused by hepatocyte damage. The most common cause being a cholestatic atypical drug reaction (e.g. antibiotics). Cirrhosis from any cause or viral hepatitis can also be implicated. Bloods will show excessively raised transaminases (e.g. ALT) and no dilated ducts on USS. as ALT was originally 800 but is now, after 6 weeks down to normal level. In this time, bilirubin has gone from 63 to 400.

However, C - Post-hepatic - Caused by a mechanical blockage in the biliary tree. Characterised by markedly raised alkaline phosphatise and dilated ducts on USS.
Symptoms of Obstructive Jaundice:
Dark urine and pale stools
Itch (which can be intense)
Features of infection (e.g. temperature, raised white cell count) Listless with loss of appetite ...this also fits but obstruction has been ruled out.

She’s not had an ultrasound since bilirubin increased ... I’ll definitely ask about that ...

Her tummy pain has always been behind her belly button - NEVER in the upper right abdomen associated with liver problems. The pain has moved to her lower back a few times. Over the past week and a half it keeps moving down her tummy like cramping pelvic pain.

I can't help OP other than to say DH had HepA and his bilirubin level got to 4000 at peak. He lived, but it was months before it got anywhere near normal. He had all sorts of investigations, scans etc and ultimately was found to have Barretts Oesophagus (co-incident to the HepA). He also has a hiatus hernia and his gallbladder isn't all it could be.
Hope she feels better soon, try not to worry too much about the bilirubin.

4000??? .... liver doctor said highest she’d seen was 500 ....!

My concern is the lack of cause. Originally her bilirubin was 63 and ALT was 800. Now bilirubin is 400 and ALT is normal.

Every cause has been ruled out and we’re left with virus that has attacked her liver. Virus has now gone from her blood but bilirubin continues to rise.

Brief symptoms now:-

Obviously, extreme jaundice.
Severely itchy all over, including internal orifices.
Severe pain in tummy.
Nausea.
Extreme fatigue.
Dark red urine.
Pale stools.
Weight loss.
Appetite loss.
Bloated, hard tummy.

Bilirubin continues to rise to a peak after the virus is effectively over. DH was feeling much better as his bilirubin soared, not peaking until two weeks after he became ill. It falls gradually.

Dd was mildly poorly at the beginning of May .... nothing like I’d expect glandular fever to be. She started going yellow at the beginning of June which is when we first discovered her raised LFT’s. At that time her bilirubin was 63 but her ALT was 875! Over the next 6 weeks as her ALT has dropped her bilirubin has increased. We’ve been waiting for over 4 weeks for her bilirubin to peak then start to fall. There seems no end in sight ... she feels so poorly/so many symptoms.

That is one helluva list of serious symptoms all told. Have you written those down and given that list to the hepatologist, so that she can realise the severity of what she's dealing with? I know some consultants can look at blood results and not listen to a patient's symptoms.

This is definitely a case for Dr. House!

How is her kidney function. I'd be concerned there's an element of ascites there..

I think there needs to be some cross-consulting across specialities here - e.g. gynae/surgical/medical/hepatology/nephrology etc.

Hepatologist seems content to leave her suffering with no solution or relief.
Would you say she's deteriorating or stable?

thump ... I went armed with an A4 sheet with EVERYTHING written on 😂

The hepatologist is lovely and has always listened and explained things to us. I asked if it was ok to go through our list 1 by 1 .... she said yes and then discussed every single thing in detail. So urine, stools, itching, jaundice, nausea, fatigue, appetite are all due to high bilirubin. Weight loss is obviously due to reduced appetite - but dd does eat little and often, drinks loads as she always has done. Pain in tummy could be due to liver but will only really be confirmed when bilirubin has gone down. If it’s still there after that then dd will be referred separately to investigate this, same as the bloated, hard tummy.

She had another ultrasound scan which sonographer said appeared normal. Her previous mri was completely normal. Doesn’t need another one. Kidneys, pancreas, gallbladder all normal. All other bloods normal.

The reason they’re sure it’s due to glandular fever is because all other blood levels are normal, if any of the other tests were raised then it would indicate a different problem.

So it is just sitting waiting. She’s not improving but not worsening either. They’ve given her some moisturiser with menthol in to see if it helps with the itching. The only other painkiller they can try will increase her ALT level so they’re reluctant to give her it as they don’t want to blur any results, or assume the raised ALT would be due to the medication and miss if it was actually rising for a different reason. They’ve changed her urso tablets to urso liquid as she was finding these very difficult to swallow and keep down.

Chatted about contraceptive pill being a possible cause. She said not as if it was due to this, her ALT would still be high and would not have returned to normal levels.

We’re back in a week.

Op I agree with your Sunday 18.58 post.
It does sound like she had intra hepatic (B) jaundice caused by GF back in May/June but things have changed and it sounds like now she has a post hepatic cause for her jaundice. I would really push for another US scan to look at the bile ducts as it does sound obstructive particularly she now has pale stools implying the bile is not getting into her gut.
Unfortunately sometimes people can have 2 or more things going on so I would not accept this is all G Fever related and am concerned there is a physical obstruction in the bile duct system.

fret ... she had another ultrasound on Monday ... sonographer said everything looked fine, I assume it is as doctor hasn’t rang me. Dd doesn’t have any signs of infection though and I think this is why they’re still thinking it’s all to do with GF.

I’m going to ring later and ask for Monday’s bilirubin level and double check the US. Also will talk more about the tummy pain as it’s seems to be getting more troublesome.

Ok, well what the doctor has said seems plausible then. I guess there's nothing much they can do until it resolves itself.

That’s my thinking too thump .... it’s been nice to see the same doctor because then we know that she knows everything and sees the whole picture ... continuity of care goes a long way. It’s especially good as she seems very good at her job - she listens to everything we say and explains things in depth.

So whilst it’s not ideal, it does seem to be a waiting game. The tummy pain is more of a concern as we’re all not convinced it’s to do with the liver. We’ll see what next week brings.

The reassuring thing is that a consultant or specialist in Hepatology will have studied for a minimum of 12 years including on the job experience obvs, so rest assured that her knowledge is much vaster than our combined guessing and stabbing in the dark here. Just continue to write down everything so that she has a complete picture all the time at every appointment.
Hopefully things will turn around soon.

Thanks thump .... it feels much better now we’ve got a rapport with one same doctor. Before, we saw a few different liver doctors, 1 said it was this, another said it was that ... and that just caused confusion and uncertainty.

However dd had a very bad week last week pain wise ... we talked about it with her doctor at her clinic appointment on Monday. Doctor and myself agreed this might not be part of liver problem, she said we’d know more when liver has settled. Since then, dd has still been really bad with pain, which moves to her back and lower down in her tummy. I really do think there’s something else going on - possibly pancreatitis. Earlier they said her pancreas looked fine ... can it change??

I’ve rang the doctors secretary today and asked for doctor to ring me back ,,, she’s not at work today but will ring my tomorrow. That seems a lifetime away when dd is in so much pain. Do I take her to a+e or wait until tomorrow? I fear if I take her to a+e they won’t really do much with her given the liver problem?

So doctor rang today ... they want to admit dd to hospital today with a view to doing a liver biopsy on Monday. Dd initially refused point blank to go in but has now reluctantly agreed as they’ve said she can stay overnight, come home tomorrow then go back Sunday ready for biopsy on Monday. I haven’t actually told her she needs to go back Sunday ... we’ll broach that tomorrow ...

Oh bless her. It's progress of sorts, yet worrying at the same time. I know you won't, but please please do not allow her to refuse any treatment/admissions.