Terrified - unknown liver problem - no one knows what's wrong

[Bibijayne]

31+5

I feel like a patient in an episode of House.

I've had various usual complaints during pregnancy (aches etc. and GD) but the last two weeks I've been getting progressively sicker.

Had a 5 day inpatient stay last week - lots of tests, 2 US and an MRI.

It looked like I may have had a gallstone pass (no sign of any gallstones in gallbladder, but swollen bile duct on liver and inflamed pancreas. My amylase and ALT levels were high. After a few days the amylase dropped and my ALT looked stable - so I was discharged and told to take it easy. (Amylase went from 40 to 300 back to 40. ALT was 550 but gradually dropping).

Was a bit sick/ nauseous over last weekend - initially out it down to heat and still feeling a bit fragile. Monday afternoon I came over all weird and started projectile vomiting pink bile. Movements seemed off. But they often do if I feel unwell.

Went to the obstetric assesment unit. Baby (as usual) woke up the moment they tried to monitor him. They took some bloods as a precaution.

My ALT had risen to 760. So I was kept in. Tuesday it was slightly lower at 724.

The doctors are all utterly baffled. My liver is inflamed. The bile ducts look swollen - but there is nothing there or in my gallbladder. No masses/ stones/ anything. I'm uncomfortable all the time and get bouts of absolute agony on my right side (back all through to front).

Infection markers have come back as clear. My blood pressure is normal (though has dropped to low a couple of times).

I can barely eat. I'm losing weight rapidly - be ready thought I'd be grateful for starting pregnancy as a larger lady... I now weigh less than when I conceived.

Baby is fine and growing - but I seem to be failing fast and no one knows why.

I'm bloody terrified. I'm worried for me and I'm worried for my baby. At some point I'm not going to be able to take the brunt of whatever is screwing with my liver and crap will start crossing the placenta (looks okay now).

Any advice? Even if it's just ways to hold it together a bit at the moment. I'm trying to keep upbeat. The midwives and doctors are really lovely. But every day I'm finding it harder and harder.

My poor husband is so stressed and worried. He's trying to keep busy and visiting me regularly. But he looks like he's desperately trying not to cry.

It's supposed to be our first wedding anniversary on Saturday. We were going to have a chilled long weekend - take the dog for a walk on a beach and have a nice dinner somewhere and just cuddle up and enjoy each other's company. Instead I'm going to be stuck in hospital and he's frantically trying to sort out house stuff in case baby needs to come very early. It's our first baby - and while I had grumbkes about all the usual stuff like morning sickness etc. it seemed to be going pretty well. I don't know what to do.

Im so sorry your going through all this .. I'm not a doctor however can I suggest that you change your diet google fatty liver and foods that are healthy for liver

Poor you. I hope they figure it out soon.

Thanks all.

@Jupiterrose I was trying to follow advice on good for liver and good for gestational diabetes foods. But yesterday the consultants (Ob and liver) told me to eat whatever I can and they'll deal with bloods/ issues arising - I've lost two stone in the last month and they're worried that I'm just not getting enough food at all at the moment.

I really hope they can find a solution soon.

Are you in the hospital now? That is a good thing. I presume the doctors have tested according to the so-called Swansea critera or similar. It says here on a web page about similar problems that "Mothers recover in about 1 to 3 weeks post-delivery". (Source: NEJM Journal watch, The only advice is to trust the doctors they know what they're doing, and to "hang in there" for the remainder of your pregnancy.

Not the same situation but I had liver and kidney problems in my pregnancy due to HG. Like you I was advised to eat whatever I could keep down and I was in and out of hospital constantly.

I'm now 10 months post partum and everything is completely back to normal.

Here's a fact sheet, you can have your hubby look at it for you so you don't have to read yourself: www.britishlivertrust.org.uk/liver-information/liver-conditions/acute-fatty-liver-of-pregnancy/

Thank you

@38712 yup in hospital. I think I'm being kept of for a while now. They don't want me going home until they've gotten to the bottom of this.

@Rockandrollwithit glad to hear you're better.

Have they checked for HELLP syndrome? It doesn’t always present with pre eclampsia. This was me - all fine once the birth happened!

I think they're checking - but my understanding was any platelet count looked okay.

When I had GD in both my pregnancies the consultant kept telling me about certain hormones affecting the liver. I can’t remember what it was now to be honest but just thought I will put it out there for you to perhaps ask your consultant? Good luck. 32 weeks is a good gestation. My daughter was born at 37 weeks but measured only 33 weeks consistently. She was born a little scrawny thing but made great progress with no issues. Wishing you all the best x

Thank you.

I'm getting the impression I'm going nowhere any time soon. Obstetrics want to get me to 37 weeks (if possible) but the gastro/liver team have said if my results don't get better soon/ get any worse they want to organise an emergency C-section to prevent me getting any permanent liver damage or stuff crossing the placenta to baby.

So far baby boy appears okay. Good growth (a bit big, but not tons, measuring closer to 33 weeks than 32) and very wriggly on the CTG.

We have an army of friends and family helping out. A few friends and family are helping my DH with a bit of gardening and putting together nursery furniture this weekend. I've had quite a few visitors pop in to cheer me up. We're feelibg very loved at the moment.

It's great that they have a plan for you, how to deal with it! You sound so much better now, more at ease.

Great news you have lots of friends ready to help out. Hope you are feeling okay today op.

Thanks :)

Yeah - feeling really lucky and really loved. I have an ultrasound to look at my portal vein tomorrow - I think they're going through everything now :)

Will be monitored over the weekend. Hubbie and I will just have to celebrate our wedding anniversary late - who knows, we may even be celebrating with a baby? :)

I'm really appreciating all the care and kind words I'm getting from everywhere - including internet strangers :) I think we've got this. It may be a bit of the unknown but baby, hubbie and I are really being looked after. Xxx

Didn't want to read and run!

I don't have any advice but just wanted to say that I hope they get to the bottom of what's making you unwell and I hope you and baby are ok! Xxxx (hugs to your poor dh as well) xxxx

Thank you. I think he needs all the hugs. He looked so sad when he realised I'm unlikely to be home for our first wedding anniversary tomorrow.

A day is just a day, like any other. You could celebrate the anniversary later at any date you decide to pick, later on this year, and have that as "your" anniversary, and that will be both celebrating your wedding AND celebrating that you've made a full recovery!

OP have they investigated for cholangitis or cholestasis?

I'm on Urso for OC because I did have raised bile acids and itching, though these are back to normal. Just over a fortnight ago they were 15 (max limit is 14) they then went to 21 on my first hospital stint of the last two weeks - but after a lot of pain overnight - went back to 7. They've stayed within normal ranges since then but they are being checked and monitored.

They can't work out the high ALT. Last Thursday when I was discharged from first stay (Sun - Thurs) they'd gone down to 500 - which is still high, but they were going down. I came in Monday this week and they'd jumped to 760. They've come down a bit (were 605 yesterday) but so far there's no obvious cause. My bile duct is very inflamed but there's no blockages. Also - despite a lot of pain and symptoms indicating gallstones (pain after food, especially anything with fat, radiating pain from below right shoulder blade round to the front etc.) my gallbladder is not inflamed and is entirely empty and free of gallstones (though surgery are still keen to take it out post baby). I had another ultrasound yesterday to check out the portal vein (no clots, thrombosis or blockages) common bile duct (totally clear) and the area in general. My liver is swollen and the bile ducts especially. Which seems to be the main issue with pain and raised enzyme levels but so far there's no clear reason why. All the virology tests are totally clear (they checked everything under the sun - even some more.obscure options like Hep E) and there's no markers for any autoimmune diseases. Waiting for a review from the gastro/ liver team, but at the moment everyone is puzzled.

Baby seems totally fine and healthy at the moment. CTG traces all good. Which is a massive relief. But i'm not fairing so well. I've lost all weight gained in pregnancy plus a fair bit more on top. Looking at around 25lbs in the last 5/6 weeks. And that's with baby growing steadily atthe 60th percentile. I'm struggling to eat and keep food down. When I do keep food down it tends to go straight through me.

I realise this was a while ago! Hoping you and baby are now fine and flourishing. Just wondering if they ever got to the bottom of this as I'm kind of in the same boat! Thanks x

Hi... Hope everything worked out. Any updates? X