Obstetric cholestasis that led to Primary Biliary Cholangitis

[lauralocks123]

Hi all, I have a few elevated liver functioning tests that led to me getting a fibroscan. That result was 4.8. The consultant believes I could have PBC but is waiting for additional bloods to come back before official diagnosis. I had obstetric cholestasis during pregnancy last year and my levels never went completely back to normal. Gp kept testing liver functioning and finally sent me to consultant last week. Looks like if I do have it it is very early stages. Did anyone ouT there have it start in pregnancy? Did you have subsequent successful pregnancies and how bad did it get during pregnancy post PBC diagnosis?

[Hidden]

Hello lauralocks123.

I have read on this site previously that some have had the cholestasis in pregnancy and have PBC but I've never had it when I was pregnant years ago with my 2 children (I am now 52, diagnosed when I was 46).

I have responded to your posting as you might be thinking on the lines that PBC if you are unfortunate to be diagnosed with it that there might be a connection. I have been thinking of allsorts of things in the last 6 years, something that we all have in common that somehow kick started our PBC. Given a small percentage of the male population develop PBC it baffles me that bit more.

[lauralocks123 in reply to Hidden]

Thanks for your reply. My consultant believes that pregnancy kickstarted this for me. I had a blood test in the early stage of pregnancy is 12 weeks and it was fine then. She says she sees lots of women who had obs chole and go on to get pbc.

[DPcpa]

I was dx post pregnancy. No issues in pregnancy and my enzymes were fine upon admission to deliver my daughter. My delivery went a bit crazy and I ended up needing 3 liters blood transfused, the day after transfusions liver enzymes were elevated. My bp followed up 2 months post partum and they were even higher. I am asymptomatic but have mildly elevated alk phos still after 5 months on meds. I asked about this and my hep said that it's often caught in or during pregnancy due to the close monitoring. They believe heavy body stress is what kicks it in... My delivery was certainly that! You can have more kids he told me...some improve some get worse, most stay same track...

[cazer]

Yes was diag when son was 3 months old.didnt have anymore children as he was last of 4 .

I do believe pregnancy makes pbc worse butt thats just my opinion.

Best wishes cazer.

Please feel free to ask more

[lauralocks123 in reply to cazer]

Hi Cazer, thanks for the reply. May I ask what led up to your diagnosis eg what tests did you have apart from bloods? Thanks, Laura

[cazer in reply to lauralocks123]

Was really poorly whilst pregnant and had glandular fever at same time.regular bloods as lfts way upand ultra scans.consultant had a hunch he knew what it was and didnt think it was cholestasis.

Lost quite bit of blood during delivery but didmt have transfusion as that would have messed up bld tests.

Consult said if all returned to normal then it was cholestasis but it didnt and when baby was 3months old had a biopsy which confimed pbc.

His mate was prof at queen elizabeths so git referred up there .feel free to ask more.were yoi diag after pregnancy ?cheers cazer.

[lauralocks123]

Hi Cazer, I have not been officially diagnosed yet but consultant thinks this is what it is.

May I ask what stage your PBC is at and do you have any symptoms?

The consultant said she would put me on Ursofalk if she can confirm diagnosis.

Thanks for coming back to me.

Laura

[Kate50]

Hi Laura , I was suspected of having pbc when pregnant with my daughter who is almost 15, it was confirmed after a biopsy when she was 9 weeks old, I also have twins who are now 11 obviously born after diagnosis, for me personally , I have a fantastic liver doctor who is very supportive and was always only a phone call away which was very reassuring, gps and the maternity units were a different story and I think it was because a lot is still unknown about pbc, I am now one year post transplant and wake up every day with a smile thankful to be here , if I can help or give advice in anyway please feel free to message me, take care Mandy 💕

[lauralocks123]

Thanks for your reply. May I ask when you were diagnosed what stage was your disease and how quickly did it progress up to the stage you needed transplant? Do you think the pregnancy you had after diagnosis progressed the disease more quickly? Thanks, Laura

[Kate50 in reply to lauralocks123]

Hi Laura I was diagnosed Jan 02 as stage 1, although they do say staging at biopsy is not accurate as there can be different stages throughout the liver, I received my transplant September 2015, I was told the pbc in my case was fairly aggressive and didn't respond to urso, during my pregnancies my pbc seemed to go into a kind of remission but after delivery it went a bit crazy but then settled down so the answer is I don't know if the pregnancies caused things to speed up and the experts don't know either that's the thing with pbc a lot of our questions remain unanswered , but try not to worry or stress yourself out, I know that's easier said than done, but there are a lot of people who have pbc that never have any problems , take care 😘

[rubyrose15415]

I was diagnosed with cholestasis (ICP) with my first daughter then much like you my levels never returned to normal and eventually got a PBC diagnosis about 10 months pp. there is no way of telling which came first as I never had any relevant blood tests taken before I was pregnant. That was nearly 3 years ago. Since then I have had a second daughter who was stillborn due to ICP despite being on urso throughout the pregnancy and having had an early diagnosis of ICP at around 21 weeks. I don't want this to be a scare story as I know I am a rare statistic but facts are that you are highly likely to suffer ICP in subsequent pregnancies even without a PBC diagnosis. Also facts are that when managed ICP usually does not result in such a tragic outcome as mine. ICP Support is an amazing charity for more info and source of medical research - join the Facebook group if you haven't already.

[lauralocks123 in reply to rubyrose15415]

Thanks for your reply. I'm so sorry for your loss. May I ask what stage your PBC was at when you were finally diagnosed?

[rubyrose15415 in reply to lauralocks123]

So I haven't been staged as they didn't feel biopsy was necessary yet but I am pretty asymptomatic and fibroscan was 3. LFTs are only mildly deranged since on urso

[lauralocks123]

My fibroscan was 4.8. I have 2 bloods that are slightly elevated and one that is double what it should be (AST). I haven't been put on Urso yet but I predict I will be soon.

[Shrimpette in reply to lauralocks123]

Hi Laura, do you know which 2 bloods are elevated? I don't think I've had a AST test. And how much they are elevated. Have you had an AMA test? I am waiting to see a hep this month. hope you're doing ok.

[lauralocks123 in reply to Shrimpette]

Hi there, I have 2 bloods that are slightly elevated ALT and ALP. Then I have one blood AST that is double what it should be. Waiting for a file up appointment. I was negative for ama I believe.