Cholestatis - conflicting information

[AKP79]

I had to go into hospital yesterday for blood tests to check for cholestatis. I had spoken to my midwife earlier in the day and explained that for the last few days I'd been having these symptoms:

• Really itchy soles of feet and toes
• diarrhoea
• tiredness

And yesterday the itching was happening between my fingers and spreading to my palms.

My midwife arranged for me to get bloods taken at hosp and when I asked about the bile markers she told me that 4 was normal and 14 and over was an issue. She also said that it was likely that if it was between 9-14 I would need to be tested every 2 weeks.

My bile result came back as 9. I asked if I'd need repeat tests and the midwife at the hospital looked confused and said no everything's fine.

I'm now really confused myself! I've left a message for my midwife but wondered if anyone else had any experience of this?

Thanks

Im no help really, but I had OC and I thought under 14 was within normal range, my levels rose quickly so if they do another blood test I imagine it's to see if it's risen.. But with the NHS they'd probably wait to see if your symptoms persist.. But compared to how high the bile levels can get with OC even 14 seems low(my last test before induction was 111). My symptoms were itching everywhere mainly at night, dark urine and light coloured stools. Good luck with your pregnancy x

Thank you @Savingtheworldb4bedtime for your reply. When they took my blood the midwife was convinced it was going to come back positive based on the extent of my itching, so I was surprised it was negative.

A different midwife gave me the results and she did indeed say to just monitor my symptoms and return if they persist.

The itching started on my ankles and has since spread up my legs, round to the underside of my feet and also on my hands. And like you say it seems to come on at night - it's intolerable.

A reading of 111 does put my 9 into perspective so thank you for sharing that info. Hope everything was well with you and baby.

9 is well within the normal range so I don't think that there would be a need to keep repeating it. If your symptoms continue or get worse then I think they would need to repeat them but otherwise I suspect it's the first midwife who was wrong for suggesting they would keep repeating them.
They don't look at bile markers in isolation but alongside other tests such as liver function and platelets, I am assuming that all of these were normal as well?

Yes - they were all normal too.

That's a relief to know. After a number of losses and a terrible time with my first born I'm super paranoid this pregnancy.

Hey, I won’t bore you with the details from my first pregnancy but please ask (insist!!!) they check them again in 3/4 weeks time anyway. I had mine checked early doors and they were intolerance, I then accepted everything that came after that (symptoms wise) as “it’s fine, you’ve got to man up and suck up just being preggers). By the time I had my baby the levels were so high the team were horrified and with hindsight we realise how lucky we were our daughter is perfectly fine. It took nearly 18 months to be free of Liver specialists! If they check and it’s fine, all you’ve lost is the 30 mins waiting in the blood department. I’m sure it will be fine and I really don’t want to alarm anyone but please ask them to check again in a few weeks, just for peace of mind. Xxx

I also agree to push for another test. My bile acids were never high, but my liver enzymes were. Consultant said I didn’t have OC, but post birth they said I did (after difficult labour and EMCS- DD perfectly healthy though).

My liver is only just returning to normal nearly one year on. I would insist they recheck, especially if your symptoms are not improving.

Thanks both. I've got a really good relationship with my community midwife, so I have the confidence to push it with her if my symptoms persist.

Really sorry to hear you both had such shitty situations, but great that everything worked out ok.

My son was born with meningitis and I nearly lost him so I will definitely be pushing this if needed.

Great to hear to have a good relationship with you Midwife! I never saw the same one twice! Luckily I’m with a different team this time and they’ve been on the ball with it so far, I’m just crossing my fingers I’m one of the lucky ones who doesn’t get it again!

Sounds terrifying with your little boy! Fingers crossed it’s straight forward for you this time. Xx

My bile acids were in the 140s and not responding to treatment when my DD was born. Luckily she was fine. My itching started just after my 34 week appointment and I was nearly mad with the constant itching by my 37 week appointment. I didn't call the midwife in between times because I had had identical symptoms with my previous pregnancy and been told I was fine. I subsequently found out they did liver function but not bile salts in that pregnancy and I am so thankful that DS was born healthy at term.

DD was born 4 days after my IC diagnosis when they couldn't get my numbers down. The itching was gone within 48 hours. Luckily liver was normal at 6 week check but no more babies and no hormonal contraceptives for me.

At 9 I don't think your baby will be in danger but don't be afraid to request a retest (unlike me in my earlier pregnancy) if the itching continues.

The advice on the icp support website is that icp does not always show up on the blood test at first so you need to have another test if your symptoms persist.

I have OC at the moment (2nd time round for me 😔) 9 is a normal reading for bile acids but they should also be looking at your liver function tests. My itching is always worse at night and mostly on my hands and bump, not really had any other symptoms. I'd say if your still itching in a week go and ask to be retested as levels can jump quite quickly. Each case is different obviously and it isn't a nice thing to have but if they do diagnose you, you'll be well looked after. I'm at the hospital every week for bloods and monitoring, have a consultants appointment next week, had a liver scan to check there was no problems there and I will be having a growth scan.

I'm also on tablets to help get my levels under control and they seem to have a small affect as they have started to creep down. I'll be induced at 37 weeks as I was last time, but I've personally had no adverse problems long term and my 1st DD was born healthy and happy.

Good luck and hope your levels stay down!

Just an update really. I've just read through my notes and although they'e said my bile was 9, it states it was 11 in the notes.

My midwife phoned me the other evening and has said that she's basically going to ignore the hospital and test my blood every two weeks anyway. So I feel really reassured by this.

Thanks again for all the feedback!