obstetric Cholestasis OC/ICP

[Superscientist]

I'm just looking for others experience of OC/ICP.

I've just been diagnosed, my levels are currently in the "moderate" category so they are looking at induction around 38 weeks and I'm on weekly bloods to monitor my bile acid levels. I'm hoping they stay stable or drop. What did others levels do?

Also any tips for the itching? I can't take antihistamines which is annoying!

My itching started off not so bad and my doctor tested straight away and even though my levels weren't that high started me on Ursi Acid, then my levels just kept getting higher and higher

To be honest I didnt find anything to help the itching long term. Cool shower helped initially

How did you get on at your appointment yesterday @hoppy1990?

I've seen my consultant that manages my medication the stops me taking piriton and she has said I could take half a dose and that's been helping me get some sleep as I was waking 4 or 5 times a night and itching for half an hour plus. I'm at risk of getting mentally unwell if I don't get good sleep.
I've also now been prescribed udca after seeing a different obstetrician I only started it yesterday but I was itching less in the evening. My bile acid is up and down, last week it went up to 79 but dropped to 40 over the weekend. My ALT is more problematic as it's increasing every blood test and are now over 600 so they are sending me for a liver scan. The plan is still to induce at 38 weeks
Did anyone else have issues with liver function?

Sorry for the late reply! My appointment went ok thanks. They have told me to take piriton at night to make me drowsy and hopefully help when I wake up itching. Tbh, I don’t have trouble falling asleep, it’s just when I wake up in the night itching it’s bad - I tried the piriton for a couple of nights but it didn’t seem to help massively. Also don’t want to take it too late at night so I’m still drowsy for work in the morning!

They have also prescribed me another cooling cream - it’s the Dermacool cream but 1% menthol rather than 0.5% - I do find this helps! I’m slathering it on!

My bile acid levels had dropped from 41 to 19 but like you’ve said before, they can go up and down and they go off the peak level anyway.

They discussed induction with me and at the moment it would be around 38-39 weeks, but as soon as my levels go over 100 they’d look at inducing me.

I hope you’re doing ok and the itching isn’t too unbearable ❤️

I don’t think they tested my liver function on Friday, just my bile acid levels. My liver function a few weeks ago was ok. I’ll ask them at my next appointment about this though.

I'm finding with the piriton I still wake but where as before I would itching and itching and unable to stop I have a scratch and can then get back to sleep after a minute or two. I have found putting the radio on through headphones helps in the night too so I'm a bit distracted from the itching
Because of the interaction with my other medication I'm only on half a tablet, you could try that if you are worried about sedation in the morning for work or save it for the weekend? The Obstetrician suggested the liquid as being easier to do a half dose.

@Superscientisthow are you getting on with the UDCA? I have really struggled the last few days. Thursday night I had a max of 1 hour sleep due to the severity of the itching. I ended up getting up at 05:15, driving to my mum and dad’s and starting work at 06:00 to distract me! Had an awful day all yesterday with the itching too.

Realised baby hadn’t been moving as normal so went to triage to get checked - obviously as soon as I got there baby started having a party and all was fine! I think it was probably me being so out of routine that threw everything off.

I asked for Urso/UCDA but they said they no longer prescribe due to lack of evidence it works 😩

I'm not sure if it's making much difference. I'm slightly less itchy or at least when I'm itchy it doesn't spread everywhere but I had days like this before the udca. I was planning on not taking it for a day or two to see if it is making a difference.

I was in triage the other night too with suspected labour - turns out I have an irritable uterus which gives me contractions like pains. The registrar there said "why are you on UDCA, you know there's no evidence it does anything?" I replied the consultant thought it was worth trying as the itching was unbearable. He just kept repeating they could prescribe me some aqueous cream but aqueous cream makes me itchy without already being itchy!

I'm glad baby started having a good wiggle once you were on the monitor. I had the same with my daughter. I went in for reduced movements and she kicked the monitor as the midwife tried to attach me. It's always best to be seen though!

@Superscientist if easier you can buy menthol crystals over the counter at boots (or on Amazon) and mix a tiny amount into an emollient that is less irritating to your skin. Perhaps just plain olive oil . I used to slather myself in yoghurt with menthol crystals and lie on a towel but that is not for everyone . I was really desperate though and sleep deprived.

Thanks @Baconmanor , part of the issue I have is I haven't found a cream/emollient that doesn't make me itchy, it's a long standing issue I've had. I have some solid moisturisers that work when I have dry skin but I can't really mix anything in to them.
We are a dairy free house as my daughter has food allergies. I've been trying some of her creams but they haven't helped

I've got my next lot of bloods tomorrow. I think I need to talk to the midwife when she takes them as I've felt absolutely awful today. Had 2h naps and woke feeling just as tired, thankfully my partner and he's parents are around I'm not sure I would have had the energy to make myself food. I've also realised I've got put on any weight in about 6 weeks, and am only gained about 7kg in total which I'm not sure if should be worried about.

Hey @Superscientist 🙂
how are you doing? How are this weeks bloods for you?
I’ve just had mine back and the ALT is now over 500…. No issue with bile acids etc, and am a “puzzle” to consultants and midwives apparently. Had it in last pregnancy and was induced at 37 weeks which I desperately wanted to avoid but feel it’s going the same way 😖

Can I ask why it’s a 38 weeks which induction for you (currently?) and not 37, and if your bloods have gone up each week? Mine got to over 1000 last time but I still felt fine which was odd.

I’m just freaking out all over again to be honest and so upset this is happening again.

No real suggestions for the itching I’m afraid, must be awful 😢 although have you tried oat baths? A big handful of dried oats tied up in tights and used like a bath teabag?! With tepid water.

Hey, I've just had this week's bloods and they are looking stable but they didn't give me my levels. My alts last week were 650 they will retest next week
The guidelines my hospital follow is induction at 38-39 weeks for moderate icp and 35 weeks for severe. As my bile acid levels have stayed under 100 I'm still in the moderate category, the liver function results don't change their management of pregnancy

I've got a liver scan booked to look at other liver issues. When my consultant saw my last results which had only slightly raised bile acids but high alts she said it could be gallstones instead. I told her the previous levels had been higher so she went back to ICP. The message I got this week was looks like icp so I assume my bile levels are back in the moderate range

The itching has reduced quite a lot. I'm itchy but the hours of scratching has stopped and it's not waking me as much. This is without the piriton and UDCA.

I am utterly and completely knackered though. Just going from bed to the sofa today has taken all of my energy. Just sitting up is tiring. The person on the phone said to speak to triage if worried but not sure when to be worried. I've also realised that I haven't put on any weight in about 6 weeks I'm not sure if this is something to be concerned about either..

Thanks for all that, I’m so sorry you’ve had such a journey with it all so far…. So frustrating. Glad your itching has subsided though and hope it continues that way!

my first pregnancy raised LFTs were due to gallstones, so they’re right in giving you a liver scan. I had my gallbladder removed after birth last time, so can’t be that this time. I had a liver scan a few weeks ago and all clear. Hope yours is too (or gives an answer!).

My bile acids have remained 8 and lower so far… so nothing like ICP (on paper, anyway). But they are still looking to induce at 37 weeks again at this rate even though they don’t know why 😖

how are your full blood counts, regarding tiredness? Iron and ferritin levels etc? It’s knackering being pregnant anyway, but dodgy bloods can deffo account for it feeling worse!!

Thanks, the woman I spoke to this morning said my iron levels were normal.

I don't know exactly how it works but you can still get gallstones without a gallbladder! My sister had hers removed as a teenager but still has to be careful about risks for gallstones

Can you ask them their rationale for induction at 37 weeks?

How are you getting on @CustardCream31 ?

I ended up in hospital with the fatigue and was really struggling this brought my induction discussion forward from mid 38 weeks to mid 37 weeks. They ran a bunch of tests but couldn't find any definitive cause but my liver function was a mess and I had low platelets. They were keeping an eye out for hellp on the plus side my bile acids stabilise back on UDCA around 20 and it gave me minimal itching. This was until last week at when they shot back up and I was called in for an induction. I had a sweep on Saturday at 36+6 and they induced me the next day at 37+0 he arrived the next day - 20h after induction was started

Awww. Congratulations.. I haven't posted but I've been following your story.. I'm glad you have delivered safely..
And having wonderful snuggles with your little boy..

@Superscientist oh my gosh, congratulations!!!! So pleased he arrived safe and well, and you don’t have to worry about bloods etc anymore! Hope you’re managing to rest up when possible. It’s a whirlwind!

well I’ve now been diagnosed with ICP… my bile acids went up to 40 last week, but then came down to 11 2 days later, and then 20 a day after that! Confusing. My ALT is over 700 now.

more bloods and consultant visit tomorrow. I’m only 33 weeks currently so am feeling very worried and stressed…. There was a risk of her needing to come this week, but taking it every few days at a time. Hoping to make it to 36 weeks….

feeling tired and on and off nausea now. Have been put on Urso pills.

I'm slowly adjusting to not living day by day! I hope you get to 36 weeks that was my goal. It felt for a while like I wouldn't get there especially when I started having contractions at 33 weeks but day by day we got there and I hope you get there too.

I have a scan on my liver on Saturday that was arranged in pregnancy so I am hoping they might give me a bit more insight. The midwives will be repeating my bloods after 2 weeks and then the GP after 6 weeks and then hopefully it will be the end of this horrid journey. We had no plans for number 3 but this month has definitely solidified that!

The fatigue became totally unbearable for me. I slept through most of my labour even though I only had gas and air. I had to stop driving and couldn't be left alone with my daughter as I was barely awake. They couldn't find a reason but the most likely cause is a consequence of my liver function and I possibly had some hemolysis (break down for red blood cells) and that could trigger fatigue. The liver stuff was reducing my appetite and the increased fatigue meant I was struggling to eat. I think this probably started before the other liver symptoms as I didn't gain any weight from mid July and in the last weeks I lost a kilo. I'm 3 days post birth now and already the same weight as my book weight. I stabilise my weight by ditching healthy eating and going for high calories foods just to try to give my body what it needed.
I developed worse acid reflux in the days before I was induced and that made me sick a few times. I did read a little that the raised bile acids can trigger reflux/sickness. It might be worth seeing is some reflux treatments could help?

Do look after yourself my body took a huge battering in the last weeks of pregnancy and it made the whole thing so much harder, I don't think I would have had the strength to cope with labour had I not been induced when I was. Baby doesn't seem to have suffered and only weighed 1oz less than my daughter despite being born 2 weeks earlier!