Cholestasis- really anxious!!!

[MamaMolly]

Hi everyone,

I'm currently 37+3 and yesterday was diagnosed with cholestasis. I've been given urso and am going back in for more bloods to be taken on Friday, and a consultant appointment/scan on Monday. I'm just looking for anyone who's been through something similar recently and what your outcome was? So many posts I have read on this have indicated that most women who have this are induced at 37 weeks to prevent still birth - I really don't understand why I'm not being considered for this so far as I'm already past that date? I feel so anxious about the whole thing and would much rather have my baby a little early to ensure he gets here ok!! Any advice you can give would be amazing. X

Anyone?

I was diagnosed a similar time to you (my baby is almost 6 weeks old now) but was never offered medication or extra scans - they just booked me in at 38 weeks to be induced… she didn’t come until exactly 39 weeks as they were so busy (understaffed/emergencies). If you are concerned about your care plan please raise it with your consultant/community midwife. Sorry I can’t be more helpful.

@HR313 thanks very much for your reply. I called the hospital today to speak to a midwife about it all because I really don't understand what they are waiting for in terms of induction. I'll be 38 weeks on Saturday so I feel that the more time that goes, the more dangerous the situation becomes for my baby. So why take any risk?! So frustrating! At any point did they re-check your blood levels? Did they ever tell you what your levels were?

I was diagnosed with cholestasis at 37 weeks with my second. I was given a couple of extra scans plus they monitored my bloods every day until I reached 39 weeks when they offered an induction due to my ALT and bile levels being extremely high. I was booked in for 36 hours after but I went into labour naturally they next day and had a straightforward delivery

@Peanut91 thanks for your reply! Were you put on any medication while they were monitoring you? It's the waiting that's killing me. The itching isn't pleasant at all but I don't even care about that - I just want my baby to be ok and if that means getting him here a little earlier then I'm like let's just do it?? But so far I've not been told thats an option...

At 38 weeks I was put on Urso, antihistamines and given a cream to use which really helped the itching but my levels continued to rise which is why they decided to go with induction, which was then not needed anyway

I was diagnosed at 38+5 and he was born the next day, my waters were broken.

It could be that your levels are low - anything over 14 is cholestasis but perhaps as long as they are happy with the monitoring aspect so far they will then talk induction. I understand induction at 37wks is usually for off the bat high - so perhaps they are just monitoring for the minute and seeing how the levels go.

Cholestasis is mostly dangerous when it is untreated and unrecognised so the fact they’re aware is the biggest thing. Def ask for repeat bloods but if you’re on Urso it’s likely that will be helping. Stay calm - I know it’s really scary when the word stillbirth is used but focus on staying calm for you and baby and keeping an eye on movements.

I was diagnosed at 26 weeks. Anything under 40 is low risk, over 40 they err on the side of caution and do extra monitoring and induce to be on the safe side. Anything over 100 is dangerous and you would be induced as soon as possible but this is finely balanced with the baby not being too young to be delivered.

What are your levels? Why aren’t you having these convos with them when your bloods are being taken /being monitored? You can ask to talk to a dr so he/she can explain what cholestasis is, the risks & intervention at the different bile acid levels.

I was monitored every week. Mine started off 11, dropped to 6, then just went higher and higher until it reached 96. For other reasons, I delivered at 34 weeks so thankfully didn’t have to be induced /reach that level of concern.

@Peanut91 @Peanut91 this is exactly what I've been given too - the cream definitely helps with the itching and hopefully the urso will make a difference to my levels.

@tuxedocat you could be right about the levels - they haven't told me what my levels are atm so I feel I'm slightly in the dark about everything.

@Greenbks thanks for your reply. I phoned to speak to a doc/midwife to ask these questions. I was told they were too busy right now and no one was available to speak to me but someone would call me back at some point... so that's why I came on here in the mean time to see what others had experienced. I don't know what my levels are - when my midwife told me the results were she said she wasn't able to tell me what they were specifically and that an actual doctor would need to do that - which didn't fill me with confidence I must say...

Also, after a midwife called my GP for a prescription for urso, my GP refused to give it because she wanted it in writing as to why I was being given it... I called the hospital about this and they were outraged and told me just to come in and they would literally hand me over the medication. So far my experience of this has been extremely stressful to say the least when all I'm trying to do is keep my baby safe

@Peanut91 @Peanut91 this is exactly what I've been given too - the cream definitely helps with the itching and hopefully the urso will make a difference to my levels.

@tuxedocat you could be right about the levels - they haven't told me what my levels are atm so I feel I'm slightly in the dark about everything.

@Greenbks thanks for your reply. I phoned to speak to a doc/midwife to ask these questions. I was told they were too busy right now and no one was available to speak to me but someone would call me back at some point... so that's why I came on here in the mean time to see what others had experienced. I don't know what my levels are - when my midwife told me the results were she said she wasn't able to tell me what they were specifically and that an actual doctor would need to do that - which didn't fill me with confidence I must say...

Also, after a midwife called my GP for a prescription for urso, my GP refused to give it because she wanted it in writing as to why I was being given it... I called the hospital about this and they were outraged and told me just to come in and they would literally hand me over the medication. So far my experience of this has been extremely stressful to say the least when all I'm trying to do is keep my baby safe

Hi OP, have you found ICP Support yet? They are an excellent small charity who can provide lots of advice on your situation, including FAQs and a phone line. It might help to tide you over until you can talk to your consultant or midwife team www.icpsupport.org/abouticpdetail.shtml

As others said, the suggested medical pathway will vary depending on your specific results, and the stillbirth risk seems to be primarily once the bile acid levels are upwards of 100 rather than the diagnosis threshold of about 10-15, so they might be doing watch and wait. Are you able to discuss your specific results with your midwife or doctor?

Oh, sorry, messages crossed because I'm terribly slow at typing! I can see you're trying to get hold of someone.
In the meantime, I found putting on a T-shirt straight out of the washing machine damp from the spin cycle was MAGIC for the itching :)

@InstantUserNameJustAddWater thanks very much for sending that link - I've all a look at it just now!
I think they are probably waiting to monitor my levels to see whether they go up or not... It's the waiting that's the hardest part for me. And I think having read so many experiences of others who seem to have just been induced at 37 without any hesitation has made me question why i'm waiting around when I'm already passed that stage. I know these doctors and midwives are professionals and they wouldn't risk a baby's life but when you're dealing with your own baby's life it's difficult just to have blind faith in someone else's decision making I suppose! (Also judgment calls like the one my GP made about refusing to give me the prescription just alleviates this feeling of not always trusting others' decisions instead of my own gut instinct!)

I think it is level dependent. I was due an elective section anyway. My consultant was just monitoring my levels whilst they were a bit high, and then they shot up, so my section was brought forward. Its a close balance between baby being born early term (which isn't ideal either!) or the risks of the ICP.

If I were you I would speak to your midwife and and ask what the plan is- at what level would they induce you. If she doesn't know, she needs to speak with the consultant, and I would insist on this. Sorry you've had such a stressful time.

I had ICP in both my pregnancies- DD1 was born at 41 weeks, and DD2 at 37. Both perfectly healthy, my ICP with DD1 was pretty mild, and severe with DD2.

@Sipperskipper thanks for sharing your experience of this. You're right in that I need to really be told where my levels are at - it's the first question on my list to ask when they call On the nhs BadgerNotes app I can see that the tests they carried out are all listed, but every one of them has "not published" as their result - not exactly super helpful!

Thanks to everyone who has commented so far - I really appreciate all the advice!