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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Intrahepatic cholestasis ICP / obstetric cholestasis

35 replies

NotLongNow12 · 21/06/2022 18:21

Hello

I started with itching a couple of days ago.
Called the midwife who said to go to hospital for blood tests.
The results have come back to say my bile levels are 22.

I'm booked in for a c section in 3 weeks when I will be 39+4.
Has anyone had this and what was the course of action? I.e was your c section brought forward etc?

I'm going back in tomorrow for another blood test. And they're booking me for a liver scan for next week.

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Original poster
NotLongNow12 · 21/06/2022 19:42

Bump

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charliewww · 21/06/2022 20:03

Hi, my dd is 8 now so I had her a while ago but I had this same issue. I was induced at 37 weeks as my levels had gone really high.

If it's been identified and you're being monitored then that's great. I'm glad I had googled itching in pregnancy otherwise I'd not have known! The funny thing is that as soon as you've given birth you're fine again.

Wishing you good luck Smile

Stella212 · 21/06/2022 20:12

Hiya :) I was diagnosed with OC at 38 weeks back in October. I didn't need a c-section but I was told they would induce me at exactly 40 weeks.

My initial bile acid levels were 22 and despite being prescribed Urso (which I presume you also have?) my levels increased to 26 about a week later.

I was eventually induced at 39+3 because they had a slot available and I was concerned about movements. Although I'll stress that I had an anterior placenta and so movements were an issue for me throughout!

I was really concerned about the OC when first diagnosed but they keep such a close eye on you that as the days went by I became much calmer about it. The midwives kept telling me that they only become seriously concerned with bile levels over 100!

Wishing you all the best with the birth xx

Original poster
NotLongNow12 · 21/06/2022 20:16

@charliewww
Can you remember what your levels were?
I'm having mine checked again tomorrow but at the moment they're 22. They said they would bring c section forward if they get to 100.

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Original poster
NotLongNow12 · 21/06/2022 20:17

@charliewww
And yes I've heard that! That after the baby is born it all settles down again.
Thank you for your well wishes. 🙂

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Original poster
NotLongNow12 · 21/06/2022 20:20

@Stella212
Thank you
That must have been worrying with the reduced movements. Especially with an anterior placenta as I know it's so much harder to feel the baby move then.
Yes they've told me they worry when it gets to 100. I'm not sure how quickly they can increase. I'll know more in a couple of days after these next blood tests.

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QueenMabby · 21/06/2022 20:36

DD is 13. I had OC from about 32 weeks. My hospital had a policy of inducing at around 37 weeks for women with OC. I had a planned c-section at 37+3 (I had severe PGP and was on crutches and my consultant didn't want me to labour).

It is pretty much cured by birth although I was told I was contra-indicated for the pill as a result but my gynae was happy to prescribe it.

Original poster
NotLongNow12 · 21/06/2022 21:27

@QueenMabby
Gosh that must have been awful. I'm glad everything worked out ok for you.
I'm wondering if they're going to look at moving my c section forward. I really don't want to take any risks. I'm trying not to read the awful stories online.

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OutofControl3 · 21/06/2022 21:32

I had this in my last pregnancy but it got missed and had a worrying phonecall at night 40 weeks pg saying I need to go hospital. Induced tha next day it goes as soon as birth just monitored. I gave birth naturally too. I wouldn't read the horror story's or compare any births tbh as no two are the sane. Gold luck x

Original poster
NotLongNow12 · 21/06/2022 22:08

@OutofControl3
That must have been worrying for you getting that call.
Yes I'm refraining from reading the awful stories. I've seen a few pop up online and have skipped past them.

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edibletreats · 22/06/2022 10:33

Hiya,

I had this in my last pregnancy. Was diagnosed at 35 weeks and induced at 38 which resulted in a c section. They offered me increased monitoring or induction and I opted for the latter as I could just imagine I'd spend a lot of time in and out of the hosp worried about movements.

The itching/burning stops as soon as you have given birth which is such a relief!

I am currently 10 wks pregnant and have been classified high risk as the OC might come back. Has anybody got any experience of OC in subsequent pregnancies? I think if I was to develop it again I would go straight for elcs.

OutofControl3 · 22/06/2022 11:32

@edibletreats I had oc in my 3rd pregnancy but not in my first two. I'm pregnant again and I'm under a consultant incase it happens in this pregnancy but midwife says its a chance it could happen but then again a chance it couldn't so I would be interested if it happened in other pregnancys too after having it in pregnancy before. I find it really odd that I dint have it in my first 2 pregnancies but then occurred in my 3rd. I think there is some meds you can take if caught early but I'm not clued up entirely as I only knew about the condition 1 day before induced.

GreenRainbowSun · 22/06/2022 11:45

It has a estimated re-occurrence rate of 80% so more likely than not to happen in subsequent pregnancies.
I had it before - don't think I am classified as 'high risk' as such am still in midwife led care this time at least until I get it which I am hoping not to (had a brief chat with a consultant in addition to midwife about it but that's all and the midwife has done blood tests).

If your levels stay around 22 then 39 weeks is reasonable- you should get regular blood tests to check it doesn't spike. Over 100 research shows there is an increased risk of stillbirth which is why they worry (although most babies are still fine)- under 100 you are at the same statistical risk for stillbirth as any other women.

The charity ICP Support has really useful information.

Original poster
NotLongNow12 · 22/06/2022 19:01

I've had another blood test today. They said they will give me the results next week when I go back. They said they'll only phone me with the results if they have risen quite high.

I asked what are the chances of the baby coming early because of this as I have been reading online lots of stories of where this has happened but she just said:

"how do I know? How does anyone know if a baby will come early? You're almost 37 weeks so it doesn't matter anyway"

which wasn't all that helpful as I'm really anxious about the harm this could cause to the baby. Obviously the stillbirth stories have terrified me.

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OutofControl3 · 22/06/2022 19:21

@NotLongNow12 aw that wasn't very helpful from her was it, when you clearly worried and need a bit of reassurance. The only thing I can say is worrying isn't going to help you at this stage try to take 1 day at a time put the phone down stop googling. You will be looked after when the time comes if it's In a few days or a few weeks. Do some things to occupy you during the day treat yourself to some good snacks and get into a programme at night. Nothing worse then worrying about something that is unknown because you can't control it. Please try to rest as when that little baby comes your really going to wish you didn't spend time worrying x hope I ha e helped you feel a little better ❤️

Original poster
NotLongNow12 · 22/06/2022 19:28

@OutofControl3
Thank you.
I really want to try and not stress.
I do want to take my mind off it but I just keep wondering is the baby ok in there?
My partner is really worried too and has been upset.
We've had several losses over the years and have had so much fertility treatment (IUI & IVF).
I'd rather they bring my c section forward than take any risks.

I'm still going to call them tomorrow to ask for the results, even though the midwife told me not to.
But I'd be wondering all week what they are otherwise, and I'm not due back there until next Thursday.

I'm going to try and relax tonight.
Watch something on tv or read (not Google...!) and can hopefully switch off a bit. Xx

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OutofControl3 · 22/06/2022 22:22

@NotLongNow12 That's totally understandable sorry to hear you have been through a lot to get where you are now the end is near happy thoughts. Have you found out if it's a boy or girl? Get thinking about possible names, have some fun be positive!

DeFuckingLightful · 22/06/2022 23:07

When you ask for your results ask what the guidelines/policy is for your hospital for women with cholestasis, if they are no help, ask to speak to a consultant. I’ve had cholestasis 3 x and was always induced at 37 weeks, not sure if that’s now changed but if it was me I’d deffo be asking for the safety of baby! All the best x

nettytree · 22/06/2022 23:19

I had this for both my pregnancies. Diagnosed at around 16 weeks for both. From 22 weeks I had twice weekly bloods and weekly growth scans. Induced at 36 weeks.I had to take a very high dose of a medication used for gout, Urso something. My alt level for my first was 1450, the average is 41. Not sure of levels for second.

Original poster
NotLongNow12 · 23/06/2022 04:02

@nettytree
Gosh that is high.
I haven't had a liver scan yet as they said that will possibly be next week. They haven't prescribed any medication. They've just said to take an antihistamine for the itching.

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Original poster
NotLongNow12 · 23/06/2022 04:04

@DeFuckingLightful
I will ask again when I call back as the midwife I spoke to yesterday wasn't helpful at all.
They said the other day they would only look at next steps in terms of bringing the c section forward if my levels raised to over 100. Other than that they will let me go to my c section date where I'll be 39+4.

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GreenRainbowSun · 23/06/2022 08:30

@DeFuckingLightful
There is recent research that shows waiting until 39 weeks safe unless bile acids go over 100 so it has changed in the last few years.
That's not to say op shouldn't ask for more information and to talk through options though.

Op - i strongly recommend the charity ICP Support for advice - they have a website, Facebook support group and I think a phone line too.

Original poster
NotLongNow12 · 23/06/2022 20:23

@GreenRainbowSun
Thank you. Yes I did join that group on FB and I've looked at the website online too.

But there is some good news. I phoned the hospital earlier to ask for my results and they said the bile levels have reduced to 10!
Not sure how or why.....

I'll be going back next week for more blood tests but I just feel relieved they've reduced again!

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Original poster
NotLongNow12 · 24/06/2022 23:47

Has anyone had it where their results have gone up and down?
Mine had gone up to 22, then reduced to 10. But I've been itching again all day so I'm not sure if they would have gone up again?
My next blood test is due for next Thursday and a liver scan the following week.

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OutofControl3 · 27/06/2022 07:42

@NotLongNow12 hey just checking in on how you are?