Qs for Jewerner - or anyone who knows about cholestasis (or itching in general)

ac4mvp · February 2012

When I was 38w3d, I got itchy feet, but I had been wearing tight boots and was on my feet for about 3 hours straight. When I was 38w5d, I got itchy hands in addition to itchy feet. I called the nurseline immediately when my hands got itchy because I was worried about cholestasis. They didn't think it was anything to be concerned about, but said that I should watch it. The itchiness was on my toes and between my fingers. As long as it wasn't my palms and soles of feet, they didn't think I needed to come in before my next appt.

I got a bit of a rash from scratching and I showed it to my MW at my appt a few days later. She also didn't think it was anything to be concerned about, but she requested a blood draw to test my liver functionality.

Since then, the rash/itching has gone to the top of my hands and my ankles.

I got the overall results back right away and all was within normal limits except for alkaline phosphatase. I called the nurseline again and asked about that being high. The nurse told me that in this late of a stage in pregnancy that is common.

Here are my questions for those who have had cholestasis or thought they may have had it:

What caused your actual diagnosis? Was it the bile salt tests?

Did you have itching anywhere else besides hands and feet? (I don't.)

Did you get a rash (red skin, tiny bumps) caused from scratching? Or did you have a rash before you started scratching? Or did you not get a rash at all?

Did you learn anything about the timing of the diagnosis? The reason why I ask is because I didn't get itchy until way past the recommended time to think about induction. So I didn't know if that had anything to do with maybe the fact that it's not cholestasis, just itching and a rash. I've asked about the timing, but haven't gotten an answer really.

Did you find that most of the day you were itchy? (I'm not - it seems to be just for a short period of time in the morning, a little bit in the afternoon, and before I go to bed. I've never woken up from scratching, nor have I not been able to sleep because of it. It really itches when I take my shoes off at the end of the day or when my hands and feet are warmer in general).

Basically, I'm hoping to just get a comparison of what your experience was like and to see if you got any more info than what I know of from perhaps meeting with specialists. It's such a rare condition that I think there isn't a lot of information out there. I'm obviously calling the nurseline when I have concerns, and am waiting for test results, but would like to hear real experiences.

Thanks in advance!

jewerner · February 2012

I'm so mad, I just typed a freakin essay back to you and it was erased lol Here we go again:

What caused your actual diagnosis? Was it the bile salt tests? *****100% bile salts, yes. My liver enzymes were sort of elevated, but not enough to do anything and theyre not really related. The bile acid levels are what you want. And ask for your level. 120+ is officially cholestasis... mine was 171. (apparently one of the highest on record, to give you a scale)

Did you have itching anywhere else besides hands and feet? (I don't.).****** For me it was exactly where you described to start, between my fingers and toes and slowly spread to EVERYWHERE. Then again, mine started around 32-33 weeks so it had plenty of time to brew before they could induce me.

Did you get a rash (red skin, tiny bumps) caused from scratching? Or did you have a rash before you started scratching? Or did you not get a rash at all?***** I got tiny red pimple looking bumps that wouldnt pop. I later learned it was from the bile trying to get out through my skin and they were like closed sores all over me.

Did you learn anything about the timing of the diagnosis? The reason why I ask is because I didn't get itchy until way past the recommended time to think about induction. So I didn't know if that had anything to do with maybe the fact that it's not cholestasis, just itching and a rash. I've asked about the timing, but haven't gotten an answer really. ***** Youre not getting answers because according to my peri, nobody really knows much about the disease yet. its still really new and rather than taking time to research, they just bet safe than sorry and induce asap because the risks are so high. I know that 38 weeks is the rule of thumb to not go past, but yours started itching so late I wonder if that changes things.

Did you find that most of the day you were itchy? (I'm not - it seems to be just for a short period of time in the morning, a little bit in the afternoon, and before I go to bed. I've never woken up from scratching, nor have I not been able to sleep because of it. It really itches when I take my shoes off at the end of the day or when my hands and feet are warmer in general). ****This is where I kind of doubt if you have it, but then again everyone doubted me and look where I ended up, so still absolutely push for your labs and trust your gut. every night I had to take 3 benedryl to force myself to pass out, and then woke up 3 hours later with bloody legs from scratching in my sleep. Id then take 2 more beendryl to make it through the rest of the night without crying, but there was no going back to sleep at that point. There was nothing to even take the edge off, it was miserable. So miserable it makes me doubt future pregnancies as I'm much more likely to get this again now. The only thing I could do was sit in an ice cold shower to try and numb my body and that only worked for 10 or so amazing minutes. It started around 8-9pm, and lasted until around 6am. It was still uncomfortable through the day, but not nearly as bad. I had extrememe levels so idk if my itching was extreme or not, but that was my expirience.

Also, my urine was sooo dark from the bile trying to get out through there, too, that everyone thought I was severely dehydrated. And my stool was a very light color, almost tan.

Good luck, and I hope you feel better!!

Lena122 · February 2012

I also had it and was diagnosed at my 37 week appointment. Luckily, I didn't start to feel symptoms until just before I hit 36 weeks so I didn't have to deal with it for too long.

What caused your actual diagnosis? Was it the bile salt tests? Yes. I described my symptoms to my OB at my 36 week appointment and she immediately mentioned cholestasis (which I suspected based on internet research) and sent me to get blood work done. At my 37 week appointment my OB said my bile levels were high and wanted to induce ASAP.

Did you get a rash (red skin, tiny bumps) caused from scratching? Or did you have a rash before you started scratching? Or did you not get a rash at all? I never got a rash at all.

Did you learn anything about the timing of the diagnosis? I can't really help you there. I do know I was lucky (and you are too if you have it) that it didn't start any earlier than it did.

Did you find that most of the day you were itchy? The itching came and went throughout the day but was definitely worst at night. I had to take benadryl to sleep and woke up crying more than once. I agree with jwerner that ice cold water was really the only thing that helped.

Definitely keep following up with your doc about this because if you do have it the risks are high now and you can safely be induced.

Want a personalized experience?

Qs for Jewerner - or anyone who knows about cholestasis (or itching in general)

Re: Qs for Jewerner - or anyone who knows about cholestasis (or itching in general)

Choose Another Board

Search Boards