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July 2019 Moms
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Cholestasis again?

mizzmegmizzmeg member
in July 2019 Moms
Any other moms dealing with cholestasis a second time? My hands and feet are becoming unbearably itchy. I know they said the chances of having it with every pregnancy is high but I'm concerned that its in my head! Nothing is helping the itching and its no fun! 
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Re: Cholestasis again?

  • runsoncoffeerunsoncoffee member
    Hi there! I am on my third ICP pregnancy. With my second and third I was diagnosed very early (end of first/beginning of second trimesters) and I also thought the itching was in my head. I would for sure ask your doctor to run the bile acid test, especially given your history! I'm sorry about the itching... it's awful!! Feel free to message me if you need someone to vent to!
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  • mizzmegmizzmeg member
    @ccmama3 the worst is at night when I’m trying to sleep but it keeps me up. 😔 I’ll ask for the second test this week since I have a baseline from the end of the first trimester. I hate that we have this to deal with on top of everyday pregnancy woes, but happy to know im not alone! 
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  • runsoncoffeerunsoncoffee member
    @mizzmeg ugh yes, that's when it's the worst for me too! It does sound like its probably cholestasis again to me. I am pretty lucky that the ursodiol helps relieve my symptoms a lot, maybe the same will be true for you if you are also diagnosed! I don't wish it on anyone, but I agree, it is nice to know we aren't alone!!
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  • mizzmegmizzmeg member
    @ccmama3 so I had my test done and the results came back at 16 umol/L. The doctor said it’s normal however all the medical journals and other providers I spoke with agree that it is ICP. Looks like I’ve got it again and I have to put up a fight. 
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  • runsoncoffeerunsoncoffee member
    @mizzmeg are you in the ICPcare fb group? That plus their website is where I got most of my info. I also had to put up a fight and switched MFM providers during my second pregnancy. The one I ended up at actually had printouts ready for me at my first appt from the ICPcare website. My initial levels this time were only 11 and I still pushed to be diagnosed, even though it's on the low end, given my history and symptoms. They are at 18 now. Definitely advocate for yourself! The ICPcare website has printouts you can give to your doctor/provider. Feel free to PM me!
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  • julybaybayjulybaybay member
    I have been recently experiencing itchy hands and feet. I will be 37 weeks this week. I just googled and learned of possible cholestasis. I am understandably freaking out. I have an appointment 3 days from now, but I am scared to wait that long, hearing about you all having to fight for a proper diagnosis. I am hoping this is just dry skin or nerve sensations related to the weight gain/mild carpel tunnel, but I don't want to mess around. Any advice?
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  • mamanbebemamanbebe member
    @julybaybay If your OB dismisses you, you can always ask for a referral to a perinatologist/maternal-fetal medicine specialist for a second opinion. 

    I had psoriasis on my hands during my last pregnancy, but it was visually obvious with cracked, painful skin. I also had bad carpal tunnel but it didn't cause any itchiness, only swelling and pain. 
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  • mizzmegmizzmeg member
    @julybaybay Ask for bloodwork to rule it out. You want to get the pregnancy bile acid test done. It takes a few days to have results, so you may not get it right away. If anything call your doctor today and ask to put in the order so you can have results by the end of the week. If your doctor is well versed in Cholestasis you should’ve have much to worry about. Do not let them brush off your symptoms. If they tell you it’s normal, go to the ER for itching. They will run the bloodwork too. 

    I also suggest using icpcare.org as a great resource for information for both you and doctor. I finally got my diagnosis and baby girl will be here next week at 37 weeks. 
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  • mizzmegmizzmeg member
    Adding since I can’t edit: this itch is a distinguishing itch. It’s primarily on your hands and feet and NOTHING can get scratch the itch. It doesn’t have to be your hands and feet though. I have it on my arms, legs, and head now. There is no rash. A rash can be formed secondary to the itch (when I scratch too much I get a rash.) Good luck momma. Keep us updated! 

    And PS: have your hospital bags ready the day after the blood test. If you do have it they will induce ASAP after 37 weeks. My first I was diagnosed at 37w5D and was induced that night! 
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  • julybaybayjulybaybay member
    All so very helpful, thank you! I called this morning and am waiting for a call back to see if they will order the test. Based on what you all describe, my itch does go away with scratching, and if I put lotion on it also stops for awhile. I know only the test can tell, but I am just trying to put my mind at ease a little. I definitely feel stressed being that I'll hit 37 weeks on Thursday and didn't expect to have all this last minute drama and worry! Hoping for the best, thanks for your support and well wishes. Wish this happened sooner so I would have known farther in advance and not racing against the clock to get results, etc. 
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  • julybaybayjulybaybay member
    UPDATE: Doctor ordered the bile acid blood test, waiting to get results back tomorrow or Friday. Said if it is positive, we will induce within 12-24 hours of knowing, since I'm at 37 weeks. If it is negative, another test next week to see if the levels increase or not.  :/
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  • julybaybayjulybaybay member
    Results came back still in the normal range (7.9/10) but they will retest next week to see if they elevate. I have a question though, because there is a 2-3 delay in getting the results, should I ask to be retested earlier than next Tuesday? I just feel like if I was a 7.9 as of 2 days ago, what if I am at a 10 today, and then increase over the limit by the next test on Tuesday (which we won't get back until Thursday) which will make it 10 full days between tests. I think I am being paranoid, but the fact that I'm 37 weeks today and was left to sound the alarm of itchy hands and feet on my own, I feel like they should be testing closer together. Those with Cholestasis, does this make sense to you? 
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  • mizzmegmizzmeg member
    Ask them to put the tests in. The rule of thumb is if you are symptomatic, you are to be tested. Bile acids fluctuate all over. I started at 16, went to 10, then on meds went to 15. I am waiting for my last results to come back but my little itchy baby arrived via RCS 6/19. I was itching so bad that I was tearing skin off. If you are willing for peace of mind, ask for Urso. It helped keep itching down for a few weeks (until the end).

    I feel you on having to sound the alarm yourself. My doctors didn’t listen at first. I had to provide the research and tests to get a proper diagnosis at the end, 35+6 I walked into my office crying. They decided not to wait. You will always be your best advocate. 

    Finally, where are your tests done? Quest? Labcorp? Etc? Did they also ask for hepatic function test? What were your ALTs and ASTs? 


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  • julybaybayjulybaybay member
    Thank you, this is all so helpful! I asked the doctor if we need to test sooner and she said based on all my levels that she felt waiting a couple more days was perfectly safe. She said if my symptoms increased or changed dramatically that I should come in right away to test, but that hasn't happened. Just had the second blood draw today, will find out Thursday what the verdict is. Itchiness has decreased, if not disappeared for now. 
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  • knottieeeca93d3bc8a7808knottieeeca93d3bc8a7808 Just Joined
    Hi I have question if you don’t mind. I plan on Calling my OB on Monday. But I’m only 7 weeks along and I just started itching everywhere this weekend. I am terrified to have cholestastis the entire pregnancy. With all the risks. How did your pregnancies go finding out very early that you had it?
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