pea / 6 posts
Hi Ladies! Long time lurker - first time poster. I guess this is a bit of a threadjack, but it seemed like the most appropriate place for my question.
I am hoping to get a little advice on ICP. I have had mild, intermittent itching for about 6 weeks - sometimes on feet and hands, sometimes all over - but again, mild and intermittent.
Just to be cautious I asked to be tested for ICP. The first two tests my LFTs were normal and total bile acids were 10. This last time my LFTs are still normal, but the total bile acid level is 15. My question is if I was supposed to fast for these tests? I didn't fast for any of them and was wondering if that would make a difference in the levels.
My doctor and I are hesitant to officially diagnose with ICP because the itching is so mild. He has suggested a fasting level be taken Monday morning. Also, he said that they typically don't diagnose ICP unless total bile acid levels are over 19 as that is the reference range the lab uses.
Everything I have read says that anything above 10 is indicative of ICP. He did some more research and agrees that 10 is the typical cut-off and is now talking about induction depending on how the fasting level turns out. If the fasting level is below 10 does that mean I don't have ICP? Any advice / thoughts on this would be much appreciated. I am starting to get very nervous and can't seem to find definitive answers on fasting vs. non-fasting. Thanks!
persimmon / 1363 posts
@pinkboots: the bile acid test is supposed to be fasting. How far along are you? If you're bumping up on the 37 week mark, and experiencing itching, and having bile acid tests (fasting or not) over the cut-off, I would want to be induced, just because it's such a serious risk. If you still have time, I would see where your levels are at on Monday with a fasting total acid bile test and make your decisions from there based on all the information.
@Rockies11: Thanks for the reply! I am just over 36 wks - definitely close to the induction timeframe. I think that's why I'm getting so nervous and unsure about what is the right course of action.
I'm sure my doctor would induce me if I asked, but again, we are both a little surprised that the bile acids are elevated because the itching is mild and not every day. But I certainly don't want to take any chances, so if ICP is indicated regardless of fasting or not then I will ask for the induction.
@pinkboots: from my understanding of choleostasis, the symptoms can range from mild itching to crazy, scratch your skin off itching. The ICP Care/itchy moms FB group is a really great resource - just reading entries there can give you an idea of the range of symptoms.
@Rockies11: Thanks so much for info! I will check out the FB group.
Anyone else have any experiences / thoughts on fasting vs. non-fasting, reference ranges, etc.?
kiwi / 549 posts
@pinkboots: it's actually incorrect that you have to be fasting. There is not an absolute decision on the matter. I never fast for my tests.
The icpcare.org website has tons of medical documents on diagnosis.
Bile acid levels are NOT connected to itch intensity. My bile acids are through the roof and I'm hardly itchy at all. Granted I am on Ursodiol and being treated.
Your levels are mild, but I would take one last fasting test just to see, and still push for inducing before 38 weeks.
I have mentioned earlier I am part of the icpcare foundation, and help run the major Facebook support group.
There are lot of misunderstandings about diagnosis. 10 + is ICP. 19 is used at some labs but that it's for NON pregnant testing. When you are pregnant the threshold becomes 10. Unfortunately there's only a few labs that test bile acids. I'm fortunate to have a less common lab test mine, and they have the updated reference of 10 and it shows 10 being the cutoff in my labwork.
There are 2-3 articles on the icpcare.com website that discuss 10 as the cutoff. If you click on the "resources" tab and then there is a medical reference and documents option.
Please please push your doctor. Think of it like this, if you went into labor on your own after 37 weeks, nobody would stop it. So while an induction scares people, ICP is not soemthing to be tampered with. It's really unfortunate the lack of awareness for proper treatment and diagnosis!
Best of luck!
honeydew / 7463 posts
@pinkboots: Ditto everything @BabyPenguinXO: said. Don't need to fast. The diagnosis for ICP in pregnancy is definitely 10+. I was only at an 11 at 35 weeks and they didn't hesitate to schedule me for induction at 37+2.
I too had only intermittent itching, sometimes hand/wrist/feet and sometimes everywhere. I told my OBGYN just as a precaution, I was sure it would be fine, so I was surprised when she called me (while I was on vacation at 36+5) and told me to cut my trip short. Fortunately i was only an hour and a half away.
It's scary, and not ideal, but it's worth it! I'll never know what the alternative outcome could have been, but I'd rather be safe than sorry.
@BabyPenguinXO: @SweetiePie: @Rockies11: Thank you so much for your experiences and knowledge! I guess we'll just see how the blood work goes on Monday and evaluate from there. However, it seems that my non-fasting level of 15 is reason for an induction. I have an appointment with my OB on Tuesday. Do you think I should ask for medication to take until my induction date?
@pinkboots: I would ask for medicine yes. Ursodiol is the best and most efficient, again, articles about this and studies are on the website. The problem is starting the meds before your fasting blood, is that the urso could potentially effect those results! So you may want to discuss with your doctor that. My recommendation would be to start urso ASAP because I know that you should be diagnosed based on your current values. However, your doctor might not agree, and therefor starting urso before your fasting blood draw could effect your numbers, and therefore effect your ability to argue with your doctor that you need to be induced.
So it's a tricky situation while I'm not a doctor, I have 20 days left with my current ICP baby and I had one ICP baby already. I consider myself very well informed due to being part of the ICP care foundation and advising women on the support group page mentioned!
So my recommendation would be to start Ursodiol ASAP but also tell your doctor that regardless of the fasting results, you are very set on having baby before 38 weeks. There is also an ICP delivery flow chart that is available on the website, that outlines when to deliver. There is no evidence that the test should be done fasting so your doctor doesn't have ground to stand on. I've also recently heard that doctors are claiming recent studies show that ICP risks are overstated, again, a very faulty study and inaccurate so don't trust that! The ICP Founder is Donna Benavides, and her and the other major participant Hilary Boyer are constantly in touch with the world leading ICP reachers.
Okay I'm gonna stop my babbling! Haha I have obviously a soft spot for this condition because of my two ICP babies. I have a very severe and special case because mine is caused by an underlying liver issue. My son was a 34 weeker and my daughter is coming at 35+6, because my doctors are being super cautious.
@BabyPenguinXO: Thank you for the insights and recommendations! I really appreciate your response. I just received the test results on Friday evening, and am now trying to formulate a strategy for moving forward safely in the next week. You have been immensely helpful!
Bumping for reference
I saw that @BabyPenguinXO: bumped this thread, and I thought I should post an update!
I had my fasting bile acid levels drawn on Monday and went in for my regular OB appointment on Tuesday. The OB had consulted with the other physicians in the practice as well as a high-risk OB, and they all determined that I should be induced. Interestingly, they were all more concerned that the bile acid levels were rising rather than the actual number itself. The OB did say though that if the fasting level comes back below 10 they might reconsider the induction.
So, I left the appointment feeling pretty certain that I would be induced that week. The fasting bile acid levels came back Wednesday morning at an 11, and I got the call later that afternoon to arrive at midnight to start my induction!
I arrived at the hospital around midnight, they started the Cervadil immediately, broke my water around 8 am, and my baby girl was born just before 11 am! It was a very fast, complication-free induction. She is now almost 7 weeks old and doing wonderfully!
Thank you to all who offered their experiences and advice! I hope this update might help someone else looking for more information!
@pinkboots: thanks for the update!
We ended up delivering my daughter a week earlier then planned. She came at 35+1 because of decreased movement and her heart arrythmia was much worse. It's a beign one that clears at birth majority of the time but it made me extremely uncomfortable that it was so much worse then 4 days prior when it started.
Interestingly enough, she had to have an EKG before discharge. It was irregular which called for an echo on her heart. Those results were irregular as well and called for a follow up in a week.
At that time everything checked out and they said it appeared to be stress related. I had a repeat c section so I didn't labor at all, which means she was likely stressed in the womb and not showing signs.
I'm so glad I listened to my instinct that night to go in and be monitored, and that we delivered her earlier.
She will be 6 weeks on Sunday! I can hardly stand it.
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