*Please Read* Obstetric Cholestasis

[Cornfieldland]

Hi wondering if you lady's have any advice for me or if any of you had this. My upper right ribs and shoulder blade have hurt off and on for a month or so...getting worse and worse. I had a ultrasound and it came back normal for stones but my bile acid was elevated to 8.3 and normal is under 6.7. No itching yet and trying not to eat fatty foods. Did any of you have this pain? My Dr told me she always sees pts with the itching and I'm the first with the pain. She's not to concerned about it and wants a retest in 4 weeks while I'm pretty concerned reading online of all the potential complications. Thank you! Hope ur deliveries went well

 

[DaisyAnne]

Cornfieldland- I don't have any answers for you, unfortunately. Just wanted to say I hope they find answers for you! You can push to have another blood test in between, tell them it will help you feel at ease to know what's happening sooner. I don't know, I hope you find the answers you need!

I'm still learning about this whole thing, I hadn't heard about it a week ago, and now I'm looking at possibly being diagnosed with it and maybe needing to be induced in a couple weeks Sorry I couldn't help you more!!

 

[BellaRosa8302]

Any of you in here have itchy skin conditions under normal/non-pregnancy related circumstances??

I have angioedema & dermagraphic urticaria. Basically, before pregnancy, when I didn't take my meds (Zyrtec), I was itchy EVERYWHERE all the time. And if I scratched, the itch just got more intense. Luckily, in pregnancy, when I went off the Zyrtec, after a period of time, the itching went away.

So, fast forward to now (I'm 36 weeks), the itchiness is coming back. It's not everywhere... mostly my scalp, feet, sides, & back... and usually just one of those places at a time, rather than my whole body at once.

I don't know if it's my angioedema/dermagraphic urticaria returning, or if I need to worry about this OC stuff.

Any advice?? Thanks in advance!

Edited to add: I am REALLY tired often, but I'm also slightly anemic (and who isn't tired in pregnancy??) As for the overheating aspect... yeah, that happens a lot too, but I'm a teacher & my classroom is very warm! At home, despite it being Winter, I dress in short sleeves... not normal for non-pregnant me, but again, I feel like that's pretty normal for pregnancy....?

 

[DaisyAnne]

BellaRosa- I'd mention it to your doctor, and they can run a blood test to check? It sounds complicated in your case, but I was just reading that you can have both some kind of skin condition and OC... better to check I'd say!
I haven't officially been diagnosed yet, but my "overheating" is just certain times. I normally am warm anyway, and pregnant I run warmer in general. But there have been times lately where I'm just dramatically warm and it's overwhelming (usually coinciding with extreme bouts of itching, as well) and times like right now it's winter, yet I'm running the fan full blast over me in the living room... I think the main symptom is itching generally, but you can have some of those other symptoms as well? I'm still learning about it! GL!

 

[BellaRosa8302]

Thank you, Daisy! I have an appointment tonight, so I'll mention it.

 

[DaisyAnne]

I'm wondering if it's normal for the itching to come and go? It seems to cycle through every couple days, being mild and then get really bad. Some nights have been awful terrible trying to sleep, can't even have a sheet on me... then some nights I sleep perfectly fine with minimal itching. Just anxious to hear my results, but it seems like many women have it come back normal for weeks after the symptoms start before it shows up in the blood work. Does that mean it's still dangerous for baby if you're getting closer to your due date and you're having the symptoms of OC, but it doesn't show up in your blood test until late? Ugh, I'm just not sure how to trust any results I get that come back as normal and how it could affect the baby if it takes weeks at this point to get a diagnosis???

 

[Cornfieldland]

Have you been to this website? They have a lot of useful information on OC, I found it very helpful. www.icpsupport.org
I've heard that it can still be dangerous if symtoms come and go because it'd isn't mean your levels arnt elevated. Do you find your itching gets worse when you eat fatty foods or refined sugar? I've cut a lot of fat from my diet and my bile acid levels dropped a bit. Mine arnt high enough to cause the itching yet, I have the pain daily. I guess the pain is more rare because my DR had only seen pts with the itching. My bile acid is 7.8 it was 8.3 and normal is under <6.7. Hoping mine stay down.

 

[BellaRosa8302]

I explained my angioedema/dermagraphic urticaria condition to my doctor, and she thinks I don't have OC... she thinks the itching I have is related to my skin condition returning. She didn't test me for OC. She said the people she tests for OC come in scratching till they bleed. Maybe I'm more used to constantly feeling itchy (and refraining from scratching, because it makes it worse), due to my skin condition, but this isn't even as bad as when my skin condition is really bad. I wasn't convinced I had it anyway, just wanted to be cautious.

Good luck to you ladies who do have this condition! I hope you and your babies stay safe

 

[Cornfieldland]

Sounds like with ur condition it would be hard to diagnose without a blood test, since you get the itching anyways. My bile acid is elevated without intense itching, I barley itch, but I know usually that's the case. Your almost there anyways not much longer now!

 

[DaisyAnne]

Cornfieldland- do you know what your bile acid number was?

Mine came back as 8.9, and they don't consider anything below 10 to be elevated (although I've read around a bunch and it sounds like there's dispute over the levels being above 8.5, but currently the standard is 10). They restested me this weekend to see if the levels are going up, so I should find out tomorrow. I also go see a maternal fetal specialist to see what they think. It's apparently quite common to have the symptoms for awhile before it shows in the blood tests! Which is frustrating, as I am SO itchy at this point it is driving me nuts and I can't sleep!

Although, Bella Rosa, I've read many ladies say that they have mild itching or it starts as just mild itching before it gets bad. It seems like it's pretty uncommon, so there are a lot of doctors who go about diagnosing it differently than others. If you think you have it at all, I'd just ask them to check for peace of mind. But sounds tricky in your case!

 

[Cornfieldland]

Daisy mine were 8.3 about 5 weeks ago. Now they are 7.7. I have tired to lower my fat intake so maybe that has helped. I get a bit itchy if I eat meat and junk food, but mostly it's the pain. I got tested because of the pain and had a ultrasound as well. It's really bothering me, mostly in the afternoon and if I sit in the car to much or bend to much. My Dr hasn't had anyone with the pain, just the itching, and since my levels are not to high and my ultrasound was clear she doesn't know what to do. No mention of seeing high risk of fetal medicine. Maybe I'll push for it next appt cause it's not normal to be hurting every day. I'm a bit itchy here and there now that I've been eating more meat and sugar the last couple days. Oh, and I have to pay 40$ every time I have that bile acid test cause it's not covered! Boo!

 

[DaisyAnne]

Daisy mine were 8.3 about 5 weeks ago. Now they are 7.7. I have tired to lower my fat intake so maybe that has helped. I get a bit itchy if I eat meat and junk food, but mostly it's the pain. I got tested because of the pain and had a ultrasound as well. It's really bothering me, mostly in the afternoon and if I sit in the car to much or bend to much. My Dr hasn't had anyone with the pain, just the itching, and since my levels are not to high and my ultrasound was clear she doesn't know what to do. No mention of seeing high risk of fetal medicine. Maybe I'll push for it next appt cause it's not normal to be hurting every day. I'm a bit itchy here and there now that I've been eating more meat and sugar the last couple days. Oh, and I have to pay 40$ every time I have that bile acid test cause it's not covered! Boo!

Did they put you on urso or anything? That can lower your bile acids, too. Yeah, I've been trying to cut out fatty and greasy, sugary foods and caffeine to try to help. Haven't really seen much of a difference as this weekend was just miserable!
Also, I did a whole lot of reading about OC/ICP recently, and I did come across some info that some women start with the pain before the itching, really. It's so uncommon anyways, and then it usually presents as itching first that your doctor probably hasn't seen it personally, but it does happen apparently- just not as often. I hope your itching doesn't kick up much! What is their plan for you for delivery?

 

[Cornfieldland]

I know it's hard to stick to the diet, I still eat sugar but I'm eating better than I was. Weekends are hard. No medication, I think unless my numbers are higher they don't seem to think it's serious. I've only seen my OB three times for like 5mins, and now she's on vacation and I'll be seeing someone else until I'm 36wks! My Plan is to ask for clotting time and bile acids blood work around 35wks and see what my results are. Then I'm going to ask to be induced between 37-38wks. That's my plan I've had two induced deliveries before, one at 39, one at 37weeks and they went smoothly so hoping for the same.

Are your numbers back?

 

[DaisyAnne]

Still waiting on my next numbers, but I had my specialist appointment today. They really think I'm in the gray area whether I have it or not, so they're not quite sure what they'll do yet. They explained that basically the higher the bile acid number, the more likely it is you have it... but there's no "number" that they can definitively say you have it or not. So, they say my 8.9 with symptoms is iffy one way or the other? I dunno, I just think I have it! So they're treating me currently as though I have it. Put me on urso, if it helps the itching, then it's more definitive that I have it. If my next numbers come back higher, then it's more definitive- and with either one they'll induce sometime soon... but that's super confusing as well! So it was just all really unclear still!

 

[DaisyAnne]

Well, I'm going to be induced at or by 38 weeks. Just have to wait for my OB to schedule it! The urso has helped my itching, so they're treating me as cholestasis. My mfa doctor isn't sure whether I actually have it, but I think I do have it. They want to treat me for it anyway, bc they don't have enough time to get more tests and a definitive answer. Glad they're being safe! And I'm so glad the itching has improved as it makes the waiting to meet baby more bearable!!
Hope your spots with the substitute doctor to well and they can get you delivered when you want!!

 

[glovities]

I see its been a while since anyone has posted in this thread but i am currently suffering with terrible itching and have been for more than a month. Its to the point where i can barely wear clothes, in fact there are certain fabrics i cant wear at all. I had bloodwork at about 28 weeks to test my liver functions and they came back normal. I have been itching since then. It started with my hands and feet but now it is my entire body even my face. What do you think I should do?

 

[DebbieF]

I see its been a while since anyone has posted in this thread but i am currently suffering with terrible itching and have been for more than a month. Its to the point where i can barely wear clothes, in fact there are certain fabrics i cant wear at all. I had bloodwork at about 28 weeks to test my liver functions and they came back normal. I have been itching since then. It started with my hands and feet but now it is my entire body even my face. What do you think I should do?

I would request more blood work as soon as possible.

 

[purelygemini]

Omg yay this thread is active again! I've been dealing with this for the past couple weeks and haven't had anyone else to talk to that's also been going through it. I'm currently going through my third round of testing to fully determine whether I really do or do not have cholestasis or am just going crazy lol!

Glovities~let me know if you want to chat more and compare symptoms, I'll also tell you about all the different testings I'm going through too if you want to know!

 

[EBAUERHAUS]

Hi all! I never thought to come here after being diagnosed.
I'm currently a week and a couple of days away from my induction date (puts me at 36 + 6 days).
My bile acid numbers were in the severe range, 67.9. I'm taking 250mg Urso, three times daily since I was 29 weeks, which was when I was diagnosed.
My itching has almost entirely subsided and my liver and bile acid numbers have returned to normal range which I think makes me one of the lucky ones, as the meds don't always necessarily help the itchies.

I am only on every few days and once baby is here, perhaps less often, but feel free to message if you'd like.

 

[ttc126]

I never thought to post here either! Was diagnosed last week at 33+6. C section is scheduled for 36+0.
The med seems to have started to help me too after being on it for 11 days. I had lost my appetite completely and stopped gaining weight altogether in addition to the itching and that’s gotten a bit better too.
I am surprised they’ll do a 36 week c section for it but I do appreciate them keeping baby safe.