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3rd Trimester
mrsjengle
member
Cholestasis help please
mrsjengle
member
I need help. I'm scared, and I don't know what to do. My LFTs are high. AST 75 ALT 141. My billirubin is 1.5 which is also high. I've been going in to my OB for weekly appointments and labs since the beginning of March. I've been tested for HELLP, Pre-E, mono, hepatitis. Everything keeps coming out normal. A couple of weeks ago I started itching. Last week I mentioned this to my OB. He had no clue what I was talking about. He said that those patients are very sick and very yellow. Actually he made me repeat the term once when I asked about Cholestasis because he obviously didn't recognize it. I left the appointment upset that he wouldn't order the bile acid test. I called back in the next day and insisted he ordered it. He did. It's not back yet. In the mean time, he made an appointment with a MFM doc in WV. I thought we might be on the same page.
Today, I went in for my regular OB appointment with him. He came in and said he made me an appointment with the specialist because he knew I was worried. He told me that my LFT's are a little high but they are staying the same. This isn't true because my LFT's two weeks ago were AST 57 and ALT 82 and last week they were AST 75 ALT 141. My ALT almost doubled in one week. Then he told me that he talked to a specialist and he said that I probably have mild Cholestasis of Pregnancy. He said that it's normal in pregnancy. I asked him what he would do for that. He said, nothing. It's mild. It'll be ok after you deliver. And I said, "don't you deliver early?" He said no there's no need. You're fine. And I asked him well how do you differentiate between mild and severe? And he said you just use the LFT's and billirubin. He said, I'm NOT inducing you early. There's no need. If they want to do that at WVU, they can do it there.
He clearly doesn't know what he's talking about. I have this MFM appointment on Thursday, but I'm so worried that if he already talked to them and he still feels this way, that I'm going to get there and they are going to be the same way. In all the research I read they always induce early at 37 weeks regardless of whether it's mild or severe. In severe cases they induce even earlier. He's not going to do NST or biophysical profiles or anything. I'm so scared that I'm just going to keep slipping through the cracks. I do have the MFM doc on Thursday to talk to. But I'm just terrified.
Please, give me all the info you have. I've read every thing I can find. Am I missing something? Am I wrong? What do I do?
I'm sorry this is so long. I've very scared.
This discussion has been closed.
Re: Cholestasis help please
I would wait and see what your MFM says. He/she will probably start you on NST's and monitor you weekly or bi-weekly. Hopefully, the MFM will consider you classified as mild right now which gives your LO more time to cook and get those little lungs matured.
That said you should have a relative amount of trust with your doctors. if you don't trust them then you should seek another practitioner. Good luck...I hope you feel better soon and get better answers.
At any time if you are afraid for the health of you and your baby you should just go straight to L&D. They will not let you leave there without answers.
I have had no abdominal pain. I had an abdominal series when I was admitted to L&D at the beginning of the month. It showed an enlarged spleen and a pleural effusion. The hepatologist said the enlarged spleen was due to my organs being squeezed because of the pregnancy. The pleural effusion was explained away as my organs rubbing each other because I'm pregnancy. Neither were treated.
I know that some women have much higher LFT's, but I consider a month of abnormally high LFT's to be a concern especially since the OB said that the specialist he talked to said it was a mild case of cholestasis. I've never read any report that says for "mild" cases there is no monitoring, not NST, no biophysical profiles and no need to induce early.
Jengel,
Did you not get my lengthy reply back to you a week or two ago about ICP??? I responded back and said I'd help. Your doctor is UNEDUCATED.
I was not and never have been jaundiced nor did I ever have abdominal pain or elevated LFT's. I need to know... have you had a bile acid test? Also referred to as a serum bile test? These are the ONLY tests that diagnose ICP. Please PM me or email me at Srodbrecht@gmail.com I can provide you lengthy resources to help and if all else fails you can go get the blood work done on your own if your OB isn't being educated.
Wait, seriously? These aren't signs of ICP. Please, if you don't know ICP, like many of the nurses and doctors, please don't act overly educated on it.
And elevated LFT's mean NOTHING... I have never, ever, ever had elevated LFT's but guess what... I have ICP... my numbers tripled in DAYS into severeity... and they continue to do so with normal LFT's. If you are as educated as you claim, you'd know only 60% of ICP sufferers have elevated LFT's.
Yes, I did get it. Thank you so much for all the info. That's why I'm so concerned. My bile acid was ordered last Thursday. They aren't back yet. So, to be fair, there's a change that they will come back normal and I wont' have this at all. But, having my doc tell me what I know to be wrong information and to state that I will NOT deliver you early, is terrifying. Thank God I have an appointment this week with MFM, but he made it sound like he already talked to them and they said that they don't treat "mild" cases. How he knows that I have a mild case is beyond me since my bile acids aren't back yet. That's how I know without a doubt that he isn't educated on this.
I guess I'm just worried that if he already talked to MFM and they told him not to do anything no monitoring or anything, where do I go from here? I know I'll find out for sure when I get to talk to them on Thursday, but I was just so thrown by everything he said. And, obviously really worked up about it.
First and foremost, I am outraged by the "nurse" who commented. SERIOUSLY. That's what I call uneducated. It's a rare disorder ~1% so she doesn't know all about it. That's a damn sure and her post proved it. Please DO NOT LISTEN TO HER.
Secondly... DO NOT SETTLE ON ONE BILE ACID TEST. You need multiples. If I stress to you anything... PLEASE understand that BAT's don't come back accurate right away. They sometimes take several tests to elevated. Here's my recent results:
March 6- 13.4
March 12- 39
March 19- 57
See how they've risen? That's ALL on medicine too. Had we only gone off the first test, I *never* would have been diagnosed. ALSO, your doctor might say that anything under 20ish is not ICP. That is not true. Standards recentely changed and Labcorp hasn't changed their standards of elevation yet. Anything above 11 IS ICP. There are medical journals that support this. Please read them, print them, and bring them to your doctors.
My best advice is to go to itchymoms.com and read up... babycenter.com has an ICP forum with many helpful ladies as well as LOADS of links to medical journals. You can't sit around on this, you'll have to push push push your doctor. But I assure you, if you only do one BAT then that isn't sufficent.
Also:
Have you been calling to see if results are in? The test takes 48 hours for me to get back but the lab is also very close.... which makes a difference.
With that said, as I've mentioned, you can get the test done on your own through Labcorp. It'll cost $60 or but that's what I had to do initally and thank Gosh I did. I really hope you won't give up if one test comes back "normal." I cannot express to you how COMMON that is. I do also hope you'll keep me updated. I'd been wondering what was going on so I am feeling really sad seeing you post about this again. I feel like I can arm you, along with other ICP sufferers, with loads of help. So please take it.
I am being induced tomorrow (I will be 37w, yes my ticker is off) but my computer will be with me. I don't want you to feel alone in this. I was in severe distress when I wasn't being listened to in the beginning and you need people who can help you.
Yes, my normal OB wouldn't order a follow up Bile Acid. But we don't have the first one back. I'm hoping that the first one comes back before Thursday, so that I have something to show to MFM. Hopefully regardless of what the first test shows, the MFM people will repeat it. I had the first one on Thursday, so it's very likely that those results will be here by this Thursday.
I did find the Cholestasis group on baby center. Susan has been very helpful. Also, I got lots of good info from the informational post.
I understand that my normal OB might be a complete moron about this, but it concerned me when he said he talked to the MFM specialist and he said that it's probably a mild case. Then he followed that statement up with the fact that he won't be doing special monitoring and will not consider inducing me early. I hope to God that is not what the MFM dude told him. Because if so, I'm up *** creek without a paddle!
EDIT:
I saw the rest of your post. I call every week for my result and I also get a print out of the results from the lab tech when I go to get my next set of labs drawn. He always orders a CBC and Chem panel. I was just in today. The lab tech knows me; she's even worried about me. She said it's not back yet. Hopefully tomorrow.
Was your itching severe before meds? Mine fluctuates. It's definitely worse at night and in the morning. Some times it drives me to wanting to rip my skin off and sometimes it's not bad at all.
Mild... wait, really? You see how my numbers went up. LOL. They tripled in a WEEK. You need a new doctor, seriously. It can go from nothing to something OVER NIGHT. Susan is wonderful and knows everything about ICP. Please take her word... she will not fail you and helped me along the way, too. Whatever you do, get multiple BAT's. Keep stomping those feet. Keep raising heck. Throw a tantrum. DO WHATEVER YOU HAVE TO DO--but don't take no for an answer. I'm telling you... I was told NO multiple times and my OB nearly sh*t his pants when he realized how wrong he was and how right I ended up being. I know hardly anything about anything but damn right I pushed, stomped, fought, and screamed to be properly cared for when it came to this. You need to do the same.
Thank you so much for all your help. I'll definitely keep you posted. I hope your induction goes smoothly tomorrow.
The severity of my itching came and went in the beginning. It was so terrible. It's leveled out a lot now because of the Urisdol. Last night and today have been itchy but there are some days I hardly itch at all... and that's WITH higher Bile Acid numbers. Go figure. Night time and morning were always the worst for me with itching. If I managed to stay calm I could keep it controllable but if I was woken up by it I would lose all sense of dignity and would cry and want to rip my skin off. It wasn't all the time or constant but when the itching got so severe, all I wanted to do was lay down and surrender.
Have you gone and bought Sarna cream? Best stuff I've purchased to manage the itching. They sell it at Walmart. It will bring back some sanity to your life!!
Find someone else to deliver you! I had "mild cholestasis" my bile number was 13 (0-10) is normal. I was immediately put on Ursodiol and was to deliver at 37w or before. I was at one of the "top" university hospitals in New England btw (BWH). Your OB sounds like an idiot. I ended up delivering at 34w2d for a completely different reason and my kids are fine. They should at least be treating your levels with Ursodiol to keep it from going out of hand though. My doctor said any bile number over 40 is very dangerous for baby and requires immediate delivery. Anything lower can be watched and treated with Ursodiol but delivered at 37w or before. I was dx at 30w btw and only had the itchies for 2 day before dx. I also had weekly NST's by the way and bi-weekly bio-physicals and u/s.
Evac2- nurse above is confusing two different conditions. I'm not a nurse but a highly informed patient who have had both disorders below. Also, I work in the health field and know too much as a cancer survivor.
To the nurse above (tiffany048) she is asking about Cholestasis not Cholecystitis