PBC Foundation
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Biopsy results

Hello all,

I got a call from my GI's office with the results of my liver biopsy. She said it confirmed the diagnosis of PBC, but that she believes I have an AIH overlap. She said it was not noted on the biopsy results, so the doctor was currently on the phone with the pathologist who read my biopsy asking him to double check his findings. She asked me to go have labs drawn that would help confirm or deny the AIH overlap, which I am scheduled for tomorrow morning.

My MRCP was totally normal, "unremarkable in anyway.

So... obviously I'm still scared. The jaundice is clearing by the day, so I'm hoping the Urso is working. As a note, I was jaundiced to the core when I had my baby June 29th, almost 12 weeks ago. I mean, the OB/GYN doing my c-section had students with him and said "We may have a very jaundiced baby on our hands as the uterus is jaundiced." He was not. He is perfect, but my uterus was yellow, the amniotic fluid was yellow, my breast milk was neon yellow and I was advised to stop nursing and we went to formula before leaving the hospital. So maybe some of this is that jaundice still clearing out of my system?

My ANA was negative. I thought that ruled out AHI? Am I mistaken? Any advice or whatever is greatly appreciated. My husband is away from home for the week and I'm quite scared.

Thanks ❤

17 Replies
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Hello,

I'm surprised they didn't stage you. That's crazy making you stew with not knowing. Great the MRCP is unremarkable 👍.

I'd give them a call and if indeed it's PBC like you mentioned, ask them what stage do they think your in. It sounds like the URSO is working... Yay for that too!! And, it sounds like you're doing everything you can to put up a good fight with this AI. Your diet sounds like your definitely on the right track for taking care of a compromised liver! 👏👏👏👍

Once you have more answers hopefully your fear will subside some. Just know this, you're already on the med (URSO) that s l o w s this stinkin' disease waaaay down. Plus, you've changed your diet in order to baby your liver too. Once you find out about the AIH you can move ahead accordingly with meds for that too. There are others on here with AIH overlap. I'm sure they'll chime in here soon.

It's great your yellow coloring is slowly getting better. That's excellent!!

I know how scary all this is believe me. When I was first diagnosed Xanax was my good buddy!!😳

How are you feeling today? What are your symptoms? I know it's really got to be hard eating the way we have to eat but cooking something completely different for your family. A new baby, a big family, a scary diagnosis.... It's enough to drive anyone over the edge. Take a deep breath.... one step at a time.

I hope you can get your questions answered and go from there. ❤

Stella

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Hello Stella,

Thank you for your reply. The person who called was a medical assistant so she may not have had the full information. She told me she would call me back with the stage once they received the lab results and my Dr had spoken with the pathologist.

I am feeling fine. I walk 3 to 5 miles a day with my baby in his stroller. My husband says I have "Restless Mom Syndrome because I never sit down. I am tired, but... I get up all hours of the night to take care of the baby. I take a nap with him after my walk. I'm itchy, but so much less so than when I was pregnant. Overall, I feel fine. It's so hard to believe that I'm sick. Now I'm still a bit yellow and my hair is falling out... thinning out quite a bit which is unnerving but otherwise, I'm alright.

It is scary right now, although I know any one of us could drop dead any moment from, well, any number of things. I just need to be here for these kids so yeah, anything... anything at all We can do to make this turn out better is what we are willing to do.

Thanks again. I'm trying to chill but I'm terribly frightened as I'm the glue... I'm literally the thing holding this whole little world of mine together.

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Awe.... I definitely see that "you're the glue" from all your posts. Don't you know Mom's don't get sick???? Lol... If only that were in the Bible!!

I bet that's where all the fear lies.... and understandably so. So many counting on mom!

Well, you're doing the right things. You gotta takecare of you first so you can takecare of the rest.

Keep us posted when you find out anything OK? 🌼

Stella

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Thanks again, Stella. And yes, that is my fear.. I have to be here and be healthy enough to take care if everyone.. my babies and my hubby.

I'll let you know whenever I hear anything. 🌷Thanks again!😊

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Prayer support 🙏🏻

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Thank you sincerely! ❤

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You're so welcome 🌷

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So much truth in the old song "the hand that rocks the cradle, rules the world". Most women are who keep everything stitched & solid😊

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Could yiu please tell me what diet you are on to help PBC

Thank you

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I'm eating anti-inflammatory /liver diet. I just looked it up online. My dr actually said I did not have to change anything, but I feel better, like I have some control over this disease doing it.

It's just avoiding refined carbs (white flour, white rice, etc), sugar, processed things. Low sodium. I just eat vegetables, fruit, Brown rice, lean meat if I eat any at all. I'm eating as close to natural as possible. I'm not sure it is helping, but I'm positive it's not hurting anything. 😊

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Thank you , it can only be a good thing I eat in a similiar way lots of fish too . I am also worried about hair loss

Miriam x

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I hope you have better luck! I'm hoping mine slows down.. I've been on the URSO 3 weeks and my hair is definitely thinning out alot.

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I hope it slows down for you and grows again. I am not on it yet awaiting final diagnosis on blood tests. Should know tomorrow . All such a shock esp the results of fibro scan

Miri

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Must be the nature of Urso. I was on it very short time but lost a bit of hair. Oclavia doesn't do that. May be the only thing it doesn't do, lol!

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Sorry to hear that . I already have very fine hair . Oh Joy!!! X

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I'm sorry to hear that . I already have very fine thin hair. Oh Joy!!! x

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Myself

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