Doc suspects PBC, 33 yo

Hi all! Thanks for reading... I had intraheptic cholestasis of pregnancy. I am now 5 months postpartum. 2 months postpartum I still had elevated AST, ALT, and ALP. 4 months postpartum the AST is now normal, ALT went down a little to barely out of range, but the ALP raised to 194. The GGT was normal. Saw a gastro today and he literally said if it looks and quacks like a duck it is a duck and he suspects PBC. So I am now getting the gammet of tests. I had a normal u/s. I did have a high ANA few years ago. My immunoglobins were all normal three months before pregnancy and never had elevated enzymes before. I just wanted to introduce myself and see if this sounded like PBC to you guys. My itching stopped after delivery. Just nervous raising a small baby with a chronic disease.

9 Replies

  • I've been diagnosed since October last year, I don't know if your levels are or aren't PBC, but I would like to erasure you that people can live with PBC and have a normal life expectancy, one side effect of PBC is chronic fatigue, so I'd say rest as much as you can and don't do too much on your good days otherwise you could end up having even more bad days. My outlook now is, the housework etc isn't that important in the scheme of things so if it's left for a few days so what!! I wish you well and enjoy your baby and just take things day by day and step by step. Lynnekg xx

  • Hi there I felt I had to reply as I worked for a midwife before retiring for 30 yrs. I saw lots women with cholestasis relating to pregnancy and I did often wonder if this meant they were more likely to develop Pbc later on. My understanding was that the liver recovered from this condition in pregnancy as it was only a temporary thing specific to and affected by your pregnancy hormones. If your doctor thinks it may be Pbc then I assume he has checked for the anti mitrochondrial antibody in your blood which will give a definitive diagnosis, as some people with Pbc can have normal lfts.

    I know you must be worried about coping with a baby and having a chronic illness but everyone with Pbc is different. My own story is of slow onset and progress of 15 yrs since initial diagnosis. Like the person before says concentrate on the important things and don't waste your energy on things that aren't . Take care, hope all works out for you x

  • Thnak you both. I have not had the results of the AMA back yet. But he was pretty sure because the ALP rose instead of decreased. Yet, the GGT was normal. He said the GGT doesn't matter, which seems opposite of everything I have read before. Three months before I got pregnant I was negative for any immunoglobins, like IGM, IGG, IGA, they tested because I was seeing a fertility clinic for male factor infertility. It's routine if you have ANAs. I have to wait 5 weeks until my next appointment.

  • Oh and negative to asma. But we will see how my AMAs go.

  • If I were you I would try not to think about it until you have further tests to either confirm of rule out PBC. Enjoy your little baby and even if it does turn out to be PBC you can have a long and happy life rearing your baby. You just get on and enjoy life as a mother and take care. x

  • Love this littlemo... So positive

  • Hi, I was diagnosed 3 months after 3rd child, 2 years ago. I rarely think about it now. I worried how it would change my quality of life and I was scared about the future but now I am happy and content. At least I know I have this and can do all I can to help keep myself as healthy as possible for me and my family. I do have the odd day when I get a feeling of dread and worry about the future but this is very rare. It does seem surreal but life hasn't changed in 2 years except to say I am actually happier in lots of ways. Take care. Melly xx

  • Thank you. Do you mind me asking what led to your diagnosis? We're you itchy during pregnancy? What was your enzymes like? It is definitely on my mind all day everyday. I had itching horribly during pregnancy and to have that itch again so severe is a huge fear of mine as I was almost suicidal. Didn't sleep for three weeks until they gave me hydroxyzine. Couldn't even wear clothes, just big nightgowns all the time.

  • I had raised LFTs at 7 weeks and then started to itch at about 13 weeks. It drove me crazy!! They didn't suspect PBC until after a further blood test at about 20 weeks. They weren't really sure and kind of tried to say it was pregnancy related and would all go away after. I stopped itching straight away but my LFTs shot up again. Can't remember the exact numbers but pretty high. After 2 weeks of URSO my numbers halved and they have been on a slow downward trend since. Last test was about 20 points out of the normal range for ALP and AST but still high for GGT and my cholesterol is on the high side too. No other symptoms. My heart goes out to you re the itching.. a living hell! Hope you are ok. Mel xx

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