Advice and information

Had a heart wrenching week since I found out about PBC.

Went for an ultrasound yesterday and got the results today when I visited the doctor.

He said I have a strong positive for AMA indicating it is PBC but consultant has to officially diagnose.

He said I had one slightly abnormal lft result 135/normal 130 but he wouldn't have even done anything about it, all others normal and the ultrasound came back all normal too. Only symptom is tiredness but I do have a baby, work full time and have a big garden.

I am slightly scared to be too positive incase he's wrong. What do you think this means? Found something called hope and I don't want it to come back and bite me.

31 Replies

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  • HUGS - the first week after I found out was the worst. I cried all week, only thought about death and making provisions for my son's care - got my will done right away. After that first week, I could refocus myself and turn to positive. But right now for you - you're in limbo because you don't have a definite diagnosis - that's hard.

    When and if you get your diagnosis - don't be surprised if you feel all these things all over again :(

  • I think I've resigned myself to the fact it is this. I'm so gutted. So hope the ultrasound is accurate which means it's early. But I hardly dare let myself hope that. Keep thinking it can't be me but know deep down its true.

    Trying to block it out and be positive just feel gutted. My son is only 15 months! Don't dare eat anything incase it makes it worse and scared to death of dying.

  • It's hard ... Death was on my mind a lot in the beginning - and every now and then it gets to me - but for the most part I focus on living ... :) we never know when our end will come . It's scary because it puts the thought of immortality right in front of us ... All you can do is make the preparations you feel are important (it helped me anyway),take your meds and live a healthy life -- but live it :) take advantage of your time :)

  • Do you worry about getting it so young? Are ur meds working? What were ur stats to start with? Did u have an ultrasound?

  • Please dont b so scared....there is life after a pbc diag and long ones.a lady at a surgery i was at had it and was 70!!and she was doing pretty well.

    My son was delivered at 35weeks due to my system being in a pickle and him stopping growing hes now 6ft and 17yrs old i also have 3 older ones..

    So you see ive been here for all mine to grow up.dont get me wrong it wasnt easy as the glandular fever and pregnancy togeathet did me no favours but i had awful lfts at that time some in the thousands!!!

    They all calmed down and went back to normal range after 1 yr since then ive been stable its only recently things have started to get to get worse but being realistic i was probably worse to start with than u are now.

    I had a biopsy that showed some stage 4 damage.i know everyone is different but i yjink when the dust settles and youve sern a specialist you will feel a whole lot better.

    The way i look at it is that there are a whole lot worse things to have cazer.

  • How long have you been diagnosed for? Will you have a transplant? Trying to think positive just always there at the back of my mind and worry being positive will hurt more if it's bad news!

  • 3 months after the birth.

    17 years ago!!!! Yes i am borderline for asessment for txp list but please bear in mind that sym ptoms were quite severe and lfts not good even back then!

    I think its highly likely yhat you will get a positive pbc diag(just my opinion) but it may be that your an old lady before it causes any problems.you can get on urso to slow progression.

    There is also a new medication coming to eorope in 2017.x

  • I think I have it. Dr x3 all seemed convinced. Scared ultrasound being normal has made it worse if biopsy bad if that makes sense.

    17 years is amazing! How old were you then and now? Do you feel OK in yourself? Is it positive after transplant?

  • 36 children were 9 7 3 and 3 myhs at diag ...not a good mix with pbc but all okay.

    One it lecturer(boy) girl..physiotherapisr.boy ground work/dairy farmer and baby 17 at college doing level 3 music tech...so lm a bit of proud mummy!despite me beimg poorly.

    I confess lve had fairly severe symps since the glandular fever 4th pregnancy but consult reckoned yhat the 2togeather knocked pbc on by at least 10years and put me into symptoms.prevoously to that id had odd mild symptoms but nothing much.like i say my lft was in 1000s and some bits biopsy #stage 4!!!!

    I was 36 then nearly53 now .each person is different but it could just b that you have some fatigue mild hopefully and the rest stays normal.

    Ive done a lot of pacing myself over the years and not topush yourself too hard as pbc bodies seem to need a little longer to recoup.enjoy life to the full but allow some rest time amd that willhelp a little..easier said than done with toddler.x

  • Also the eating?you can eat pretty much what you want..

    Best not to drink until you know whats going on.

    I would lean away from orange juice bit acid on tummy and some say red meat is not good although but ive never had prob with that.

    Extremely fatimlarge quantities e.g

    Fish nchips and a doighnut may give a bit of indigestion.what makes you think you cant eat? Cazer.

  • Read loads about having a low salt and fat diet. Stopped drinking completely although hardly did anyway with a little baby.

    My birthday tomorrow and every time I eat something worry I'm making it worse. Wanted to have something nice but honestly paranoid about eating anything!

  • Eat what you want and have a lovely biryhday its probably going to make b...all diffetence!!!yes probably long term ots something that might make you a bit healthier but thats for a dietician to look at .just eat normally.good if youve not had alcohol anyway as its more difficult for liver to process.i was told in beginning o could have odd glass if i wanted for celebration but i fould it made me feel dodgy so just never botjered.

    You are pitting too much pressur on self.just eat normally then if you get a diagnosis adk consult about diet

    There is masses of advice out there for diets not all helpful.you will not give yourself cirrhosis by having birthday cake and a glass of bubbly.

    Stressing over it all will do more harm than a bit of fatty food.

    Have a lovely birthday im sure you are going to make old bones and you are putting yourself through so much anguish for nothing.

    Just think worrying does nothing!we have very little control over pbc...so worrying will change nothing just make us feel worse.

    My best wishes for a happy day tomorrow and enjoy it.xx

  • Thank you xxxx

  • In the beginnig i had ultras and check ups every 3 months but was pretty rough as tjings calmed down and lfts went closer to normal i started 6mth check then yearly .in the last 6mths ive gone to 3mth agaim ultras every 6months and bone scans now and then.

    If you havent already then go on pbc foundation website as they have good info.x

  • I am in the same situation, high lft and positive for AMA,s. My doctor said I need a liver biopsy to confirm PBC. You only have fatigue for a symptom, no itching? From what I have been reading on this sight, having AMA,s don't mean you have PBC. Don't give up hope, I am not.

  • What was ur lft? My doctor seemed pretty convinced was Pbc. Have u had an ultrasound?

  • My AST were 1448 normal is 40 and my ALT was 2384 normal is 32 and my Alkaline Phosphate was 233 normal is 117. And my ultrasound didn't show anything abnormal.

  • Even if u get a positive test it does not mean its that bad....having a baby is one of the things that can pit extra pressure on yhe liver.i had glandular fever whilst pregnant and believe that knocked the whole thing on a lot but if you have almost normal lfts yhat is great news.

    As you get further from birth hopefully your system will calm down .

    The fatigue could b pbc but in hindsight i had that a long time before being more ill witj pbc.

    If it is pbc then at least you can have urso which is shown to help lfts.

    Domt panic i know it all seems scary but concentrate on the good stuff and try to lool after yoirself eat well sleep enough and dont give yourself too much to do.you might need a bit of healomg time after birth.best wishes cazer

    X

  • If u want to ask any more questions please carry on but will chat soon .please please try and have a lovely birthday.the rest will come out in the wash later!

    By the way how old are you ? Dont worry about replyong now as im sute uoir busy with your little one.x

  • I'm 30. Mega worried about being so young with it

  • Hi Chazzy. I was diagnosed at age 33, 13 years ago. My son was 3 months old. Nothing in my life has changed since the day I was diagnosed. I haven't changed my diet (apart from eating healthier to lose weight), I enjoy a few drinks at the weekend and on a night out. I was told I was more likely to die with PBC than from. Please try not to worry about it, it really isn't the death sentence you think it is. x

  • Were you early stages when you were diagnosed? It's my birthday today and your post has made me feel so much better. Hope I'm like you. Actually ate something other than salad for first time in ten days, got tummy ache now sure it's cos not been eating tho!

  • Well as far as I'm aware I'm still in the early stages, my liver hasn't really changed much over the last 13 years, and the Professor I see at the Queen Elizabeth Hospital said my results were not very exciting!!! Keep positive :-)

  • Feel like I'm analysing everything, feelings pains and not even sure they are there. But convincing myself it's something bad. Are your lfts normal then?is that the best indication of what's going on?

  • No, they're not normal, they're just not remarkable!! I don't think you get pain from your liver, so if you do get pain it won't be from there. I do however have a gall stone, which was picked up on an ultra sound scan, but lots of people have gall stones and not know about it, its not because of the PBC, and I do get pain from that area if I've been out for a big meal, not sure if its coincidence or not though.

  • I think it was more fact I've barely eaten and just had salad til yest when I ate tapas for my birthday. Shock to the system. Back to healthy stuff today :(

  • Hope you had a good birthday..

    Eat mormally you are just as likely to cause yourself harm by eatimg loads of salad you still need all the other stuff.you will b fine.yes maybe a positive diagmosis but that need not mean u get amy major symptoms .its really not that terrible even as i am its not that bad.there are lots worse things to hsve.just try and yourself.xxx

  • It's the life expectancy that scares me most. Think ur right about food tho xxx

  • I could b wrong but when you get to see a specialist i think yoi will probably b told similar to debbie that its unlikely to drastically affect your life expectancy.around about the time of the 9/11 hit in america was when i was diagnosed..it put it in perspective for me as we never really know when or how we will go.there was an air france plane drop out of the sky so when i thought about this rationally i realised that the odds with pbc are pretty good and we cannot spend jour whole time worryimg about our mortality

    Its just as likely that something else will get you sorry to be so hard faced about but you are driving yourself mad with something thats probably not going to happen.

    You need to enjoy your son and once youve got some answers hopefully u will feel better.

    Urso has been shown to drastically improve prognosis so if it is shown to be positive you will prob b advised to take that.

    All my best wishes to you.i do understand you are scared literally for your life but i felt much the same and soon realised it is not as bad as we all first think.

    Mine was much further on than u will turn out to b im sure.

    I was originally told i might need a txp in 5/10 years we are now 17and borderline for listing.best wishes cazer.x

    I hope you dont feel ive gone on too much.

  • No need a kick up the bum! Your right too. Need to worry when I need to worry. Going to put to the back of my mind until appointment. Thank you all. Xxx

  • Sorry prpb bit heavy handed it comes of being mum to 4!!!!x

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