Just Diagnosed

Hi Everyone,

I have just been diagnosed with PBC and very scared about the condition as I dont know a great deal about it, only that there is no cure.

About six years ago after a regular blood test for underactive thyroid my doctor mentioned my Liver Function was abnormal, he didnt suggest doing anything about it so putting my trust in him I thought it was nothing to worry about.

Last year I saw a different doctor and he said we need to investigate, Blood tests, Scan and a Liver Biopsy. I was told 3 weeks ago it is PBC, to my horror I thought after being left for 6 years with no treatment, what state will my Liver be in. I have been on Urso since the Biopsy 2 months ago but my GP has not offered any other treatment or advice. I will not know until next week when I see the specialist how progressed it is. Any information from you guys who have experience about treatment and Diet would be very helpful and appreciated.

Very Scared Palula

13 Replies

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  • I am in the same position as you, - just diagnosed this week and sent on my way with a pile of tablets and little information or advice. Actually... I got no information or advice!

    I've found more information, advice and support on this site than I have found anywhere else.

    Don't be too scared. I know it's pretty daunting and scary when you look at all the cold hard facts.

    There are plenty of people here who will answer questions and give you plenty of reassurance. Most importantly, nobody will think badly of you for asking what you might think is a daft question. Every single person here has been where you are now and they know how scary it is.

  • Hi Ya SC49,

    At least im not the only one, I have realy lost my faith in local GP. I hope the specialist will be a little more helpful.

    I must say that I soon found this website and after reading a few comments I didnt feel so helpless and at deaths door.

    It seems Diet plays a large part in managing it but I could sleep for England, you wouldnt believe how many hours a day, I wake up in the morning feeling so tired even though ive had a good 7 hours. I also have a 15 year old son with learning disabilities, I know he cannot help it but he doesnt have the ability to clean up after himself (lacking organisation skills) and he does leave a trail of mess everywhere he goes lol so it is so much extra work. I have read on here that we need to pace ourselves so for the next few weeks thats what I mean to concentrate on.

    How are your symptoms and have you learnt to manage them.

  • Hi Palula

    Please contact the PBC Foundation, especially as you have a son with special needs honey, you need support and specialist advice!

    Don't be scared, Pbc is a condition that can be managed honey, and you need reassurance and the best woman for the job is Collette at the PBC Foundation.

    My advice is don't google PBC on the internet, it can be very depressing reading out of date blogs and info that is just not correct, THAT can make you scared, like I said contact the foundation, they're the best people to help you, and on here of course!

    take care xxxx

  • One of the most reassuring things that I have read is that the extent of tiredness is not a reflection on how bad your condition is. People just have different symptoms at different times and its different for everyone. I think the best advice I could give you is to go with the flow and don't push yourself too hard until you get to grips with things. If your son leaves things laying around, it is not the worst thing that could happen. Nothing bad will happen because your house is not spotless. When you're really tired, you learn to weed out the things that don't matter - even though it can be frustrating.

    Anyone round you who doesn't understand probably doesn't matter either. Some days, you will feel a little more energetic - you can get stuff done on those days! Or you can do what i did and get addicted to Real Housewives, jeremy Kyle and Judge Judy :-)

    I haven't really got to grips with the eating side of things - i am a veggie and eat reasonably well. I don't drink tea, coffee or fizzy / sugary stuff. I don't drink alcohol (which is a necessity rather than a choice). I have an unfortunate liking for chocolate! And I smoke - which I realise is probably the second worst choice I could make. At the moment I am trying to organise a schedule of eating and taking tablets at the same time - once i have cracked that, I will look at how to eat better and pack in the smoking. Which reminds me - I forgot the tablet again!

    My main symptoms have been tiredness and a really fuzzy head. They have both floored me. I sleep all the hours god sends - I take my wee fella (13) to school in the morning and then run round the house trying to put some order on it before I have to sleep. I sleep for maybe 2 hours and then go and get him from school. When i get back, I run round again doing tea and homework and tidying up and then fall asleep again - maybe for another hour. I sleep as normal at night. I have just decided to give in to the weird sleeping.

    The fuzzy head has been really difficult for me - i feel as if someone has abducted my brain. I can;t read for more than about 10 minutes and I can;t process the words or information on the occasions that I do get a bit of reading in. I would normally read all the time - I read a lot for my job, I was studying for a MSc, I read to my son, I read for pleasure, I read the papers, I am a compulsive looker upper so I was always learning one way or another. My job involves reading, writing reports, making judgements, developing and implementing plans and participating in meetings with funders and other agencies. Since I started having symptoms about a year ago, my capacity to read, write and think has all but disappeared. I miss reading so much I can;t even find the words to explain it. I also find meetings impossible because i can't follow the thread of discussions.

    I can;t even do easy sudoku puzzles. I feel very very stupid - and I understand how daft that sounds but it's true. I leave cooker rings on, I forget to lock doors, I forget what I am doing in the middle of doing it - it is horrendous but beginning to get funny now.

    I suffer from having teenagers in the house as well - and believe me, your son is far from alone in leaving a trail of bedlam behind him. My kids are 13 and 20. They're like 2 hurricanes - in the nicest possible way. Luckily I am not houseproud! My daughter is off to uni again in a few weeks and I will miss her chaos :-)

    I am lucky with my GP, the practice nurse and the admin staff at the health centre. They have taken the time to find out what they need to know, they didn't rush into a diagnosis ,they listen to me in relation to symptoms and how I am feeling, they have pushed the hospital as best they can and basically I trust them. They are calm and reassuring and they have answered my questions as well as they can or found out about things when they don't know. They have never made me feel like a nuisance - even though they must be fed up looking at me. I have been at the health centre at least 20 times in the last 8 months for bloods and advice and prescriptions.The hospital on the other hand has been a whole other story.

    keep smiling because that's the best defence you have against chaos, tiredness and bad days

  • How on earth do you watch Jeremy Kyle :)

    I think being a veggie will be to your advantage, I used to be until my 20's and now only really eat fish, Dietician was delighted with my diet. I suffer with low iron time to time (that actually led to my quick diagnosis in May, I was so low I was sent to A&E by my doctor and ended up in for 3 weeks with every test under the sun and a transfusIon) so I eat a little red meat evey now and again. I find eating every few hours is the best thing for energy, although at the moment I don't seem to have that great tiredness others have. Plenty fruit & veg, no fizzy or alcohol, but I do tea (both black & green and chamomile) coffee, apparently they are ok and actually good. I find since I don't have my wine I look for sugar elsewhere and dark chocolate over 85% does the trick, you will only have a little bit) I stopped smoking 4 years ago so don't have to worry there. Had a very pressurised high stressed job but have reduced hours and it's working great. My Lft's are slowly going back to normal.

    Paula - don't be too worried about having it for 6 years (possibly) my specialist told me I probably have it a good few years but with no symphtoms they don't really have anything to treat so it doesn't follow that you'd have been on urso any sooner and indeed if it would have made any difference. I just feel blessed that it been found now and I can be monitored.

    Happy Sunday everyone, enjoy. Lisa

  • lol... as I said, one of my symptoms is a confused and fuzzy head! Jeremy Kyle doesn't require any concentration and it also gets me riled so I know that I am still capable of feeling a passionate rage.

    My current dream is to do my MSc dissertation on the twisted views that JK expresses and reinforces about social problems and vulnerability - and all with a veneer of 'helping'

  • Hi there

    I was diagnosed in September 2009 - 3 years ago and was devastated, scared, angry etc. Today I hardly ever think about having PBC in a negative way.

    I have adapted to my condition and pace myself with the tiredness. I am very very house proud but have learnt that I can't do it all now. I have 2 teenage boys aged 18 and 19 who also leave the a trail of mess behind them wherever they go. That's normal teenage behaviour. Both mine will be gone in a couple of weeks to uni and I too will miss them like crazy, their mess included.

    Since my diagnosis, I have learnt to look at things in a positive way and now adopt a positive mental attitude towards all areas of my life. It has changed me as a person but I am now a much better person for it. I will still have a glass of Guiness once in a while, a glass of sherry at Christmas and an Irish coffee after a meal out if I fancy one. My consultant said it is ok. I don;t miss alcohol at all. I still go out and socialise, I am a regular attender at the pub quiz. I drink either non-alcoholic lager or water. Its all about adapting to a new lifestyle that works for you.

    I have met many new friends with the same condition. Indeed one of my friends had a liver transplant 4 weeks ago. She is doing really well and is in good spirits. There is another lady in the group who had a transplant a few years ago and is also doing well. Obviously they still have PBC and at present there is no cure, but the URSO and transplant are there for treatment. My consultant said it is highly unlikely I will die from PBC, that I have probably had it for about 20 years and that with regular monitoring I should be able to lead a fairly normal life.

    It is difficult to cope with at first, but once you realise that you can't change things and start to accept things as they are, you will start to feel better. We are all different and that is why sites such as this one are essential to us. We can ask questions, express our fears and feel supported as well as support others.

    We all have good days and bad days just like everyone else - but we are here for each other . Hope you start to feel better soon, keep smiling, it really does help you feel better.

  • Thank you, love to hear such positive words. Keep smiling.

  • If you haven't already done so get in touch with the PBC Foundation in Edinburgh. They are a great source of up to date information. Try and stay positive and pace yourself. It does help a lot and remember we don't have to be supermum. Take care. X

  • Hi all,I'm 45 and I was diagnosed in feb 12 after having my gallbladder removed in nov 11 then feeling dead! Now on and I think I feel slightly better now than what I did,if I could remember !!!!

    I had been going to my doctors for at least 4/5 years feeling I'll or just deflated all of the time! And the itching was and is still intense like insects under your skin! And feeling like rubbish and the tiredness is extreme upset tummys all the time. The list could go on and on.

    I thought it was age being over 40 menopausal but hormones ok, running my own hair salon and flying round like a a headless chicken most of the time, 2 boys over 20, husband extending our house very manic times. When first diagnosed I felt like angry, tearful scared but this site has been amazing and helped me cope with coming to terms with this horrible disease . I smoke andi still drink sometimes and my bloods are Brill. I'm a lucky lady at the moment so I try and ignore this and just carry on as normal but rest on sunday!!!!! Sleep and never feel guilty for feeling exhausted just accept it and rest if you can and enjoy your energy times when how very rare they may come .

  • Hi

    I have been diagnosed about 9 years, and my heart goes out to you when first diagnosed - some of the old out of date stuff on the internet is scary stuff - stick to this site and the Pbc edinburgh site - I don't know where you are based but they do lots of meetings in fairly central places all over the UK.. Hydration is key in this illness and I was advised to eat 5 small meals rather than 3 big ones a day, gives the body a gentler time. I personally find anything high fat gives me grief, but I am also Coeliac so got two things giving the gut a challenge there. The weird thing about the tiredness is it doesn't always relate to what you have done and that takes a bit of getting used to as you feel exhausted for apparently no reason. Always get your doc to keep on top of your iron, folic and B12 numbers and keep up your calcium intake and vitamin d to keep your bones healthy. My children were young when I was first ill and I know the challenges that presents when you just want to sleep at the most inopportune time - If I could only give you one bit of advice it would be to surround yourself with positive people who understand or are willing to learn to understand your condition and willing to give you the help, practical and otherwise that you will need and ignore the ones who can't see this sometimes invisible disease - keep strong. My mum had PBC also and lived to 82 and managed very well till the very end - Docs will often tell you you are more likely to die with PBC than of it. Take care x

  • Hi paula, have pbc 3yrs now the hardest part was comen to terms with it, my mam died 11yrs ago from it, no hope for her she was dtx to late, on 6 urso and 2 calcium a day had to give up work wasnt able for it any more, after sayen that i had to be in work for 6 in the morning, best thing i ever did thats just me, my gp is great my liver doc. is a joke, youll figure out whats what by listening to your body, tgere are pbc sites on facebook aswell there private and a great help aswell, the more info you have the better, try not to fixate on there bein no crue i did that and it just freaks you out, i also take lopronal for mussle and joint pain find it wonderful over the counter in the chemist, when i would be out for dinner, lunch what ever i would hide my pill box and nerley be under the table taken my tbs. now i dont care, iv an illness and need them thats that, when im felen like crap thats hard cause on the outside i look grand, share what you find with your family and friends so as they can understand cause some people just dont get it, there is great suport on this site and the facebook, youll be okey when you get your head a round it Ann

  • Hi Ya Everyone,

    I took a few weeks to digest the fact that ive got this PBC and have now accepted it.

    I have just read your comments and I must say they have made me feel a whole lot better and not so alone on this plite.

    So glad im not the only one who needs so much sleep, I was begining to think I had something else as well as PBC.

    Im too going to have to try to give up smoking, its so hard because I do enjoy my ciggies, but I have tried the Electronic Ciggies and they are brilliant, any of you trying to give up smoking have a look at Vapourlites.com

    So much cheaper too.

    I dont think ive experienced the 'Itch' yet, sometimes I have had itchy legs during the day for about 5mins, although when I scratch them I leave bruises, but dont have any probs at night.

    Have also been told by the Doc I have a high reading of some kind of Enzime, the name was too long to remember.

    Thank you all so much for making me feel so much better and not alone.

    Paula

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