Newly diagnosed

& have found this forum so useful since I was diagnosed with PBC at the beginning of July. So how did my diagnosis come about? A routine blood test about 8yrs ago showed some changes in the LFT specifically the Gamma GT. Needless to say when I was called in to see the GP to discuss the results I was asked how much alcohol I drank... he was a bit speechless when I told him I didn't drink alcohol! I was sent for an ultrasound scan & that showed a healthy liver, etc. About that time my thyroid was starting to become underactive, although the levels weren't quite at the point where I needed treatment.

Shortly after the scan I then moved to a different area which meant a change in GP. He referred me to gastroenterology, who I think did every blood test possible & none of them showed any abnormalities. A review appointment a year later still didn't show any abnormalities apart from the raised GP. At that appt, the possibility of a liver biopsy was mentioned if the Gamma GT continued to increase. 5 yrs of 6 mthly LFTs the GGT increased & when I was asked to return 3 wks later for a repeat blood the GGT had increased even further, this lead to a referral for a biopsy.

Saw the specialist in April who thought I might have an autoimmune condition - underactive thyroid, tested positive to antibodies & a family history of autoimmune probs. I also had a fibroscan carried out which showed no damage to the liver. Biopsy was carried out at the end of May & got the results at the beginning of July, I think I went round in a haze for the next couple of weeks!

Specialist informed be that I was at the early stages of the condition & not to worry to much about cirrhosis as that is rare. I was told about the PBC website, suggested I do some internet research & handed a leaflet from the British Liver Foundation. I was given a letter for my GP asking to prescribe me Urso 500mg twice a day & I started taking that the following week

Yes, it was a relief to find out there was something wrong with my liver, but shocked to read in the leaflet I was given that studies on Urso failed to show any direct impact on survival rates but may help keep people alive for longer. WHAT!!!!!! I hadn't thought I might have something that could kill me.

That was then....now I keep reminding myself that I am in the early stages & I'm relatively symptom free - some R. sided abdo discomfort & mild itching. I do become extremely tired at times & have some aches & pains. However I do have an underactive thyroid, pre-menopausal & suffer from depression. So how I feel could be down to ANYTHING! I hope my GP's up to the challenge of me appearing in the future complaining of various symptoms & trying to figure out between the 2 of us what it might be

The PBC website & forum have been great & I'm so pleased that they've been there over the past few weeks. Keep posting everyone, it really is good to hear everyone's experiences :-)

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  • Welcome aboard Vicky, your story sounds like mine. In 1987 my GGT was elevated, by 1993 my Alkaline Phosphates were also. Finally in 97 a dr., sent me to a GI dr. who did a biopsy, but could only say it might be the early stages of three different diseases. PBC was one. He didn't have me to follow up with him or anything.

    Finally with years of seeing the ALK go up down, a pain clinic dr. pushed my PC care Dr. to investigate. He sent me to another GI. This dr. did another biopsy in 2003, sent the results to the Mayo clinic, and they confirmed I had PBC stage 2.

    I fully be the Usodiol slows down the progression. I've used it now for 10 yrs, and my liver looks fine, has no scaring or enlargement as of yet. I do have fatigue. But I'm 65 yrs old with a lot of other problems. I did have itching, but it has gone away for the last few months. You will be alright! I'm sure you will have many years ahead of you.

  • Hi Vicky welcome to the site now u know u are not alone. I am 42 was diagnosed with PBC in 2002 after having horrendous itch, joint pains and fatigue for a year prior to that. I found this site to be my lifesaver last year when I had had another horrendous year much like the one before I was diagnosed. Happy to say now though am doing well and have stopped worrying and just baically live my life to the best I can and try as much as possible to forget about having PBC though bit tricky what with the itch being part of my everyday life! But I dont let it stop me. I am still working albeit part=time and am a mum of two a 6yr old boy and a 17yr old girl and have a wonderful fiance all of which keeps me busy. So try not to worry just live your life as fully as you can. Take care.

  • Hi Vicky

    yes it is all rather daunting but I am sure as time goes on we will settle. 8 too am a newcomer only diagnosed 3 weeks ago and have had the biopsy. Will find out the extent of damage next week and will start on the Urso. I have known for quite a while that I wasn't feeling quite right but have found this site so helpful reading other peoples stories and thinking "I have that" or "no haven't got that". I think the most frustrating thing is there is no set symptoms and everybody is different. I live in Australia and have to say my GP who has been excellent in getting me checked out raised his eyebrows as if to say "What the!!" It is very new to me and a little scary but I am going to make the most of it. Have far too much to accomplish. I am thinking of getting help with the food side of things and see how I go.

    again welcome and I look forward to reading how you are getting on.

  • Hiya Vicky.

    My start of PBC in 2010 was itching. I didn't think anything about fatigue at the time due to overly-working.

    I had abnormal LFTs that were slowly climbing for awhile during that year and end Oct 2010 I had the AMA blood test and that gave the diagnose of PBC. Started urso Dec 2010.

    So mine was probably straight-forward in that respect of getting a diagnose of PBC.

    Urso is considered contraversial in that for some it works, others it might not. For some lucky on urso apparently PBC can simply halt and remain so, a sort of remissive state (tho' damage started won't go away) but once you have PBC you have PBC for life. It's said that most PBC patients die with it but it is something else that they have died with.

    The only symptons I have is itching, night-time. Not nice but as long as that is all I have then I can get by with that. IT is tolerable is the itching, just about. The fatigue long since left me as I made life changes prior to diagnose.

    I tend to find it is better to get up every day and challenge it. I'd not know I had PBC if I didn't itch. I only get reminded of it when I take the urso and I itch later at night. I'm 50 next year by the way and intend to try to keep myself as active as possible. I did make a few more dietary changes and avoid certain things like MSG and artificial sweeteners in yogurts, drinks, etc. I was never much of a drinker so alcohol abstinence does not bother me at all (tho' it seems to bother others!).

  • Hi Peridot was wondering if you could share your life changes and dietary tips,advice would be grateful x

  • Hello. Thanks for asking. I will be back in a short while, been on here long enough, pressing things to do. Will post my reply at the end of this particular posting.

  • Hello everyone, especially Universal44.

    With regards to the recent request about dietary tips, life changes and tips and possibly other things (!), hope I can make a difference as well as helping, like others have helped me, in the battle against our PBC.

    I know one thing, after being diagnosed it can take I'd say around 2 and half years to start really feeling the difference in yourself. Taking urso and omitting certain things from your life doesn't just happen in a short space of time in all honesty I believe.

    I don't go in for the staging of PBC at all, put that quite out of mind as I have come to think that with PBC anything is possible either way. I did have the words 'first stage' and also 'early stage' dropped in at the beginning of diagnosis (Dec 2010) and at the time it seemed like a bit of relief but then with a bit more time and you begin to realise that you have something that is never going to go away, seems that bit different. I did used to kid myself that if the itching vanished and I felt ok once again as in asymptomatic then I didnt' have the PBC and it would have gone away. But it's not going to happen. I know now I might become asymptomatic as I really only have the itch at night still but PBC wsill still be with me.

    I was lucky in that back in early 2010 when I started itching I had remarried the year before and my new husband had a pretty good job. He knew my background as he was in the army when I originally wrote to him in the mid-1990s when he advertised for penpals as he was based overseas. Only took us 13yrs to meet up in 2008! I suffered badly with fatigue during 2010 but put that down to working in a demanding full-time job. Finally getting a holiday away from work July 2010 after working pretty solidly for 7 months without a break (my full-time colleague was on sick leave so I had to fill in for her), it was my husband who suggested I quit my job on return from holiday. A debate ensued but I did just that on my return. I am lucky in that I still have a small income from my first husband as he died when our children were little.

    I quit my job and got begged to go back into voluntary work I had broke off from the year previously so I returned. I felt more at ease and could concentrate on trying to recover as I really did think right up until almost the end of 2010 (diagnose PBC) that my itching and fatigue were due to overwork.

    Though some of my family members do not understand PBC and not sure they ever will unless it became rather critical, I came to a decision I was going to live my life as I wanted from then on. Took my husband awhile to take it all seriously (one good reason to take a partner with you to the hospital and listen to the doctor), he started to sit up and take note, moreso when I had a few ups and downs with the bloods.

    I think you have to try to ignore having PBC even tho' that can be difficult when you are reminded each time you grab a pill or itch at night but take the good days as just that and then hope as I do that the next will be just as good. Doesn't work like that but you can always hope. About a year after I started on urso I stopped feeling fatigued but I put that down to a combination of not working (voluntary was a doddle but in a shop setting, it is the customers who can send you scatty at times!) and also slight changes to my diet.

    Fat for me is even more at a minimum these days. If I know I am going to have something for evening meal that does have a quantity of fat in it (eg on holiday recently a one-off bakery pie with new potatoes and peas) then I'll compensate earlier (or later) day with hardly any. Feel it does seem to work ok. I try to not have a lot of foods that contain certain additives like saccharin, aspartame, other artificial sweetners, MSG for eg. I think the quality of food matters now more than the quantity. I don't partake of much choc, if a bar of choc for eg., a couple of small squares will suffice. I try to make my own juice/smoothie daily to have (today we have juiced some fresh blackcurrants, apple and grapes) as I think that is somehow a good booster.

    Altho' I do eat more gluten-free foods these days I still eat certain products that do have gluten in them. No-one has told me not to eat certain things with PBC as I did ask the hospital consultant at the first consult after diagnose (he relayed to my GP the diagnosis and to prescribe urso). Hew never mentioned alcohol but maybe because I had said originally prior to diagnose how could I have a liver disease if I did when I was a rather rare social drinker. I've not had alcohol since my first abnormal LFT and that does not bother me at all.

    I think eating more natural foods seems better. I tend to do my own cooking so I know what is in it. Do not eat out very much these days. If we go out during the day anywhere (we do a lot of walking), tend to take a packed lunch along plus snack foods like shelled nuts, raisins and fruit. My husband adopts the same stance himself as he wants to keep himself fit so it is easy to do that together.

    I think it can be important with having PBC to try to keep your life simpler than it might have been and also keep it in a bit of a routine. For some reason I always find that when my husband and also son are at work during the week I eat at a certain time, nothing fussy but at the weekend when everyone is here and home, I tend to find I don't feel as good. Maybe it is the variation of what I do over the 2 days at weekend.

    I tend to cease eating after tea and after a certain time (ie 8p.m) I don't eat anything further until the following morning at breakfast (but I rise early anyway). I drink red tea from later afternoon as it is caffeine free as I think that minus caffeine from a certain period of time in the day it could perhaps help to aid sleep at night if you do itch. I've actually find by making this change this year, I have felt much better at night tho' I still have a bad night. I also do not go to sleep during the day, not because I think I shouldn't but simply because when I have done in the past (over 18 months ago now) I just cannot sleep at night so find it easier to keep on going during the day. After all if you can keep busy you do tend to then feel really tired come 9p.m. and beyond and can help to sleep if you are like me a night-time itcher.

    I'd love for anyone else to add their tips, advice, etc and between us we might just find something that might really help all of us. (I'd love to crack the itch lark!)

  • Hi,much appreciated that you took the time to sit down and send a fantastic respone.Iv took note and certainly plan to change my lifestyle accordingly.I definitely agree in the healthy eating plan as I notice if I eat a not so good lunch I tend to lag and loose concentration and recently I doze of,however if I stick to fruit and veg I'm able to carry on,not sure if its a digestive thing.

    As for the itch Iv learned to live with it,I don't know if its a calculated thought as I'm sure I read somewhere if the itch stops then its not a good sign.

    Sorry I'm still learning daily about PBC & im still very much naive so everything that's being put my way is very helpful and appreciated...

    All I can say is thank goodness for you all to be here to talk to :)))

  • Glad you enjoyed reading it, didn't realise how much I had done as did on a post-it note and then copied into site as sometimes finds it doesn't transmit.

    Just wanted to add a PS I've thought about from your mention of lunch, I've been for a long time someone who can eat a lot early morn and then for lunch but then taper of naturally by evening meal. So I wondered myself if I have been finding myself with not much in way of fatigue these days due to having a hearty breakfast (cereal and toast or plain biscuits, a tea and then a coffe - I only partake of 2 coffees per day, one caff one after breakfast, decaff around 5p.m) and then a decent lunch, less for tea.

    I think with the itch it has been said that regardless it's not an indicator of the condition. Some develop the itch (like me it was the first sign I had PBC) and others never do. I don't think about that. I theorise that if the itch suddenly stopped now it was more a case that my system had rebuilt itself adequately and I was dealing with what is thought to be bile normally once again (temporarily or permanently) but a blood test would then be a gauge.

  • Thanks everyone for your replies. It certainly seems that PBC effects people in different ways, suppose it shows that we're all still individuals. At least with the forum it will prepare me for what I could expect in the future.

  • Hi guys, I was diagnosed in 2008. My symptoms came on quite rapidly, I became fatigued, had energy drains every afternoon at work, would feel confused, feelings of weakness in my forearms and pain in my knees and thigh bones. I described those symptoms to the GP, she sent me to the nurse to take bloods and a week later asked me to go in and see her. She told me I have PBC, she brought my seat up to the desk next to her and brought up the patient information on PBC on Patient UK. She also told me about the PBC Foundation. Speaking to my specialist after that I realised in retrospect I had had PBC symptoms for many years and my specialist felt that to be the case. I don't know what stage I'm at but my bloods remain fine. My PBC specialists don't do biopsies to stage it because they say different areas of the liver can show different stages so its not a good indicator. I have learnt a lot from places like this and PBC UK on Facebook too and you guys are the best source of info and reassurance xxx

  • Hi Tessa,I'm exact same as you,all the same symptoms and I'm getting worried as everyday almost at work round about lunch time I'm falling asleep and yesterday on train I done the same and missed my stop and the pain in the joints and hands sometimes make me cry and I have a strong threshold.Hope you keep better best wishes.x

  • Hi universal, gentle hugs to you. I know how hard it is. Have they made reasonable adjustments for you at work? You are covered by the Equality Act and your employers are obliged by law to make reasonable adjustments for you. This should include things like a work station assessment, you could probably do with a soecialst chair for example, changes to hours eg reduction in hours, regular breaks, start and end times to avoid the rush hour etc. Best wishes xx

  • I doubt that would be possible,there is 3 of us doing a job that there once was 5 of us doing and it's a hard slog.Iv not told anyone except family.This appears to be an illness very few understand or recognise so I'm learning to adjust myself e.g going to bed when I get in from work....do you suggest I say to my employers or just carry on regardless x

  • Personally I would tell them. They have to make reasonable adjustments by law. Are you in a union? Do you work for a large organisation? X

  • So Tessa let me get this straight in my head so that I am clear,are you saying PBC is classed as a disability???

  • You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

    gov.uk/definition-of-disabi...

    I had a bad time at work and ended up taking my employers to tribunal. They settled out of court. You can claim DLA too xx

  • Oh gosh you have had a tough time.Hope you are ok x

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