Is there anybody else here from Perth & Kinross area of Scotland? I'm really not coping very well.. Exhausted all the time, can't sleep though,, hot sweats, extreme itching, agonising cramps in both feet and shins, pain under my right ribs, not just emotionally tired but physically can hardly put a foot in front of the other. Working full time and struggling with it. Had my 6 monthly hospital appointment yesterday and once again everything I brought up is apparently definitely not PBC.. It's my Fybromyalgia , my arthritis, my diabetes type 2... The only thing that he will agree is PBC is my itching. I feel like I'm slowly going mad and that people think I'm imagining everything. Is there such a thing in Scotland as a PBC specialist or are we stuck with Gastroentologists who claim to know and understand the disease?? I have told them yesterday that I won't be going back as I don't see the point when they keep saying nothing is my PBC... I think he told me last time I was 2nd stage,, but the only scan I had was for my lungs when they kept collapsing two years ago which was when I was diagnosed with this... Apparently that scan let them see that my liver looks fine,, never had a biopsy either,, so how can they stage me??
I'm really sorry for ranting, I've got to the stage where I'm writing notes to myself on what I need to do before I swallow all my pills and can't really think of any reasons not to...
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lennie9215
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Hello Lennie, I am sorry that your consultant takes this attitude I find fatigue the worst symptom I have and it is definitely a major symptom of pbc.Read this it summoned up how I feel with pbc, you are not alone.
I suggest you ring the pbc foundation they are really helpful and may be able to suggest a better consultant in Scotland.They can also tell you what tests etc you should have and when.
The fatigue is life changing and working full-time is hard can you get anyone to help you for example a cleaner or shopping delivered, using all your energy working is difficult try to save some energy for things you want to do, if there is anyone who can help you ask for help I have found people don't offer!!Over time you will find a way to live better with this but it does take time .I hope things improve. Jane.
Things will get better. Give yourself some time to get used to the diagnosis. It's so hard when you've already got other AI's you're contending with and now PBC. You probably know AI's run in packs. Did they do blood work that showed elevated liver enzymes as well as the AMA-M2 test? That's usually definitive for PBC.
Just take one step at a time. Do what you can. It's overwhelming, I understand, but slowly, eventually things will get better. ♥️♥️
Thank you everyone for your replies.. Do we have a 'legal' right to ask for a PBC specialist? My GP tells me my counts are higher and at my last consultant appointment they doubled my dose of Ursodeoxycholic acid so I'm now taking 1000mg daily ... As well as all my other meds.. And yet this guy tells me my counts are fine and my PBC is not responsible for anything. Can I just ask my GP for print out of my blood counts?
If you have not done so I would join the pbc foundation they support this site and the link to join is at the top of the page. Go to (about) to find the details. They have the most up to date information and if you give them a call, one of the advisors will be able to help. You are entitled to a print out of your bloods, and a second opinion. I myself have done both. But do give the advisors at the foundation a call.
please ask for a referral to a liver unit... think there is one in Edinburgh.... but lay it on thick.
are you on urso... if not i would be asking about that as it can slow the disease down.
sometimes we just have to kick off to get what we need.
can you do anything to reduce your hours... with all your difficulties you should try and cut down if finances allow.... speak to your GP about this side of things. best wishes cazer.
Yes, talk to the PBC Foundation - link at the top of this page, and ask their advisors (they are lovely ) for help. If you are on Urso, your medics have presumably already diagnosed PBC, but it is worth checking it all out, and get a copy of all your results, so you can see what has been noted and done - and what has not been noted. .
For a formal diagnosis of PBC you should have liver function tests (lfts) that are high in a way that is typical of PBC, and you may also have an autoimmune factor called AMA ( the sub factor AMA-M2 is typical of PBC). If both of these blood results are present, then that is enough for a diagnosis of PBC. An Ultrasound can rule out 'mass' scarring of the liver, which is rarely the case with new PBC ... if ever - now - as the drugs are so good. However, an ultrasound cannot diagnose (or not-diagnose) PBC: only indicate. For a diagnosis beyond the 2 blood tests I've mentioned (lfts and AMAs) a liver biopsy is needed.
Talk to the PBC F, get your results and if you feel you have been misdiagnosed or are not getting the right does of Urso, or are not responding to urso - then demand to see a PBC specialist. I live in Devon and went to see a PBC specialist in Birmingham - on the NHS, no charge except the transport - as my local consultant had misdiagnosed me - I only have AMAs, and no other factors or symptoms. My GP sent me with his blessing, as he knew I didn't have PBC, but I needed to be seen by a different consultant.
Hope this helps, but do talk to the PBC Foundation advisors.
I'll contact my GP on Monday to ask for copies of all my tests etc... I will wait to phone PBC foundation until I have the papers in my hand.. At least then I will actually have something definite to discuss.
Just knowing you are all here helps my state of mind a lot.
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