Today I went to see a new gastro.Dr. I really liked him and he spent time explaining PCB to me. He wants me on lot's of vitamins a healthy

Diet. No alcohol at all. ( that is not a problem.). I have to schedule a Liver Scan and a lot of blood work. I made an appointment to go back to see him in July. I am really happy I changed doctors. He acts like he cares! The other doctor made me feel like a number. He said because of my blood work he has no doubt I have PBC and he asked if I would want a liver biopsy to determine a stage or we could wait and maybe do that at a later date. I am happy about that! I really don't want a biopsy. So I feel pretty good and only hope I can stay that way for a while.

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  • Hi 2006,

    That sounds really good and positive. So pleased to hear that someone has found a supportive consultant who is interested in the condition and in overall health. Are you in the UK? It sounds like not the way you say 'you' have to schedule a liver scan.

    What exactly did your bloods say, and has he taken vitamin and mineral etc readings as well? I'm curious, as given that it seems so important in other autoimmune conditions to get certain nutrients right, I'm always surprised that there is not more emphasis on diet with PBC. Maybe you can tell us more about his advice and any other innovations. That would be so good. I seem to spend so much time reading other health sites to pick up general diet and health advice that might apply to autoimmunity - without really knowing if its appropriate.

  • Hello GrittyReads.

    You beat me to the reply I noticed.

    I was interested to read your mention of auto-immunity. I have spent the last 3yrs+ now trying to figure out why I developed a liver condition as I have never been a smoker (though grew up with 2 parents who did smoke), was a very infrequent drinker as never really bothered and always checked a lot of what I ate, no take-aways, fast foods, etc and usually as additive-free as possible. Plenty of fresh fruit and vegetables thrown in and then in 2010 I started itching.

    I've come to the conclusion that wondering how and why is something that I personally will not dwell on now. I think that everyone can be prone to something and that it may not be a case of the diet. I am convinced that PBC is due to other factors and that is either the environment or something that can be a toxin to us in ones who are prone to it. I am certain I developed PBC due to uptaking the hepatitis vaccinations when I went to work in a medical setting.

    Not everyone who has these vaccinations would go on to develop something like PBC as everyone has different immunity from certain things. Going back in time the plague is an example, not everyone got struck down with it.

    But I do find interesting as you have put it, to find out views from the medical profession as you never know one day where it might lead.

  • Hello 2006.

    Good to read that you have found a doctor who you feel confident with.

    Can I ask though in the doctor saying he wants you to take vitamins that you are actually deficient of certain ones? I agree with a healthy diet but I will draw the line at taking supplements myself unless absolutely necessary.

    I was never a big alcohol drinker myself and after my first abnormal LFT early 2010 pre-diagnose PBC I have never had any alcohol since, doesn't bother me (peoples' attitudes can though, "I'm sure just one wouldn't be a problem?").

    Are in the UK? Liver biopsy has never been mentioned to me by the consultant though my GP did mention it back in 2010 which I thought was a bit much. I am not interested in having a biopsy to be informed there is some stage of PBC myself, I am confident that with scans and the bloods it is pretty accurate a picture of how one is progressing with PBC. Plus why get the possibility of unnecessary worry from one when I think with a lot of things, "What you don't know..."

    You did state you were certain you had PBC via the doctor. Have you had the AMA (antibodies) blood test yet? That determined my diagnosis along with itching, fatigue and also the abnormal LFTs and GGT.

  • I'm interested in which vitamins he recommended, multi-vitamins? I know the best vitamins come from food but since we don't seem to absorb them well, it may be best to take them, although, I haven't yet since most of the ones I've seen in drugstores have unhealthy non-medicinal filler ingredients added to them.

  • PS What are your blood results, by the way. Just that on a second read through the comment that he 'has no doubt you have PBC' sounds a bit vague.

    Cheers,

    Gritty

  • Hi Gritty, my ALP was 542, my ALT was97, my AST was 68 and the Mitochondria antibody was 116.8. The Gastro said this was all positive for PBC.

  • Reading some of these it just shows how people and specialists differ. I have had no choice but to eat healthy else I would have spent all day in bed it's the only thing that has given me energy back. As for the booze, again I've had no choice cause drinking it cancels the next day or 2 out and that's when it's in moderation. I've also had no choice in the biopsy thing I have to have one and also just had a gastroscopy. And as for being told what my bloods are..... Not got a clue? I'm hoping that one if these days someone somewhere will just tell me what's actually going on. If I ask a question they look at me as if I haven't got a brain.

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