confirmed pbc????

Hi i phoned the pbc foundation and ask about information to be sent out to be to understand pbc and got told i could only have a booklet at the mo as i haven't had a doctor say that i do indeed have pbc. I said that they are still looking in to it but do have a ama m2... i asked why and they said just in-case it is something else. i am a little confused really. all i want to find out was about normal liver test and what they mean..

3 Replies

  • Hello Melbourne,

    I am so sorry to see that you get beaten up so much by the whole situation. However, what is it what you exactly like to know? I thought that you said the blood tests they have done on you came back normal, which means they were within the accepted range. The different blood tests just help the doctors to get a better picture of what is happening in your liver and all these tests have to be looked at in conjunction with other investigations and how you are clinically.

    I don't know which area in the UK you are coming from, but in general they would give you an appointment within 6 to 8 weeks. Yes, you can have PBC just with an positive ama.

    Well, if your synthetic liver function (LFT's) are all normal and your liver US is normal that's something positive to look at.

    I don't know what your ama - titer was like, but depending on it the liver specialist may would like to do some more investigations.

    And yes, there are some other illnesses associated with positive ama, but it's mostly PBC.

    I only got diagnosed a few month back and was as terrified as you were. I am a single mom with a teenage boy and I just was so scared. However, I had very high ama titer and very high LFT's but normal bilirubin. I have also been unwell for several weeks and had lots of investigations during this time and we found that I have already significant scarring of the liver. The damage of my liver is already there and I am very much aware that I can't change that. However, I feel very good at present, I eat healthy and started exercising again. The most important thing is to stay positive.

    I do understand that the whole situation is very worrying for you, but why don't you try to see it from a different angle whilst waiting for your liver appointment? As I mentioned already earlier, why don't you tell yourself - yes, I do have a positive ama, which indicates that I possibly have a liver problem. But actually, I do feel well, my blood tests are normal, my US was normal so hey :), that's pretty good and means "IF" I should have PBC I am a very early diagnosis - which is fab.

  • What a great post good on u, I am still waiting to see a specialist have to wait till end of July.. Was going thru hell but found the upset just to exhausting and did feel fatigued .. I have no symptoms high titre and AMA positive figure I have PBC.. But I am living everyday positive and getting on with my wonderful life just figured its a waste of energy being upset all day every day. Until I see the spec am staying calm .. Do hope u find ur answers soon Melbourne hey I live in Sydney ..

  • Hello.

    I presume then melbourne you are saying as I interpret it that your bloods are coming up normal and you do have the AMAs?

    If so then it is looking pretty good at the moment I'd say. I presented to a doctor in 2010 with itching and fatigue at the time (latter left me long since) and on checking the bloods, it was found my LFTs were abnormal. Over several months they just kept going up a few notches as in elevating more and more.

    Now had I not have started itching I'd not have gone to see a doctor in the first place so wouldn't have known I had PBC (I was diagnosed via the AMA).

    At present things are looking pretty good as I have stated so what I'd do is to try to keep even healthier, try get on with life and as you didn't state how you ended up at the doctor nor if you have any symptons, then if you are what is known as currently asymptomatic, you may never go on to progress with PBC IF you were to have it.

    With regards to the bloods tests and what they all mean, what they are, did you get a print-out from your doctor? I get mine but over time I've started to glance and then put them away. I was informed for someone with PBC my bloods are considered in a normal range so I can't see why keep worrying. Know hard but if I didn't itch at night then I'd not know I had PBC at all.

    If you can get a print-out of the bloods then it should show you on there what is considered normal range and you will know at a glance. If you want to go into it a bit more in depth as what they all are, get a good library book . Meanwhile, if you can think of anything to ask you doctor when you return, jot it down so you don't forget at the time. I am right in saying that if you have tested for AMAs then you are going to be having blood tests at intervals to keep a check?

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