Newbie here

Hi, I had been having lots of trouble with bile build up, pain and high LFT's I originally had a stone so they removed my bile duct but my LFT's were getting higher and I had a lot of pain, they thought I had another stone stuck but an MRI ruled this out, I have Amm in my bloods so my consultant has written a letter to my go to say it's PBC but I haven't seen him yet for my consolation, I'm not sure if I have this as I don't have the itching, I do feel very very tired out to the point of wanting to collapse and the brain dead moments and fluid build up in the tummy, pains in hips and my legs kill at night, waking up walking like a zombie in the mornings as they are so stiff but not sure if these are signs of PBC or not, also suffer with bile build up in the tummy which is very uncomfortable and quite painful along with the feeling of burning up inside, are these signs or could it just be something else? And is there anything I can do to help relieve these symptoms? Thank you

5 Replies

  • Until you mentioned it I too have had these hip, leg, back, and rib pains for years. I was recently diagnosed with osteoporisis and assumed it was that however shortly after was then told I have PBC, now taking the med for that. Will not know if the med works until a few more months, just started on it this week. Just grateful so far no side effects. Hang in there you have found a great place to learn more.


  • Hello Yvonnejulie.

    Has a doctor told you that you are experiencing 'bile build up' as you posted? I know that in any condition that causes a build up of toxins we can have larger tummies and bilirubin can then be found rising in the blood. (We can also have bilirubin in the urine apparently.)

    With any liver disorder symptons can be pretty much the same and pruritis (or itching) tends to be a common sympton along with fatigue. Itching is thought to be used bile that the system is struggling to dispense or recycle as the liver can do this normally so the salts are in the bloodstream. My theory is that the used bile travelling in the bloodstream causes us to itch any place on the body as it leeches out via the skin so we can rid ourselves of this toxin substance.

    I think until you see a doctor it might be best not swinging towards one particular condition though it could well be PBC if certain antibodies (known for short as AMAs) were found in your blood test. Personally I do not like to speculate. I stumbled across PBC in a library text book months before being informed I had PBC in 2010. I never mentioned to the GP and only asked the consultant on my first appointment when he said he would start with some antibodies blood checks first where I said was one to check if I had PBC to which he said yes and then asked how I'd heard about PBC.

    The only advice I can give to you is to try to eat as healthily as possible at present, cutting out certain chemicals and food additives. Eat quality over quantity as in my view if we try to keep as healthy as possible it might just hold back us developing anything else and perhaps might just help PBC some way. I know when I altered my diet to make it to me even better during 2010 before I was informed I had PBC (December 2010) I noticed on my blood results just after diagnosis that the ones I had taken just prior to being diagnosed with PBC my LFTs had actually come down a way of their own naturally and without any urso that I started December 2010 due to PBC diagnosis.

  • No, I can feel it in my tummy which can cause a great discomfort then I get sick and go really hot, once I'm sick and bring up bile it normally settles back down again

  • Should say gall bladder removed not my bile duct! Having a mashy brain day today :-(

  • Not everyone gets itching either, i have PBC and have never had this symptom x

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