Did everyone have as much trouble getting a definitive diagnosis as I am having?

I've had two biopsies. The first was inconclusive and the second stated AIH, with features of PBC and sclerosing cholangitis. My consultant retired and have just seen my new one (gastro). Blood tests (yet again) because "something else might be causing tiredness." Arghhh!!! The first biopsy evidently showed a massive inflammation of the liver which was controlled by the steroids. I am currently on URSO, half a stone fatter, have no itching or jaundice. However the fatigue is terrible and am getting quite breathless. My whole body seems to tingle and even my eyeballs ache. I couldn't even get off the settee on Sat to get my son a drink! Sooo sorry to sound depressed, but just feel as if I am going round in circles. Any advice would be appreciated so much. xx

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  • Hello SamT

    I got my diagnosis from a liver consultant not a gastrologist. I had to ask my doctor to refer me as he at first discussed my syptoms with a Gastro by E-Mail which i was not happy with. After seeing the liver cons I was put on Urso Had colonoscopy and bone density scan. Like you the weight has gone on and breathlessness has become an issue i beleive this to be because most of the w eight gain is upper abdomen. Fatigue is also very dibbilitating and very hard to all of my work collegues. I used to be able to be on the go all day. I hope this may help let you know you are not alone on this journey Take Care x x

  • My specialist is a gastroenterologist with a special interest in hepatogy (liver). I had a biopsy which confirmed PBC (no mention of AIH) whereas my blood indicated AIH therefore I was diagnosed with AIH/PBC Overlap Syndrome. On steroids, immunosuppressants (for AIH) & Urso (for PBC). Get in contact with the PBC Foundation in Edinburgh. They are a great source of info and support. Good luck. X

  • I was seen by a Consultant Physician & Gastroenterologist very soon after my Dr had a suspicion of what my problem was. I had a liver scan and then a biopsy for confirmation. This was over ten years ago and PBC knowledge for the lay person was scarce and scary. It is better today.

  • I go to a gastroenterologist now, at first i was told I may have fatty liver, then was interrogated about drinking as they thought alcoholic liver ( I don't drink very much ) then i was told I had Lymphoma and had to have a 38 to 40 stitch biopsy, then i was told I had PBC after a liver biopsy and we can't cure it ( I felt like I was told to go sit in a corner some place and rot) Also i am the other way to you as I keep loosing weight and what is even stranger is I have stopped smoking as well.

  • Hi Sam,

    Firstly I will try to take one point at a time....

    From what i was told, diagnosis of PBC is usually confirmed by the Presence of AMA (antimitrochondrial Antibody) in your blood test, Changes consistent with PBC can be seen on a liver biopsy but many specialist no longer do biopsies to confirm PBC, and rely solely on the presence of AMA. Maybe you could ask your doctor about this? Whether your blood showed this?

    I was under the impression that people do not get both PBC and PSC so am not sure about this bit. A number of us however have AIH/ PBC crossover . PBC is where autoimmunity in the body causes the cells of the small bile duct of the liver to be seen as foreign tissue matter, the body then tries to fight it off, this causes inflammation, fibrosis and can ultimately cause chirrosis (scarring) AIH is a very similar process but instead of the cells of the small bile duct, the liver tissue as a whole is seen as foregin tissue and attacked by the body. Apparently when the docs look at the cells on slides the different conditions create different cells changes, but many people say it depends where the smaples are taken from as to what cells are collected.

    As for fatigue, it is on of the problems that many people with PBC complain of, and one conditon that can raely be understood by those who don't have it, even those who have nursed family and friends. The degree of fatigue isnt always consistent with the severity of illness and this is not understood by specialists.

    The PBC foundation have written some great articles on fatigue and how to manage day to day activity, if you dont have back copies of the foundations magazines, it might be useful if you ring u the PBC Foundation offices and ask them their if they could locate a copy of the article for you. I believe the last one was written by dr george Mells a Hepatologist who is involved with a lot of PBC research, and I found it really useful. There is also a PBC Compendium which is free to all UK Foundation members, this is full of good information for those learning about PBC and how to live with the condition.

    As for feeling depressed, this is of course common, it is scary to be given incomplete information about a disease that is not fully understood, but I must tell you that although you might hear many horror stories about PBC, many of us are living really good lives, and we are managing our symptoms well... there IS life after PBC. Remember also that depression itself can cause fatigue symptoms so it might be a mixture of things.

    defintely join the foundation if you havent already, write any questions you have, and give them a ring. I am sure you will feel better when you have some more solid information about what is happeneing to you. hugs....

  • Thank you so much for this lovely detailed answer. I am a member of the Foundation and am wading through their folder now. It is fantastic. Your final paragraph really gave me a lift. I have also copied your comments to write as questions for my next consult and hopefully will understand more then. x

  • Hello SamT,

    My Gastro Doc. says it's a very difficult diagnosis to make. Why, I don't understand because ~ The US Government of Health & Human Services has a weirdly-named website called National Digestive Diseases Information Clearinghouse (NDDIC) It states that a positive AMA test and two Alkaline Phosphatase (AK) tests, taken at least 6 months apart, that reveal abnormally elevated liver enzymes can be a diagnosis for PBC. It states that a biopsy may reveal PBC but may not reveal anything.

    I wouldn't recommend obtaining health information from the government but, maybe, they got this one right. Any other reason that a AMA test would be positive except for PBC? Please tell me that there is!

    Also, the Mayo Clinic website was recommended by my doctor as having good PBC information. Best of luck to you, take care.

  • Thanks for this xx

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