Still the unknown

Hi I sent a post a while a go regarding my unusual condition. In which my liver doesn't like my antibodies I produce when fighting an infection and shuts down. Well it doesn't have medical name because apparently the consultant is not sure what is causing it and only way to define this is by doing biopsy but apparently there is no point doing this until the liver shuts down again. 

My gripe is all the other bits I get with it doesn't seem to matter. The tiredness the itchiness (because apparently this is what is cause me to have urticaria). Not to mention the unknown. 

I'm sure I'm not the only one and there is a lot worse but I'm just wondering if I'm just being fobbed off or is this how it is sometimes. 

Thank you in advance. 

10 Replies

  • Are you seeing a Hepatologist.

    If not get a referral to your nearest Liver Transplant Unit  ASAP

  • Hi yes I've already seen one that's how I knew. But although very nice he didn't help very much and he just said the next stage to find out exactly what is going on is toa biopsy but he wants to do it when the liver is reacting and when this may happen well your guess is good as mine! 

  • You have a right to have copies of all letters and test results that your GP might have.  If they are recent there should be no problem or charge - or maybe just a photocopying charge - older ones might be more difficult and cost more.  Just if you have all the tests and the names on the problem antibody (ies) then you could post on here, and we might recognise the tests and antibodies from conditions folk on here are familiar with.

    Also, it might be a good idea to talk to the experts / advisors at the British Liver Trust (link to their site at the top of this page), especially once you have all the results and correspondence. 

    However, in the end the biopsy may well be the only way to get to the bottom of this, but the BLT people can advise.

    Do take care and do all you can to keep living your life and reducing stress, as that will help.

    Take care. xx

  • Hopefully the biopsy can give u the answers u need..  my symptoms of extreme itchiness (feel like ripping my feet off) extreme and extreme fatigue were related to PBC.  I had a biopsy done too.  The biopsy was fine and was over in seconds so don't worry about that.  I agree with what the others have said to request a copy of your blood work.  Particularly your antibody test.  Or at least ask what autoantibodies you tested positive for, their is a wealth of information on here from members of the group.  and certain antibodies are associated with certain conditions.  Best of luck with your biopsy results..  Most liver conditions nowadays are not a death sentence these days and there are great medications on the market.

  • I have primary biliary and have ana antibodies and my system also reacts badly when i get other bugs.when i was first really poorly i had glandular fever and my pbc went pretty crazy! Have they checked what auto antibodies you are making?the itch etc all seem very similar to pbc symptoms so maybe you could mention it to auto antibodies are there even when im not having a flare up.hope you get answer others say contact the liver foundation.

  • You don't say what your diagnosis is in your post – it will have a name (if only to let other health professionals know what your condition is).  My liver disease is described as Cryptogenic Cirrhosis (that is, of unknown cause) but consultants I have seen since diagnosis 11 years ago suspect that its original cause was an auto-immune response of some kind.  Crypotogenics make-up about 10% of all liver disease sufferers and have to live with the ignorance of what originally caused their illness and the inability to do anything specific (such as not drinking alcohol) to improve their health.  Because of the broad spectrum of those defined as cryptogenic with a wide range of possible causes research into this area is very limited since it is often funded by drug manufacturers looking for the next big money-maker.

    Living with the unknown outcome can be very difficult – but you can only reach a point of acceptance if you know what is wrong with you.  Keep asking questions relentlessly – if you feel fobbed-off, ask somebody else or request a change of doctor.

  • Hi the Dr said they consultant has actually given it a medical name. Which is why it's very difficult for me to make people understand. 

    All he said in the letter write up I have an allergic liver. And what he told me. 

    All my symptoms does seem to be pbc but he will not say yes or no until I have a biopsy but won't do this until I get really sick again. 

    I don't know really what to do. I'm just at lost really. I just don't really want to have to sit here and wait till I get really sick before I get an answer. Which could be 6 months could be 6 years. 

    Thank you for replying everyone. 

  • Four years ago I was very tired and I was slightly jaundice but because I hold my tan in the winter months, no one noticed the jaundice. I went to the hospital where I live (a local hospital) because I was not satisfied with their comments and because my liver enzymes where high I went to a well known hospital. I was admitted and in liver failure per the definition. I was diagnosed with autoimmune hepatitis. This disease has nothing to do with hepatitis infections. My body is constantly on attack. My body attacks everything as if a foreign substance. In return I attacked my liver. They caught it in time and I am on Imuran and have been in remission 2 years. I did not get a biopsy because no matter the results, this was the treatment. I suggest you get a second opinion. Waiting can cause you more problems.

  • Also I was constantly itchy and lost about 10 pounds and didn't want to eat. Sorry forgot to mention that.

  • Hi

    Like Newengland01, i had bad jaundice of unknown origin for 3 summers. Finally lfts so high, was told one which should have been a max of double figures was in thousands. Urgent hospitalisation.  Then Gastro man did ANA test = Auto immune hepatitis. I am on Azathioprine after Imuran got my liver back on track. It has been 14 years. I also have Lupus and other auto immune conditions, so it is wise to keep a wider open mind, in case, like me your immune system is annoying other systems or organs.  Read what you can. See Lupus uk site in this set of communities to read if there are crossover symptoms and general kind advice like here.

    There is nothing worse than not knowing.

    Love, take care


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