Good morning your lovely lot hope your all well just dome advice please I now got little spider Webb like spots on my chest and my eyes are a little yellow been doctors and my doctor spoke to liver speaclist he opened up my med notes and basically said to my doctor they suspect autoimmune diease which surprised my doctor as normally they dnt really say stuff like that I've had a load of bloods again and should be with liver doctor Monday when I go for my appointment he sldo told my doctor that I should expect to be there for a while as I'm having another scan seeing the doctor and will More then likely have a liver biopsy plus because I have rash and my eyes are little yellow my doctor said be prepared for a stay in hospital as I might need so treatment pretty straight away xx any opinions would help as my minds gone in over time x

10 Replies

  • Hi Marie, it might be as they have suggested you have an auto-immune liver disease and of these there are a few such as Auto-Immune Hepatitis, Primary Biliary Cholangitis, Primary Schlerosing Cholangitis.

    A liver biopsy would usually be needed to look at what is going on at a cellular level within the liver - looking at just which bits of the liver your immune system has taken a dislike to. For most folks this is a simple and relatively pain free procedure and the most simple kind is where they pass a small needle through your side (site of injection is numbed with a local anaesthetic) and take some samples of liver tissue for analysis. You then normally have to lie still for a few hours to be monitored and ensure there has been no internal bleeding.

    If your liver inflammation numbers are currently a bit haywire and you are showing some symptoms as you describe then they make keep you in as doctor has suggested for more tests and perhaps to start you on some treatments.

    For AIH this would usually be a high dose of steroids to start and this should hopefully calm down the inflammation to stop further damage. If it is AIH then they will normally gradually taper down steroids and replace with an immunosuppressant drug which will keep your immune cells in check and stop them attacking your liver. Folks can live for many, many years with controlled Auto-Immune Illnesses.

    When my hubby first presented at hospital he was kept in for 3 weeks but that was due to him having had an episode of late stage cirrhosis symptoms and needed blood transfusions and all sorts. He had a biopsy but it took 8+ weeks to get the results and his were inconclusisve though we were told he had an auto-immune disease of the liver which they could tell due to the presence of some 'rogue antibodies'. He's subsequently had further biopsies and in his case they say he has 'burned out auto-immune hepatitis' which had already lead to cirrhosis before discovery.

    The important thing is each person's liver disease is different, even people with the same condition present totally differently so they need to get to the bottom of what is going on with you & your liver and then establish the correct medicinal regime going forward to look after your liver. There isn't a one treatment suits all tablet that doctor can just prescribe so it sounds like docs are doing exactly the right things in referring you to hospital. BE IN CONTROL of your own condition. ASK questions, don't be afraid to. This is your health and you need to know that all is being done that can be. Write down any questions as they come up and make sure you ask them.

    I am sure all will become clearer and you can get a bit calmer with it all after a good chat with your liver specialist. Stress isn't good for auto-immune conditions so try to stay calmer.

    Wishing you all the luck in the world and some clear answers soon.

    Katie x

  • Thank you for reply Kate can people live a normal life with a autoimmune diease of the liver I'm scared I'm going to die and not see my babies grow up its a very scary at the moment xxx

  • Many of the posters on the Auto-Immune Hepatitis page have had the condition for many, many years. Different people get different results from the medication and some live near normal lives in a drug induced remission. Some have issues with fatigue and energy levels & some folks do get so poorly that they require transplant.

    Until you know exactly which auto-immune condition you perhaps have and have had a good discussion with specialists as to the current health state of your liver I wouldn't go thinking the worst. Auto-Immune conditons can be controlled with medication and IF your condition leads to a need for transplant there is that option.

    Once you have a definite diagnosis then there are lots of support groups for the specific conditions and you'd be able to get guidance from folks who've gone through what you currently are.

    Katie x

  • Sorry to hear that but are they doing tests for your liver.sounds like yellow eyes is a sign of you drink.

  • I dnt drink I've been hospital to had scan fibro scan today showed little inflammation he has took 10 tubes of blood and said he will see me in 3 weeks thinks autoimmune hep depends on blood work or it very early stage he said left untreated in 10 to 15 years my liver will have cirrhosis he said no need for another ultrasound scan as the one was clear Nov seeing the the professor again in 3 weeks he said if he isnt happy with blood he will call and will go in for treatmentx

  • What hospital are you under Marie? Sounds like they are on the ball.

    All the best, Katie

  • Birmingham Queen Elizabeth hospital top liver team so they say x

  • If you are under Professor Gideon Hirschfield at Birmingham QE then you are under probably the best auto-immune specialist doctor in the UK. He'll get you sorted. x

  • Yes pro Hirschfield professor neuberger is whom I seen Monday x

  • The little red dots are called spider novuli , they are harmless and you can get in clusters or on their own. The are harmless and are part of the liver disease. I have over twenty , they look like red moles.

You may also like...