Update

Courtney1234
Courtney1234 Member Posts: 60
edited 21. Dec 2017, 03:35 in Living with Arthritis archive
Hi everyone

Thought I would post an update. So I had an appointment with the main rheumatologist at my local hospital on Tuesday after being referred to her by my usual rheumatologist. My lumbar spine MRI showed mild deterioration and fusion but nothing else major (horaaay!) However, the rheumatologist was very concerned how over the past year my liver function has been fluctuating, having a raised LFT in bloods then I would drop back within normal limits. Given that I also have positive anti-nuclear antibodies (ana) in my blood she thinks I may have a condition called Autoimmune hepatitis. Sometimes your liver can produce the ezymes which leak into muscle and will be testing me for this also. I don't have a lot of the symptoms for AIH but given the raised liver function she can't be sure.

This came abit of shock, and personally I'm hoping it is not this condition. She also did more bloods to test for other autoimmune disorders and giving the results of these bloods I may have to see a liver specialist. It has been a craaazy few days here, and I've got my fingers crossed it's good news and not bad.

Comments

  • Hobble
    Hobble Member Posts: 83
    edited 30. Nov -1, 00:00
    Understandably a shock for you, hope you don't have to wait too long for the results.

    Fingers crossed here for you

    Take care Hobble
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Thanks for the update, Courtney.

    I admit I've never heard of autoimmune hepatitis but I have come to realise that there are loads of autoimmune diseases most of which most people have never come across. How fortunate that your rheumatologist is so on the ball and doing so many tests. I hope the result will be a definite diagnosis of something as I think we all feel more comfortable when we know what we're up against. Please keep us in the loop.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    It is an autoimmune condition as same as any other it's your own body attacking itself, in this case it attacks the liver. It is obviously a very serious condition as it can cause liver failure if not treated quickly. I am going to phone rheumatology next week for an update as I can't sit around not knowing the results.
  • frogmorton
    frogmorton Member Posts: 30,032
    edited 30. Nov -1, 00:00
    Gosh Courtney my fingers are crossed for you.

    I wish I could help you not worry :?

    Love and ((()))

    Toni xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    At last we might have an answer - hoorah! I suspect there's a possibility that, for a little while, you might find yourself attending two departments, rheumatology and gastroenterology (I think that's the name). I did for a while when Enbrel tried to explode my liver. I hope you feel easier in yourself knowing the cause of the trouble, that can in itself be of great benefit. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi Courtney
    I do hope that the test results are good ..your liver is good at recovering so hopefully this is what will happen..fingers crossed for you ..
    Love
    Barbara
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    Thank you for your messages everyone. I phoned my rheumatology helpline and results aren't back as of yet-maybe they needed to be sent elsewhere.

    DD- ahh yes I know that feeling, I'm already between 2 specialists now (rheumatology and orthopaedic) so this will be a 3rd department to add to the appointment lists. I feel relieved as I'm a step closer to finding what's going on but also a little apprehensive at the same time as I know how serious this condition can be if not treated early enough.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Unfortunately medics rarely see our scan results as being as urgent as we do. On the plus side, they can be superquick when necessary so no news is usually good news. I hope that will be so for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Any news yet, Courtney?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    I'm awaiting a phone call from my GP so we can discuss results. I had an appointment with the nurse the other today for my b12 injection and what she could see (she doesn't really know much about bloods) my liver function was still high :cry:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Liver results can be astonishingly high but comparatively safe as long as you are under medical care and being monitored (which you are). I remember when mine hit the 600s thanks to one of the anti-TNFs and I mentioned my slight concern about this to the gastro; he laughed and said that was tiny compared to figures in the thousands which were his norm. You, however, are much younger than me and I can understand your concern - have some hugs. ((( ))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I hope the GP can help. Do you have regular B12 injections?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    Thank you DD. I just worry as I don't take any regular medication so there really isn't a route course to why this keep happening.

    Yes SW, I have b12 injections every 3 months as i have pericious anemia.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Ah, I see. I couldn't see it being connected with arthritis. Well, I wish you a speedy diagnosis.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I've finally decoded 'route course': root cause. Gotta love predictive text. :roll:

    The root cause of any illness is life. We have what we have, life is (supposedly) a gift but it's a gift that comes with no receipt, no guarantee, no certificate of safety. It's a gift which cannot be exchanged or returned; the fact the goods are faulty is neither here nor there. We are fortunate to live in an age where an increasing number of illnesses can be explained and treated, I am grateful for that, having survived asthma in the pre-inhaler days and now avoiding joint deformities thanks to the arthritis meds.

    My life depends upon regular medication, for me that's the norm and has been for forty six years (I cannot conceive living a life without it, how very odd that must be.) I was an ill young person, now I'm an ill middle-aged person and might be an ill old person. I cannot say with any truth that I have loved every minute but I can say that life is as good as I choose to make it - isn't everyone's? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    Sorry about that. That's modern phones for you haha. My GP phoned me Friday afternoon but unfortunately I was working and was unable to take the call. I phoned back and he was supposed to phone me after surgery finished Friday evening but he never did. So it means I will have to phone back up on Monday. I have finished my hydrotherapy sessions now and have an appointment with my physio on Wednesday so if I have no luck from my GP, I will ask him.

    christmas02
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hi everyone, bad news. Unfortunately I've been referred to the liver specialist for further treatment as my naughty liver isn't showing any signs of correcting itself. I've also been referred for an ultrasound scan of my liver (not more scans :roll: ) which I am currently waiting for an appointment for. Boy have I had enough :(
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I can understand why you feel like that about this (anyone would) but fundamentally it is a positive move. You need a specialist as your liver is obviously unhappy and the situation needs clear and informed understanding rather than the vague 'it might sort itself out'. The gastro is the one to give that information but of course it is a bind and a grind for you. ((( ))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben

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