Visit to the hepatologist

The hepatologist confirms the fibrosis which is better than the cirrhosis they first thought I had. The biopsy suggests autoimmune hepatitis but blood tests do not support it. Blood tests support PBC but biopsy was inconclusive. What? Anyway continuing with the Urso which seems to be improving my liver function tests and come back in 2 months. Keep an eye on it and see if the AIH turns up. I hope it doesn't.

Pam

26 Replies

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  • Did you have a smooth muscle titre blood test and igg

  • Smooth muscle came back negative. I don't see an igg

  • I hope that you do not have aih, is yur alt elevated

  • My alt was okay.

  • I hope I don't have it either. I'm 62. I don't know if I have the energy to fight it all. Jenny, you sound to me like you are going to kick its butt. I think you will.

  • The only symptoms that I have is from the meds. I did have a peeling in my scalp and fatigue some itching before diagnosis, I would also feel inflammation type feeling and nauseous before diagnosis. I was also going through menopause and severe stress, my finger nails also broke and chipped easily. I also lost the half moon shape in my finger nails. Who knows. Urso and prednisone cleared up a lot of my symptoms. My fatigue isn't nearly as bad as before diagnosis. I'm not so sure that I have the will to fight anything anymore. I went through to much with two of my daughters, just to many bullies and I took the high road where I should of dealt with it head on. Never ignore a bully. More jump in

  • You're going to kill that aih. I just know it. How old are you girls?

  • They are adults jpjx. I just have them everything that they wanted and didn't make them work or do chores then they became adults and they wanted the same. My husband wasn't much help. I had 3 daughters with 3 different dads and I tried to please everyone and then I couldn't please everyone. Life's a bitch and I'm going to die because I screwed up.

  • You're not screwed up. You only did the best you knew how.

  • Hang in there you did the best you could with the knowledge you had at the time. We all make mistakes. Take care of yourself.

  • Hi 4pjx__

    After more than 10 years after diagnosis I was recently screened for AIH which fortunately I do not have. I hope it will be the same for you. My biopsy, way back then, came back asymptomatic which basically in medical terms means "presenting no symptoms of disease" so from what I have gathered over the last 10 plus years is that PBC must be difficult to diagnose but it is good that we are generally put on URSO more or less straight away.

    hope all goes well for you

    best wishes

  • Thank you butterflyE. He said I have quite a few good years left on my liver. I hope he's right. The Urso seems to be helping. I just hope the numbers keep sliding down. This is a weird disease.

    Pam

  • What stage did he say that you are in

  • Stage 3

  • 4pjx my Dr made it clear to stay away from sugar, fat and carbs. He said that 10 years ago we were told no protein and no steak. He says that's not true today that we need to not follow rules from 10 years ago

  • My doctor said eat chicken, fish and beans. Stay away from red meats. I pretty much already do. No sugar? That's a sad one.

  • Hi butterflyEi was your AIH result from a biopsy? My last biopsy was inconclusive which seems to be common. My consultant can't confirm I have the overlap until another biopsy is done, and he won't do another until my ALT is over 120 which seems as I yo yo so much impossible to reach thank god, he wants to do it when it is high but if I ever get that high by the time I get to biopsy appointment the level will have dropped again, last time my levels were high was when I was on Azathiaprine which made me so I'll I came off them and I refuse to take immunos. So for the last 3 years I have been in stalemate

  • Hi Biddyb

    I saw a hepatologist for the first time in January this year after 5 years of just GP care. The hepatologist asked for a blood test, a gastroscopy and an ultrasound. I think AIH was ruled out via blood tests.

    My biopsy was done around 2006 but was on checked this year for AIH which fortunately I do not appear to have.

    Sorry not to be more help to you.

    best wishes

  • Wonderful fo you then if you don't have the AIH! Life is tough enough as is is without having all this auto immune stuff going on. Thanks for your reply

  • Your report sounds like mine. Something is definitely wrong but the various tests point to different things. I am taking Ursodiol and treating it as PBC. My liver function tests two weeks ago were in the normal range for the first time in many years. The doctor says that would indicate that my liver is not irritated at the moment. He suspects that I also have AIH but I really do not want to take the medicines required for that treatment and as long as the liver tests are showing in the normal range, he is not going to change what we're doing, for which I'm grateful. If I spend too much time thinking about it, I get frustrated and anxious that there are no definitive tests - so I choose to not dwell on it most of the time. I've got other things going on! My latest is trying to figure out why I seem to have allergies all of a sudden for the first time in my 67 years.

  • That makes three of us my condition sounds the same, like you I don't want to take immunos as I took them a couple of years ago and made me really ill. Sometimes I wonder if the consultants just follow a pattern and progress from PBC then ALT and don't expect patients to object to their way, picked on the wrong puppy with me. I feel sure that the 3 years on steroids were probably unnecessary as my biopsy and scans were inconclusive. The next guy I see in August may be more helpful I hope. I have already changed from Halifax hospital to one in Manchester to see the Heptalogist. Don't let them fob us off

  • Seems like the immunos make a lot of people sick. As if they are not sick enough already. I hope you have better luck with the next doctor.

    Pam

  • I've been on the Ursodiol about 5 weeks. My numbers are coming down but there's always that worry if they will come down enough. I do feel better though since I started the Ursodiol. Less tired. So, I'm thinking that it's working and I will get there. Good luck to you lityygirl, I hope you don't have AIH.

    Pam

  • You seem to be in the same place as I am, I was being treated with AIH overlap and given Steroids also vitamin to keep my calcium levels up as a precaution found out that my calcium was too high and told to stop taking the supplements straight away and reduce the steroids slowly which I finished in January, then they suspected Hyperparathyroidism now I am in the position of still not knowing if I have the overlap, also I am wondering if I even have PBC which was diagnosed in 2008. No one seems to be able to give me an answer, my symptoms are similar to so many other ailments. My liver biopsy was inconclusive my scan showed no damage apart from gall stones, which seems Ursofalk can cause, then again my nurse told me that Ursofalk is given to get rid of stones! Lots of questions to ask my Heptalogist next month, I am given to understand I will be having someone new so back to square one. Confused.com. Hope you get to the bottom of your queries.

  • Oh boy, this is some crazy illness. I guess it' s complicated and they don't really know what to do for us.

  • I think that is the REAL answer!

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