Anyone have symptoms like mine?

I have not been diagnosed yet, but my Dr thinks I may have it. I started itching on my hands and feet so bad I wanted to sand the off then I got very sick for a few weeks and my liver count was alert high AST 1400 and ALT 2300 and I had yellow skin and eyes, gray stool, very nauseous, & extremely fatigued. I felt better after a few weeks and had my blood tested again. My AST is now 87 and ALT went down to 162 but my M2 antibodies is at 50.2 and should be 0-20. I am feeling better no yellow, stool back to normal, nauseous sometimes and fatigue only when I go to work. The itching has stopped. But my dr wants to have a liver biopsy because of the M2 antibodies being high. Does this sound familiar to any one? It sounds like PBC but I don't know why I am starting to feel better and my liver test enzymes and going down. Please if anyone has any input I would love to here it.

26 Replies

oldestnewest
  • These do all sound lile a liver that was havomg a hard time

    When first ill my lfts were a thousand and something cant remember which.i had all those other symptoms you talk aboit and the itch in hands and feet keep me up all night.

    I was pregmant at the time so yhey thought it was possobly because of i that also had glandular fever

    Im waffling again but my point is the symptoms are common to a lot of different liver problems.

    As it was i a pretty severe eposode i would want to lnow what caused it even if i was better.my symptoms also calmed once g.fever had cleared up and i was no longer pregnant(hes now 17).

    Depending on the cause you may be able to have treatment e.g ursodeoxycholic a or something else if viral.might b wrong but think gallbladder/pancrease can also cause probs loke tjat.

    What are m2 antibodies???

    Ama s...anti mitochondrial antibodie are the ones they look for with pbc so ask to see a consult...gastro to start then hopefully a hepatologist(liver) specialist and of they still yhink liver disease have the biopsy so you can have correct treatment.good luck cazer.

  • My blood work described AMA as M2 antibodies. I don't have a gallbladder, it was removed 18 years ago. I would agree with the Dr if my symptoms and blood work hadn't gotten better but I quests I am looking for reasons it's not PBC. Thank you for your feedback.

  • If however it did turn oit to be pbc urso seems to b a helpfull slower for progression of disease.likewise if it turned out to be viral then there are treatments so a diagmosis would b really useful for prevention of progression etc.x cazer

  • Did you experience any pain? I have high LFT Ast and high M2 after having gall bladder removal (they were high before but kept going up) at the time they thought I had a blockage in the bile duct causing the problems on the liver, all they kept saying is "she hasn't gone yellow!" They kept giving me antibiotics for infection, It turned out there wasn't blockage or it had cleared itself but that maybe worth a check too ;-) they did check my Ama which are high and the consultant has written to my dr to say I have PBC so I'm waiting to see him next month

  • My gallbladder was removed 18 years ago, at first the dr thought it was viral or toxic hepatitis but now he thinks it's PBC because of the AMA (m2).

  • Hello Littletonya.

    I was diagnosed with PBC December 2010 after starting to itch early 2010. My LFTs (liver function blood check) was found to be higher than normal. I continued to itch during 2010 and it was basically 24 hours a day. I saw an hospital consultant here in the UK later 2010 and he did antibodies blood checks and then about 7 weeks later he asked my GP to inform me I had PBC and to prescribe urso.

    My LFTs did drop a bit naturally in the 2 months prior to seeing the hospital consultant (I got a print out of all the bloods) but the itching continued as did fatigue I had at the time.

    You didn't say but were you given anything like ursodeoxycholic acid (urso for short) that has caused your bloods to drop and certain symptons to appear to have gone? My itching has altered over time since taking it in the last 5+ years now, fatigue vanished sometime during 2011 and my LFTs did start to come down. Not sure if itching would have vanished had I not have started taking urso though.

    It does sound like you have PBC due to having certain antibodies (my consultant just called them AMAs, the anti-mitochondrial antibodies. These tend to be in a certain high titre (measure) for PBC diagnosis along with symptons and higher than normal (elevated) blood work. I didn't have a biopsy as the consultant was not in any doubt as to a diagnosis in my case and in the UK we don't tend to be asked to have one nowadays if a diagnosis can be given without the need.

    Going yellow with PBC and any other liver disorder for that matter appears not to be something that happens unless we reach a more critical stage of the condition. Due to itching my skin has gone a bit darker in places, called 'bronzing' apparently and in the sun it tans more easily (but I've never been of fair skin anyway, always tanned quite easily) and then it lasts and doesn't really overly-fade during the winter months we have in the UK.

    Pale stools can be present in PBC as can dark urine but also urso can actually cause stools to become pale. It'd due to bile not being as present in stools.

  • Thank you for the reply. I haven't taking anything, because they haven't clearly ID what's wrong. That's one of the things that confuses me, why am I getting better? Well almost getting better, this fatigue is awful!

  • Hi,

    It could be PBC, especially if the antibodies you refer to as being 'high' are AMAs (antimitochondrial anitbodies) as these can be one of the diagnostic criteria for PBC [there are different 'sub-types' of AMA, and the M2 AMA is the one mainly associated with PBC: however, some people just have M2 AMAs, and never get PBC].

    However, the symptoms you describe are also be typical for other liver conditions, so you need thorough checking for other liver issues, as well as screening for other autoimmune conditions - when I was found to have AMAs, I was tested for almost everything autoimmune. Also, strictly speaking, the level of AMAs are not found to make a difference to the severity of PBC. Also AMAs 'alone' are not enough to 'formally' diagnose PBC (according to UK/Eu/ US diagnostic criteria), and it depends why your liver enzymes were high: they should continue to be monitored.

    I would talk to the trained advisors at the 'PBC Foundation', they host this site, and here is a link to their website at the top of this page. There you will find links to phone or email their advisors, who are lovely: there is also a host of info on the website - and even more if you join the 'PBC F' - it's free. Don't read the general stuff on the internet, as much of it is out-of-date and overly scary.

    You should also ask your GP to refer you to a liver specialist - a hepatologist - and preferably one who specialises in PBC: it is a relatively rare condition, and many liver specialists still don't know much about it, gastros - often - even less. In the UK it is your right to see anyone, so if you mention on here where you live, then people on the site could 'private message' you with the names of good liver specialists, near you.

    Above all don't worry. Treat yourself, take care of yourself and do things you love - though maybe not 'drinking' or eating fatty foods - but walk, dance, read, swim, see friends ... whatever makes you happy! Don't brood and fret - all illness, especially autoimmune ones, thrive on worry.

    Take care.

  • Thank you for responding. I live in the US and I am seeing a GI specialist, don't have a liver specialist around my area. I am going to stop worrying so much and just carry on like you said. Enjoy my life ☺️

  • Hi, glad it helped and 'yes' you coddle yourself and have fun!

    There are quite a few people on here who are in the US, so if you keep checking in you may still find someone near you - helpful if you find that most people around you don't understand liver conditions, or assume it's all just to do with alcohol, as often happens.

    I would still have a look at the 'PBC F' website. Also, check out the 'British Liver Trust' site (also here on 'Health Unlocked' ) as both have far more reliable and recent info on PBC, and the 'BLT' are good on all liver issues.

    Take care,

    Gritty

  • I am having tests been going on ages I have liver disease not cirrossis though my alt went up to 873 last week and ast 567 I had a biopsy last weeks and hopefully get results next week, hopefully find out whats going on. Hope you get on ok Angela.

  • I hope you get some answers, not knowing is hard to deal with.

  • I know its been going on three years now I'm getting worse i feel really ill they say its very rare my condition so finding it hard to sort out and makes me very depressed. Thanks for replying. Angela

  • Hey don't get depressed, our life here on earth is going to be full of ups and downs. So there is no room for depression. I am going to give it to God and what ever happens I know He will carry me through. I hope you have God in your life too.

    I was hoping to get some info on PBC on this sight so I can be prepared if the dr tells me that's what I have. And reading everyone's post is very helpful. Now if it's what I have I am not going to be overwhelmed. Thanks to all the good conversations on this sight.

  • Thanks for what you have said to me I will try to be more positive. All the best.

  • I had symptoms like you and was diagnosed with AIH my Alt and Ast was in the thousand range. I was diagnosed at the early onset and with treatment I am now doing well. I do not have PBC. Good wishes to you.

  • What is AIH?

  • Thanks I've been checked for ahi and its not that. I was on hrt for twelve years and got blood clots in the little vessels of my liver which they can't do anything with. Glad you are doing ok. Angela

  • Autoimmune Hepatitis. Before you start thinking ABC. It has nothing to do with the virus of Hepatitis A, B or C. I attack all the cells in my body both good and bad as if they are all bad and in the process I attack my liver but I take auto-immune suppressants so that I don't attack. I started on Predisone and then started Imuran 3 years ago and I'm excellent now.

  • So was your blood work negative for hepatitis? Mine was so I didn't think that was a possibility. But your right my symptoms do go more towards that diagnosis. I did read that a liver biopsy will confirm if it's AIH.

  • Hepatitis a,b and c have nothing to do with AIH. Hepatitis is used because AIH is an autoimmune disorder that causes liver inflammation. I was tested when I first got sick for Hepatitis a, b and c and they were negative. But I had a anti-smooth muscle blood test and it was positive and this test is only positive with AIH. At first I really had no symptoms except for being tired and a little pain on my right side but I was also slightly jaundice. When I went to the hospital, I was admitted because my Ast and alt were through the roof and I was in liver failure per the definition of liver failure.

  • Did you have weight gain on the predisone?

  • When I first got sick I had lossy 12 pounds so the weight I gained from the Predisone was the weight I had lost. But yes I did gain weight and I also had some of the side effects of Predisone too besides weight gain.

  • Ok, so it wasn't an excessive amount of weight gain like some types of steroids do. I am so glad you are better. Your response as given me hope, it has been much appreciated.

  • Everyone is different but I ate 3 healthy meals a day and it kept the weight under control. Thank you for your good wishes. I hope you get well also. Feel free to send me a message if you have any questions I can help you with.

  • Thank you

You may also like...