I have been under investigation for approx 6 months due to a routine blood test showing inflammation of the liver. I was advised to take myself to hospital as it was so high. The hospital suspected an infection picked up on holiday but with no real improvement over the months they now suspect AIH and in dec ordered a liver biopsy to confirm diagnosis. (Ultrasound conducted early on was fine.) Also prescribed prednisolone which has reduced the inflammation,now on just 5mg per day.
The ultrasound guided biopsy was two wks ago and still no results. In the last week I have been experiencing a dull ache on my right side and am now convinced that there is something else wrong: pancreas issues, cancer, etc.
Apart from that I have been fine: no nausea, no weight loss, appetite normal. Hopefully results will be in soon but I am starting to panic. Has anyone had a similar experience? Would they know by now if it was cancer eg surely they can detect this on blood tests? Just worried as to why I am aching suddenly despite only two days of initial discomfort after the biopsy.
Feeling miserable after 6 months of waiting and fingers crossed for some positive news and some firm answers.
Thanks in advance. X
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Annie22
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Hi Annie22, its very scary when in this position but my experience was more or less the same.What is happening is they are doing all these tests to rule out other illnesses.I was tested for lots of things and had ultrasound, CT scan, biopsies and loads of blood tests. This is necessary to ensure they are treating tge right thing. the strange thing us I got no pain in my liver when I was at my worst but only when it started to heal with taking the steroids.Im not sure why! What I would say is if you are worried about the pain dont be afraid to go and see your gp. I have found that I have learned about taking care of myself by asking questions and keeping track of my results and symptoms. As time goes on you will feel better and less anxious. good luck with your results....maybe give the department a call and chase them.Im sure they will be ok!
I agree with Chris2591, I would certainly chase up the results and be positive. There is no point in worrying when the biopsy results should be available. I had a transplant and had no pain beforehand.
Hi, I started very similar to you and after my biopsy I had quite a lot of pain for quite a while after so it may be nothing to worry about. Just make sure you inform your GP or specialist of your symptoms. Also AIH is usually very easy to control with a good outcome. Good luck.
I agree with adolescent and chase the results. Whoever ordered the biopsy will have a secretary, and they should be able to tell you if the report has been written up. It can take a while, even though 2 weeks sounds a long time, urgent reports and emergencies take priority I'm afraid. But a quick call may put your mind at rest as to how much longer you have to wait. You will most likely need to either go to your GP to discuss the results, or wait for a clinic appointment back with the liver specialist, if it was they who ordered a biopsy. Re cancer, if you had an AFP (alfafetoprotein) test done, then this is a tumour marker for liver cancer. Normal levels are below 10, so check with your GP if this test was done. TBH I doubt you have liver cancer as its very unusual with AIH.
Thank you everyone for your replies, I really appreciate it.
Yes, I have chased the secretary several times already and in the past and they have always been very helpful and sympathetic. I heard from the hospital again this morning and still no results in - the labs have told them that these tests can sometimes take up to 4 weeks for the results come back! I was initially advised about a 5 day turnaround - I think this, combined with the pain which I wasn't expecting, is the source of my anxiety.
At the start I had blood tests on an almost weekly basis and lots (hep C, etc) has been ruled out so I guess they would have done the AFP at some point (although I can't be sure so will ask). As a few of you suggest, perhaps keeping my own records and taking control a bit more will make me feel better.
I suppose I need to put faith in the consultant and now try to be patient over the next two weeks until I hear from them.
Ps. this site is a great resource - just having access to certain information and other people's experiences is of huge benefit. Very pleased I came across it.
Hi. I was made to fly home from holidays for my biopsy several years ago, couldnt possibly wait too urgent. Then it took five weeks to get results despite constant phoning and becoming very unwell including jaundice. Mind i did find out apparently the person doing the biopsy tests was on holidays and it was left waiting for their return. Dont worry about nagging sometimes you need to and as others have said see your gp aboit pain.
I read something which said, if your LFTS respond to steroids/prednisolone, which yours clearly have if inflammation has gone down enough to reduce to a maintenance dose of 5mgs, then you are more than likely to have an autoimmune cause. Steroid treatmnet wouldn't do much at all if you had a tumour in your liver. As Bolly said too, it's very rare to get a liver cancer with AIH, albeit commo0ner than for general population. It is commoner with viral heps.
Lastly, if you've had scans they'd have shown up 'suspicious' areas and they'd have done more detailed scans such as MRI, probably before the biopsy. I hope this is reassuring for you. It is frustrating to have to wait but you are probably in a queue, and because you've had a good response to steroids you probably aren't at the top any more!! I know it's perverse but it's actually a good thing :-). I think with AIH and similar, it's not unusual to have odd pains around the liver. I know some docs will tell you this isn't possible/likely, but - <yawn> they don't know everything.
Thank you for your replies. Interesting note re LFTs and response to steroids witchiegirl, I'll look into this. Ultrasound scan was conducted back in Sept and everything was normal - I wonder how quickly things can change and develop over a 6month period - I'm sure my consultant can advise. Everything crossed for good news.
Hi again Annie. I'm still waiting for an MRI (not biopsy) report for a scan that was done 24th Jan, so that's nearly 6 weeks! Do you have a clinic follow up appointment made, cos even if you can lay your hands on the biopsy report you still need a liver specialist to translate the medspeak for you and to discuss what to do next based on the findings. Your GP will not be experienced enough to translate a biopsy report for you, it should be done by a hepatologist.
If your ultrasound in September was normal that is further reassurance you are unlikely to have cancer. Primary liver cancer usually occurs after the liver has been damaged by cirrhosis for some time, and from what you say you don't have any serious liver damage and certainly not cirrhosis. If your liver is inflamed (as your first post said) then it is probably pressing on nerves/other organs and that may be what is causing the pain. I had primary liver cancer diagnosed 3 years ago and I had no pain at all, but my AFP levels were elevated above normal. My cancer was from chronic Hep B, and though I have AIH overlap I have been reassured by my specialist (and real life stories on the autoimmune UK forum - supportaih.websitetoolbox.c... that cancer from AIH is rare.
Hope this reassures you a little while you wait, waiting is the worst, you have to find a way to manage the waiting.
Hi Bolly, I'm sorry to hear that you are still waiting but this does make me feel better...!
I suppose I am lucky in the respect that I have always been seen by the hospital rather than my GP so yes, a clinic appointment with my consultant (gastroenterologist/hepatologist) is likely to be the way I hear of my results.
Still no appointment through although following emails from the medical secretaries the consultant did send me a personal email on Friday evening to apologise for the delay and saying that he would be chasing the path lab for results. He also replied to my question about my most recent blood test which shows my ALT is down to 127 so the medication is working well - (ALT 350 in Sept, rocketed to 3500 in October when I was admitted to hospital and then down to 1500 without treatment; on 30mg pred from mid December and then tapering course from February so this seems to be a very good response and a positive sign? Not sure if this is a quick response time or not... I think all other markers were back to normal in November and they seem very positive that the liver is definitely the issue - still not sure about if AFP was done though - will have to ask.) -
However this recent ALT result does suggest that my liver inflammation is less severe and so I would be surprised if the pain was being caused by inflammation/pressing on other organs if it is reducing. The constant niggle I was having is almost gone actually although I get it from time to time when sitting, just a dull ache but def not present before biopsy. I will def mention this at my appointment.
Will take a look at the resource, thank you. Sounds like you have been through a lot - a long road and your own periods of waiting around for news. Like you say it is the wondering and waiting that gets you - all this second guessing!! Luckily they keep me very busy at work so I have a distraction from the worry Thank you again for your reply.
Hi Anne
I was diagnosed with AIH around 6 months ago, im now on only 1mg of Prednislone and 100mg of Aza, my LFT's are completely back to normal however the pain in my right side can sometimes be excruciating. My doctor advised me that this is the muscles around the liver still recovering. The liver has no nerve endings so does not feel anything however the muscles and tissue around it does. Because your liver has been inflamed it almost pulls the muscles around it, according to my doctor that is where the pain is coming from, and yours sounds very similar. I hope that is all it is.
Thanks for this, really helpful. I suppose that would explain the twinges I feel now and again. (Although six months seems a long recovery time!) I hope this is what I am experiencing.
Interested in your diagnosis; I hope you are coping well with it. Did you have a biopsy to diagnose the AIH to? How are you getting on with the lower dose of Pred - have your side effects subsided? I have had the usual side effects, nothing too bad though. My consultant advised that if he diagnoses AIH then I would need to remain on a low doese of Pred and a dose of Aza too; apart from that I don't know much about the condition just yet but will do some research.
Wow 3500, I'm not surprised you have some discomfort! Glad the levels are going down, but even 127 is still high. Depending on which lab does my tests, normal is below 50 or 35. Greater than 1,000 is considered VERY high, so yours were very very high! You still have liver inflammation according to your 127 level. Mine is down to the 20's due to regular doses of Azathioprine. It took about 6 months to wean of the prednisolone, and my highest ALT was 600 so way lower than your level. You're going in the right direction but not quite there yet. You should be able to come off pred completely if your liver enzymes stay down.
Thanks Bolly. Yes I am aiming for 45 ish as normal so a little way off. In retrospect it does seems odd that they waited three-four months before prescribing any medication to stop the inflammation - they suspected it was a virus picked up on holiday and were hoping that it would itself out. I hope no irreversible damage has been during this time. The biopsy will tell us - if I ever get the results back!
Thanks again for all the replies, I'm finding this forum a great support.
Hi Again sorry i didnt notice your reply. Yes it was a biopsy i had to determine the condition, i found out only a few days after wards.
Id say i have only just really recovered, i spent about 4 months off work and in bed after i was diagnosed as i didnt have the energy to do anything. It was tough but things do get better, im now working around 25 hours a week which is far more tiring than it used to be but things only seem to be improving. I'll hopefully be off the steroids soon and will remain on the Aza until further notice(100mg). As for the pain my doctor advised me that being physical helps and it really does so i would definitely consider even doing just small walks until you have more energy.
Good luck with everything, if you have any more questions please dont hesitate to ask!
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