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Tell me about your liver biopsy

(14 Posts)
PsuedoSatisfactionBaby Wed 29-May-19 20:31:34

Hello...am being scheduled for a liver biopsy for suspected liver autoimmune disease. Told it will be under local anaesthetic and have to lie down for 6 hours after but unlikely to have to stay overnight. Has anyone had one? Would you mind sharing your experience? I am keen to do it as I really want to know what is wrong with my liver. That being said, now it is being scheduled, I’m bottling it a bit!

ladybyron Thu 30-May-19 11:46:49

I had the procedure a fortnight ago, also for a suspected autoimmune disease. I had 3 samples taken under a local and with the use of ultrasound. I then had to lie on my back for 2 hours before being released 4 hours later.
Tbh, I hated the whole thing - it feels like a stab just below the ribcage. I think I was just expecting just the one and found 3 quite traumatic. It was all quite quick in fairness. Then again I do have a low pain threshold and hate going to the dentist etc...
No side effects or anything after being released.
Good luck- sounds like we are on the same journey!

JazzersMaw Thu 30-May-19 20:48:33

I’ve got AILD and I’ve had two biopsies several years apart. Both times - different health areas - I was kept in overnight. Last time I slept through a lot of the 6 hours of lying flat. It seems to vary depending on your hospital policy whether you’re in overnight or not. I had quite bad shoulder tip pain after it - they gave me paracetamol and it eased. First time I was given sedation; second time was just the local at the puncture site. When the needle goes in there’s a transitory pain and it can feel like you’ve been punched. The needle they use also gives one loud clunk - they’ll possibly let you hear it beforehand so you’re not alarmed by the sound! It’s usually fine. The liver can bleed a lot which is why they check you regularly afterwards (pulse, blood pressure, etc) and keep you lying flat. I hope it goes well for you, @Psuedo.

PsuedoSatisfactionBaby Thu 30-May-19 20:51:42

Thanks Lady. Not something I’m looking forward to but glad to hear there were no after effects. How long till you get your results? I don’t even have a date yet..suspect it could be months.
Good luck with your results...hope for a positive outcome.

PsuedoSatisfactionBaby Thu 30-May-19 20:54:10

Thanks Jazzers. It sound like I’ll be having a procedure similar to your second from the description the registrar gave me. Urgh! Woah it could be diagnosed with a blood test

gobbin Thu 30-May-19 21:23:27

Had one years ago. Local numbing at biopsy site and the biopsy needle going in feels like a quick punch but didn’t hurt at all. I was kept in overnight and had paracetamol for the shoulder pain.

ladybyron Fri 31-May-19 16:42:48

Pseudo- got my results today and have a condition called 'auto-immune hepatitis'. Apparently have had it indefinitely- I am a coeliac too. Been put on steroids.and an immunosuppressant.
If anyone else reading this has the same diagnosis- if they could be kind enough to relate their experiences then I would be v grateful.
Pseudo, best wishes and hope that you are not waiting too long for a date. I think the waiting and the uncertainty is the worst part. Let's keep in touch.

PsuedoSatisfactionBaby Sat 01-Jun-19 06:20:22

LadyByron I have read about AIH as the doctor suggested it could be one of the, what felt like loads of conditions that I might have. I hope the medication helps you and at least it is good to finally get a diagnosis. I don’t have any physical symptoms at all (other than totally exhausted all the time but they could well be down to the fact I have Graves disease...or just getting older!). Did you have symptoms? I’ve just had crazy bloods for the last 15 years that are getting gradually worse but it isn’t really affecting me as far as I know.
Take care and yes let’s compare notes..I rather fear it will be months before I even get the biopsy. Hopefully someone will come along who can share their AIH story.

PsuedoSatisfactionBaby Sat 01-Jun-19 06:22:36

And thanks too gobbin hopefully positive results for you. Interesting to know about shoulder tip pain...will look out for that.

ladybyron Sat 01-Jun-19 13:08:21

Pseudo, I have had no symptoms at all apart from the liver function results in a random blood test which sent my GP into a tailspin. I find it bizarre that the specialist said I have probably had it all my life!
I have had a strange eye infection recently that the Drs were puzzled about its possible origins and I have lost a lot of weight without even trying. So the liver man thinks they are all related to the new diagnosis. My days do seem to be taken up with Dr's appointments atm!
Quite scared about the steroids- people are lining up to tell me their horror stories, but obviously I have no choice.
Btw I didn't get the shoulder pain after my biopsy. Hope that you get seen soon Wishing you well.

JazzersMaw Sun 02-Jun-19 19:13:44

@ladybyron, sorry it’s taken me an age to get back with my experience of having AILD. I don’t have AIH precisely but there are features of AIH in my diagnosis- it makes me extra special hmm as I’ve got an overlap condition that nobody much has heard of and it affects my bile ducts as well as my liver. The second biopsy - about 5 years ago - showed inflammation and a lot of scarring (fibrosis) in my liver and bile ducts. I was started on prednisolone (steroids) at a fairly high dose. It was tapered fairly quickly to a moderate dose and then a low dose. I was on the low dose, 2 to 5 mg per day, for around a year and then it was tapered to nothing. During that time I had a bit of a hooha as I reacted badly to the first two immunosuppressants I tried. Now I’m on a steady dose of a third one and it’s working to keep things under control. I’m at quite high risk of a relapse so there’s no plan to stop my medication unless it stops working. With straight AIH there’s less risk once the inflammation is under control but I think patients and doctors can vary in this.

There are some places for support. HealthUnlocked has a British Liver Trust board - it’s for anyone with liver disease of any cause and there are regularly users with AIH. Then there’s www.aihsupport.org.uk - they used to have a yahoo group (I think) but now they’ve moved to Facebook which I don’t use so I’ve no idea what it’s like. It’s a closed group and it seems you can apply to get in via the www address.

Something else I’ve found useful was a MOOQ on liver disease and how the liver works. It’s a free online course via Future Learn - the liver one seems to run a couple of times a year. I did it last year and it was very useful. It’s run by Uni of Birmingham. I know it would help if I could tell you the name - i’ll try to find it. You can do a search on the FL site under Health.

JazzersMaw Sun 02-Jun-19 19:24:12

The Future Learn course is called Liver Disease: Looking after your Liver. There’s no start date on the website but you can join FL and register your interest and then you get a message when the next course date is known. It’s very basic stuff but I found it useful. It’s a couple of hours per week for about 4 weeks.

ladybyron Mon 03-Jun-19 11:33:55

JazzersMaw- that is really helpful, thank you so much. The Dr originally though I had Pbc, but after the biopsy it is only AIH. Can't believe I've written 'only'! Will certainly do a search on the FL site.
Atm I'm on prednisolone and and the immunosuppressant Azathiopine. Combination is making me feel nauseas, but obviously it's v early days.
Did you find that you were a lot more susceptible to colds and infections in the early stages? I am slightly dreading that.
Used to think I was a bit of a rarity having coeliac disease- now this
10 000 to 1 disorder! Never know what life is going to fling at you!
Thank you again.

JazzersMaw Sat 08-Jun-19 19:05:00

Touch wood, I’m not having a bad spell re-infections on immunosuppressants at present. I did have a bad spell with various skin infections and a bout of shingles in my eye in the first couple of years. Azathioprine was one of the meds I tried to start with which disagreed with me. It’s good to hear success stories! I’m worrying about my eldest son who was recently diagnosed with ulcerative colitis. He’s tried Mesalazine and had it stopped due to side effects - I suspect he’s about to start Aza. He can’t remember the name though.

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