Primary biliary cirrhosis

[Sal3-30]

My name is Janet. I'm 63. I had blood work done and myiver enzyme levels were 119, 120 and 125. I have to have a liver biopsy. I am absolutely petrified and am working myself into a frenzy. Did this happen to anyone and what weere your results? TY

[Zelda5]

Hi Janet,

Did you test positive for AMA's? I'm assuming you did if your Dr. suspects PBC. Ive had a biopsy and it wasn't so bad and the worst part of it for me was having to lay for an hour on my side afterwards. Actually, my biopsy was negative for PBC, and it showed a fatty liver instead. Also, I've read that PBC is often found in the early stages and when treated with Urso it slows the progression of PBC and your more likely to die with it than from it. Wishing you the best of luck with your biopsy and please try not to stress too much!

[teddybear7]

Hi honey it is a standard procedure in some places to confirm the PBC diagnosis. I refused my biopsy as I had other things in my bloods that gave the game away. As for your question about results. No one can answer that it depends on you & your biopsy. But they should put you on urso and you should be able to carry merrily on with normal living providing your at an early stage. Become a member of the foundation. That's where I've learnt everything from. They have a great leaflet & a compendium if you want to dig deeper. I panicked at first but with their help i just bumble along as normal now. Xx

[Hidden]

I can't comment on the biopsy I refused to have one based on the consulatant making the diagnosis from other factors. If it was needed for diagnosis then I would have gladly had it done. I was diagnosed 6 years ago and believe me I went into over drive on my thinking and reading up about PBC, call the pbc foundation for help they will have the upto date information and will be a great support.

[dollydaydreams]

Hi, I had to have a biopsy and felt the same as you but if I had to have another one i would have it not problem at all. The only thing i felt was the anesthetic going in and that lasted seconds like at the dentist, i was chatting to the nurse and heard a click and he had done the biopsy, Like jean the worst bit was lying still but i had to keep still for 2 hours and i was starving hungry and they would not give me anything to eat ( i had supplies of quavers in my case though and hubby on hand to pass me a packet :o)). Don't stress about it my results came back as positive for severe PBC, that was 5 years ago, put on ursofaulk straight away and hasn't progressed any further and i feel better now than i did before biopsy, so big hugs and thoughts sent out to you.

[GrittyReads]

I would talk to the advisors at the PBC Foundation. They 'host' this PBC website on the larger 'Health Unlocked' website - link to the PBC F site at the top of this page, & on the site you will find phone numbers and email address so you can get in touch with their advisors. You might want to check out 'The British Liver Trust' site, also on 'H U', too. Good factfile etc if you join the PBC F, and lots of info on the site, but it would be even better to talk to their people, and have all you results and letters to hand, too. Get copies from your GP/consultant if you have not already - this is your 'right' in the UK - though there may be a small charge for copying.

You only mention that your liver enzymes are high. For a diagnosis of PBC, formally, you need to have raised liver enzymes consistent with PBC, and to also test +ve for AMAs (antimitochondrial antibodies) - as Jean43 has already said, you don't mention the AMAs. The third diagnostic test for PBC is a biopsy, which would often be done if you have one of these test results, but especially if your liver enzyme abnormality was consistent with PBC, yet you didn't have AMAs, or if you have AMAs and strong symptoms of PBC. Some people just have AMAs, but their bloods are otherwise okay, and they don't have PBC, but they may develop it, so they have liver tests regularly. Some people have PBC and abnormal liver enzymes without having AMAs, and would be advised to have a biopsy to check. It also depends on symptoms: you don't mention if you have PBC symptoms. You cannot be diagnosed on symptoms, but they can guide the medics to check for various conditions. Depending on what liver enzymes are out of kilter, I would also expect them to check for other liver conditions, as well as other autoimmune conditions.

There are lots of reasons why liver enzymes can be out of sorts, some of them not so worrying, so it may depend on what else has been tested for, or any symptoms you may have. You don't need urso until it is definitely confirmed that you actually have PBC.

I hope it turns out okay, and do try not to worry. PBC is no longer anywhere near as bad as it used to be, due to early detection, now, and also urso, which slows things down, as Jean43 says.

Take care

[Sal3-30]

Thank you all for your comments. I really don't know what AMA's are, as I've just been told about all of this 2 days ago. The doctor just said my liver enzymes were slightly elevated. I seem to have other symptoms. I'm very tired, I've had diarrhea for a few weeks and just very depressed. I have no pain and am not nauseous. I pray I'm ok. I'm working myself up into a thither.

[Sal3-30]

I forgot to add that I have been itchy for 4 years. I understand that's a symptom that many have had. I'm still in a haze over all of this.

[liver-bird in reply to Sal3-30]

Hello Janet - Try not to worry yourself too much because stressing can make you feel worse. My lfts were much higher than yours but have reduced significantly since I was diagnosed about 18 months ago aged 66 and started on Urso. It takes a while to come to learn about pbc and to come to terms with it but there are many far worse diagnoses and I was told that most people die with it rather than of it and no doubt you will hear this over again because it is true and it is also good news. Life is still worth living with pbc and they may find you do not have it at all.

I did not have a biopsy because it was clear that I had pbc from my lfts and amas. However, I have read from many others that it is not a very painful test so nothing to be frightened of. Take heart, and do let us know how you get on. Diane.

[Erinlynn]

Hi - I'm 56 and was diagnosed about 2 years ago now. I had elevated enzymes in my bloodwork and had a liver biopsy to confirm. It was a shock for me as well, but the procedure was easy enough and the treatment (ursodiol daily) has worked. My latest blood tests show that I am in the normal range on my liver enzymes and other than some mild itchiness and fatigue, I operate as if nothing is wrong. It's a very treatable condition and I hope your experience is like mine - just something I have to deal with. Take care!

[sap7649]

We all have gone thru this you will still continue with your life. Those are not that severe . Be strong

[dianekjs]

Hi, I'm sorry you're going through this. As a couple of others have said, a positive AMA is the main indication to look for PBC. AMA stands for anti-mitochondrial antibodies, which are highly specific for PBC. If you did not test positive for AMA's it is unlikely you have PBC. I would not consent to a biopsy if this simple blood test hasn't been done first. I suspect your doctor ran the test and didn't share the information with you, but that's just a guess. The biopsy itself isn't that bad, but it IS an invasive procedure and there should be a clear indication for performing it. As for PBC, if it turns out that this is what you're dealing with, please try not to panic. In most cases it is a very manageable disease with early treatment. If you're not already living and eating "clean" I would get on that immediately. No alcohol, cut out all or most sugar, no processed, packaged foods, gluten may be problematic, etc. Good luck, and keep us posted.

[Kevin733]

I concur with the others who have posted here that you should be tested for AMA before proceeding with a biopsy. I know you're upset, but there are many of us here to help and support you. And it's important to get information, such as your AMA result, before jumping to conclusions.

[Sal3-30 in reply to Kevin733]

Kevin733. Thank you . I will call tomorrow. I'm a wreck but have calmed down a bit. Everyone on here is great. So glad I found this site😃

[Sal3-30]

Does anyone know normal AMA levels? I can't find it anywhere. TIA

[Kevin733]

Sal3-30, it depends on the type of test being used. Technically, you shouldn't have any AMA in your blood. However, in the US, on a standard ELISA, < 20 is considered negative, between 20 and 24.9 is equivocal, and 25 or greater is considered positive. Also, within AMA positivity, the M2 subtype is more strongly associated with PBC than other sub-types. Finally, AMA is more predictive of PBC in females than males.

I hope this helps.

Kevin

[Sal3-30 in reply to Kevin733]

Thanks Kevin. I just found out my AMA was 20.1.

[Kevin733]

Thanks. As mentioned above, this equivocal (borderline). When you say your enzyme levels are 119, 120 and 125, which one is which? I'm assuming these are ALT, AST, and ALP, but what order are they in?

[Sal3-30 in reply to Kevin733]

He just said my levels were once 119, then 120 and then up to 125. I think it was the same test done at different times. He just said my enzyme levels. I was so nervous, I fidn ask many questions.

[Kevin733]

Do you have a printout of the report? If not, please request it. It's hard to advise on what to do next without knowing which levels correspond to which enzyme.

[Sal3-30]

Hi Kevin733. By the way, my name is Janet. I finally had my liver biopsy today. It wasn't bad. Right now, I just feel like I've been kicked in the side. Now the waiting game begins to get the results. Thanks to everyone who have been helping calm me down😃

[Sal3-30]

I just want to let everyone know that my liver biopsy came back NEGATIVE!!! Nothing wrong with liver at all. Thank you all, who took the time to respond, for making me feel not alone. I appreciate you taking time out of your day to put me at ease. I wish a long and healthy future for all of you!!! Thank you❤️

[SEscobar1 in reply to Sal3-30]

Thats wonderful!! I hope my liver biopsy comes out the same! So what was causing your enzyme levels to go up then?

[Kevin733 in reply to Sal3-30]

Janet, still doing well?

[Kevin733]

Congratulations! All of our best to you as well