Liver Biopsy?

[kosy2]

How many have had liver biopsy and what kind and what stage? I had a laporscopic biopsy with 3 samples taken. Two showed stage 2, one showed stage 3.

[SLWB]

That is why they take so many samples, because they could biopsy an area that isn't effected as much. My last biopsy said that I was at the end of stage 2, but my doctor says that my blood tests say different, so they did an MRI as well. Also, your doctor has to request that they stage it, or they won't. They never staged my first biopsy (here anyway).

[kosy2 in reply to SLWB]

How can your doctor tell by blood test what stage? I thought only a biopsy could tell what stage.

[SLWB in reply to kosy2]

Only a biopsy can tell a stage, but the levels of your blood tests are how they measure the progression. Mine has been progressing quickly, so my blood tests are done regularly and used only as a guideline. However the biopsy's are not always accurate either, but usually close enough.

[kosy2 in reply to SLWB]

Could explain in more detail about blood test and progression?

[Jtxx]

Had biopsy performed last year and told in early stages of PBC. I also have AIH but no mention of the AIH in the liver biopsy although my blood results diagnosed me. The consultant was talking about doing another biopsy but as it means going in at the same site he reckoned that there was no point. The liver is such a big organ that it can be in different locations. X

[Val02]

My scan and bloods were bad when I was being tested for PBC and my consultant said he thought I has early cirrhosis from the information he had. The biopsy showed interface hepatitis so he was positively beaming when I went back for the results as from the biopsy I was still Stage 1. I had another scan this year and my liver looked normal so URSO has done its job and confirms the damage was still reversible.

[spoul]

hi there i live in the uk and my consultant doesn't believe biopsy to be a useful tool for the reasons already stated above. However i did notice that someone posted about a fibroscan the other day and the suggestion is that this may be more reliable. Personally i am not concerned or my consult ant about staging, as each indidvidual has a different progression and not much has changed in my bloods over 14 yrs with medication. Obviously i know i am not as well as i was when first diagnosed but just take each day as it comes and enjoy like

keep well all x

[Hidden]

I have had a biopsy but wasn't told anything about staging at all.

[TerrieLee]

I had a liver biopsy 2 years ago and was staged at 2 3/4. Just had an ultrasound a week ago and it showed fatty liver which the original ultrasound had not shown. I'm so tired of the whole thing I could scream. Just went through about a month of extreme tiredness and always feeling like I was coming down with something and now all of a sudden I'm feeling better and I have done nothing different. Oh yes, ultrasound did show I have a problem with my kidneys now and they want me to go for cat scan. Ultrasound says "possible dromedary hump versus large cyst versus solid mass" . Just have to trust that it is nothing.

[kosy2 in reply to TerrieLee]

Terrie Lee I'm screaming along with you. It makes it very difficult with family and friends. Most of the time I feel as though they think I am not being truthfull with them about how I feel. And just when they get used to me feeling one way it changes. Lately I have been hiding as much of my aches and pains and tiredness as I can. What is really messing with my head is the fact that PBC is progressing and really good days a few and far between. And then on top of it all you go the doctors in hope of some answeres and find out that you know more than they do.

[TerrieLee in reply to kosy2]

So good to hook up with people who understand. I hate the question from family and friends "how are you" cause I don't have a clue, so like you i just say okay. Very hard right now, we live in fla and my mom comes down in winter to stay and she gets very concerned and demands to know why doctor isn't doing more, she's 88 and remembers the good old days when doctors came to your house. I work in health care and have known my doctor for a long time and I still feel like he's clueless about this. Thanks for understanding. I'm choosing to ignore it right now.

[kosy2 in reply to TerrieLee]

As far as the doctors, I do get a little comfort in the fact that their really no treatment to cure PBC. I think I would lose my mind if I thought there was and could not find a doctor that knew about it and I suffered for nothing. It is helpful to have someone understand how you feel. My mom refuses to believe their is anything wrong with me. Can't even bring the subject up. Even when I spent days in the hospital she thinks it something else. Husband just thinks I am lazy and the five kids are just confused.

[TerrieLee]

I have 3 grown kids. The 2 boys don't really get it. Our daughter has worked in health care also and she has researched and is very concerned. Husband also works in health care, but at times he tells me I have to push past what I'm feeling and toughen up. Some days toughening up just isn't possible, is it? My mom wants to talk about it too much. I don't want to be defined by this. During good times it really is possible to believe that we will die from old age before this thing gets us.

[EAJSWW]

Hiya, I have only had one biopsy and many of the top specialists, don't ever do a biopsy...

Mine showed stage 3 it also picked up AIH crossover. I have since had a fibroscan which has confirmed the damage.

As far as blood tests are concerned, please be mindful of what bloodtests mean, as they are only an indicator of how your liver is functioning at the time it is taken.

Yes of course if certain levels such as Bilirubin are raised then it could indicate that your liver is struggling to cope. And certain tests s will confirm the presence of enzymes which are a diagnostic tool, but Many of the Liver function tests are very sensitive to day to day life, they can alter if you are unwell with a cold, dehyrdated etc... a one off test isn't an indicator of progression and should be retested if you get a reading that is very different to your last test. many people get very hung up on 'numbers' when they are only part of the very big picture which is very different for each of us.

Also as PBC has no known progression, it doesn't seem to matter what stage a person is at. One person can be at stage one and never progress, or you can also be told you are at acertain stage then get no further, or you can go from diagnosis to liver failure very quickly. I think we all just have to take each day as it comes and make the best of what we have when we have it regardless of where our 'stage' is...

[kosy2 in reply to EAJSWW]

Great information, THANKS. You have eased my mind a bit. Doc never explained why my ALT and AST would go from High 600's and then 3 weeks later be "in the normal range". Like you stated the numberes only indicated liver functioning at the time of the test.

How long have you been diagnosed with PBC? Was biopsy done soon after?

[EAJSWW]

I was diagnosed 10 years now. i was pregnant and had a ruptured uterus at delivery (not PBC related) so it was about a year after I had the biopsy. When I was diagnosed my Alk Phos was over 1000 and initially they thought it the pregnancy, but apparently it wasn't. it took about 2 years for it to get into the 400's and now sits around 350 and always has....

When I diet and have my bloods done (I have them done every 12 weeks anyway) then it always goes higher. if I have a cold or am generally not well it goes higher... My consultant never panics me.

if my tests are high he just asks me what I have been doing lately and there is generally an answer as to why its high. My last admission to the hospital my LFTs were all bad compared to usual... they insisted my specialist assess me but the next day my levels were back to roughly where they had been ... therefre I really try not to get hung up on the numbers.

Had a fibroscan recently. it was so easy.... I am over weight and know many people who have struggled with getting an accurate fibroscan reading when over weight but mine worked a treat and he was happy that it showed a correlation between blood tests and my biopsy... he said it showed there was significant changes to my liver but that i was not in liver failure and had no reason to expect it as I have been stable for many years.

Enjoy the good weather

[kosy2]

I'm live in Baltimore, Maryland USA. In Sept. 2010 I had a Lap Band placed in hopes that I could loose 120 pounds. Lost 60 pounds in 3 months - then one night rushed to hospital. Three days in hospital - sepsis with e coli - never found cause. 3 weeks later - Christmas day back to hospital. This time ton of test, MRI, Ct scan, blood test. Doc could not tell me what made me so sick. Was not Lap Band, gallbladder. 2 weeks later by the way you are AMA+. Then Sept. 2011 rushed to hospital again could not find anything execpt high LFT. Dec. 2011 Lap Band had to be removed (food kept getting stuck) so had liver biopsy done as the same time. As of today have regain 40 pounds. Part that drives me crazy is that one minute I feel ok and the next I am in the hospital. After 3 or 4 days the only thing I get are large hospital and doctor bills. Never any answeres. I am so thankful for all the wonderful people on this site. I don't feel so alone anymore. Family is sick of PBC talk.

[EAJSWW]

Just wondering about your sudden deterioration following lap band.

Maybe it wasnt the lap band that caused the problem bu the sudden weightloss itself.

20lb wieightloss in a month (60 over three months) is a huge amount of weight loss (well done) But the fat that is lost would have had to have been excreted by the liver in the bile and out of the body through natural processes.

So losing that amount of fat in a short time would have made your liver work very hard.

The reason I am saying this, is I went on a very strict diet a few years ago and lost 4 stone (50+ lb) over 4 months. My Alkphos was very high at this time and my consultant said it was because the damage in my bile ducts were causing a back log in getting rid of the excessive bile I was producing due to the rapid weightloss. My blood levels did normalise after a few months. I am wondering if this might have been the reason you seemed to deterorate so quickly?

[kosy2 in reply to EAJSWW]

EAJSWW,

Just saw this post. Don't know how I missed it would have responed right away.

Never thought that the lap band was the cause for my sudden deterioration. Neither did the doctors.

Interesting point about the rapid weight loss. Never thought about the connection before.

You have given something to ponder and research.

BIG Thanks