I was diagnosed two and half years ago. I have been on Ursodiol 1500 mg a day. Just had labs completed. All labs are within normal range! I have stage 2 Fibrosis as per lover biopsy completed last year. I’m relieved and pleased! Praise be to God!😊
I’m happy for you! That’s a great report🌸
What wonderful news!! How is that even possible with stage 2 fibrosis? I've never heard of that. I hope you keep going the right direction!! Thank goodness you are responding so wonderfully to URSO!! Please keep us posted. 👍❤
I just received the results from my first fibroscan... Stage 3 cirrhosis and a 1.7 lesion but all blood work is normal. I had a biopsy in 2013 saying that I had PBC but not cirrhosis at that time...crazy
Caused by fatty liver plus pbc.
Crazy i thought normal blood work was good sign
Yes, normal blood work is good but dr says just cause it's normal that don't mean I don't have it. Then when I see other Dr's, they are like, blood is normal so can't be bad.... I'm now at stage 3 cirrhosis caused by nonalcoholic fatty liver + I have PBC.... Why ... IDK either
Ballymahon2...do you see your dr soon? You might ask.
I met my hep on 14th may dont have another appt for 12 months my primary doctor wont know
You say all your liver enzymes are in normal range? Bilirubin? Albumin? Alk-phos? ALT? AST?
Now that is scary to me. Are liver labs ANY indication at all of how our livers are doing?
How are you feeling?
Ktltel...not meaning to hijack your post, but I have read a few posts that say labs are not true indication of how liver is doing. Yes, that’s scary. If that’s true, then why bother with all the labs. I meant to ask my dr last Thursday & forgot. Let me know what you find out. 😊
I will. This is yet another huge let down in this PBC journey. Since the very beginning when I was 1st diagnosed my doctors stressed how LFT's tell the story. Even making me believe that a biopsy is a definite telltale sign of staging PBC. All of this is not true!
For the past almost 2 years, I've relied on those LFTs numbers as I thought they were an indication of how my liver was doing. I was told to keep a journal and track those numbers by my doctors and even the information sent to me by other PBC groups state the same thing. Now I'm reading that LFTs aren't really an indication of PBC progression. One can have normal LFT's and be in stage 3 cirrhosis???? What's our indicator then? How do we know that URSO is even working? What tells us that our PBC is progressing or not??
Yes. I am told by my dr they especially watch ALP & bilirubin on me since I only have PBC & no AIH. I wish maybe Robert can help us here. This is very discouraging. But maybe also, her meds have brought numbers down. But we don’t know what stage she was at diagnosis? I need to read her post again.
Yep, there are variables to consider. Thanks Gwillistexas! ❤
Yes, AS 18, ALT 35, Alk.pho 104, Bilirubin total 0.3, Protein 7.2, Albumin 3.0, Bilirubin, direct 0.1
I had a biopsy 2013 that showed PBC but not cirrhosis. I had be getting ultrasounds every 6 months and a couple of MRI's showing PBC, enlarged spleen, fatty liver and at some point cirrhosis.
I feel great! All of those labs are in normal range.
That's good news. Hard to make sense out of the normal lab results but my labs are always normal too and I have stage 3 cirrhosis
You can have chirrosis and still have normal labs
Isnt that just crazy why do doctors place so much value on blood markers if you can still have cirrhosis
Hi, I just happened upon this run of posts. It's distressing to me. My hepatologist and GI both make a huge deal about labs and having them done every 3 months. Ultrasound every 6 months. The only thing elavated in my labs is my AMA-M2 and my Alk-phos. My biopsy was unremarkable and 4 ultrasounds since October 2016 have been normal.
With all that said, I'm reading now that biopsy, ultrasound and labs aren't true indicators of the progression or stage of one's PBC. CRAZY.
Does this mean I could be way worse than Ive been led to believe??
My NP invited me to a liver support group that she holds. It is last Tuesday of each month. It’s not strictly PBC support but I’m going & im asking. Someone certainly should clarify for us.
Ktltel...we need to remember also, fatty liver can lead to Cirrhosis. I don’t have that & like you, only positive AMA M2 & alp. I bet someone here can get an answer or explanation. 😊
Thanks for your quick reply Gwillistexas.
But the LFT'S. Apparently their not an indication of progressive cirrhosis?? I thought just the opposite.
I've sent a message to PBC Robert but haven't heard back yet.
It has me concerned as well. I have read the same info from someone on liver foundation fb pg. but we need confirmation. Pls let us know what you find out. I’ll be watching for Roberts response as well. 🤗
The lab changes mean that your liver is stabilizing and the PBC is not progressing. I contribute this to Urso and Milk Thistle. My hepatologist told me that the scarring of my liver can heal over time if I am a responder to Urso. I was diagnosed in 2016. I had biopsy last year which indicated Fibrosis stage 2. My bilirubin was normal but alkaline phosphate was high. It is 120 now. My alt and ast were high too in 2016. I hope that is good news with my labs. I feel better and no longer itch.
Yer that is because I'm on a clinical trial at mo and all my labs are well within range the first time for 6 years but docs says until i have my fibroscan in July they are not sure if drug is really working so go figure that one out. Last fibroscan was 16.3 so really speaking next one should be lower hopefully
From my experience, dr said they prefer to give meds one year & repeat fibroscan. Long time to wait but I suppose that gives meds fair time to work.
And in actuality, I don't know why I'm freaking out.... I'm still doing everything I can to slow PBC down by taking URSO. It is what it is. I just got results from my ultrasound back as well as labs this past Monday... Only thing elavated was my Alk-phos. It's down 4 points from last time. It's 153. The Ultrasound was normal and biliary tree looked unremarkable doctor said. I was thrilled about this. But now I don't know how to feel.
I wonder how Shulsey is doing?? "Shannon if you read this, let us know how you're doing." ❤
That’s good your alp is coming down👍. What scan shows biliary tree? I’ve only had ultrasound & fibroscan. My alp is 132 for Jan & April.
I just had my 6 month Ultrasound. My doctor called and said it was normal and biliary tree looked unremarkable.
Very good. So I just need to ask about Biliary tree. When Internist sent me for ultrasound he said liver picture perfect.
Also, I had a car wreck in 2016 & they did ct scan w/contrast to check organs for damage from airbag. My Internist sent for that report & said all good. A little reassurance anyway.
I think of Shulsey very often. Would like to hear from her as well.
I have read from a reliable source, that some people who did not respond to Urso & were given OCA, their fibrosis score actually lowered. And that it stabilized some Cirrhosis. I don’t know which trial you are in but hopefully you will see positive results.
PBC Robert responded to my question which was... Can a person have normal Lft's still have cirrhosis? This was his response..
"Absolutely. I am sure there is a longer answer to another question. I hope that helps." Robert....
Ktltel...thank you for asking🦋
I guess my question is if levels are kept in normal range, then that hopefully will keep us from progressing with more fibrosis & scarring. But we should not progress to Cirrhosis with normal levels. I know that those of us with mild fibrosis have brought levels down but we still have the fibrosis. So understablw with Cirrhosis maybe levels can still come down but Cirrhosis is still there. I know what I’m trying to say just not sure I worded it right.
No... I get that. And that makes me feel a bit better. I hope that's what it means. ❤
Me too. You’re welcome 🦋
Yes. That’s correct!
Ellewoods33...I did send a msg to my drs NP about this. She said a lot depends on stage someone is when diagnosed & if there is already scarring and or damage to liver, and how well they are responding to drugs. Of course all studies were done with Urso. But if no scarring or damage at time of diagnosis, prognosis is good. And it is possible when there is evidence of scarring/damage, that the numbers can come down & stabilize. Made me feel better 🦋
Let us know. Here's hoping and praying for you kimphoebe❤
How you feeling these days?
I'm ok at moment but seem to be having some digestive issues so am waiting for a colonoscopy and endoscopy. They seem to put a lot of store in lab results but I'm not so sure, been on this trial for nearly 2 years now but they failed to notice I was anemic
Took my gp to pick that one up, so can't wait for my next trial visit in July to see why that one wasn't noticed. Just goes to show they only interested in certain blood levels. Will be having fibroscan on that day aswell so we ll see how that goes.
Normal liver enzymes mean liver still functioning well even in a cirrhosis or fibrosis phase! Liver is a big organ and smal portion of good liver is enough to work fully functional. In Cirrhosis and fibrosis liver enzymes can be dropped fresh cells decreases! More over it is the indication of urso working cleaning up liver and ducts..even the liver cancer patient has normal liver enzyme
Strange isn’t it! I know my disease is progressing but still normal labs give me hopes and enjoyment until my next visit 🤗🙏🙏
What stage are you?
Prayers for good days and good news. Enjoy each day as best you can and try not to stress. Easier said than done but that's what I try to do.
Remember, worrying is like a rocking chair. It gives you something to do but doesn’t get you anywhere. Give your worries to God. Be the best person you can each day and live your life!
Had labs drawn on July 6th and everything came back normal. Started my 2 month of Urso about a week ago...
Sitting & waiting to have the blood sucked out of me yet again. Have to be checked every two weeks for six weeks...
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