***Revision at conclusion***ALT, AST, Alk-phos and their possible insignificance in monitoring PBC progression?

[Ktltel]

Hello friends,

Ever since I was diagnosed with PBC last year I've been anxious everytime I have my labs drawn. I'm always anxious to know all about what my Liver Function Tests (LFT's) numbers are and if they're rising.

When I joined this group many were concerned about elevated AST, ALT, and Alk-phos etc. So I became the same. And over this past year my Alk-phos has fluctuated. This last lab draw it was slowly climbing. 😔

Over the past year in all my research about PBC I've come across lots of good information. The informative posts on this site are of vital importance too and so many of us appreciate them. ❤

I often copy and keep posts to re-read over again or to share with my doctors. This is what I was doing when I came across a post (sorry I didn't copy who posted it😕) that I had read earlier several months ago and that only now has really sunk in. (Brain fog??)

It had to do with those LFT's that I've become so consumed with watching. And to be fair, they do serve their purpose giving our doctors rounded out information. However, this post stated that those LFT's were not a prediction of PBC progression. It stated that even ones in later stages of PBC could have normal or close to normal AST, ALT, and Alk-phos.

It said that liver enzymes were NOT liver function tests. Somewhere over this past year I confused the two. I even perpetuated the belief by my own posts that Liver enzymes and LFT's were the same thing. Even now I can't get it out of my head that my Alk-phos isn't something that I need to watch like a hawk. It's hard to un-learn.

The post stated that the best biochemical tests for liver "function" are ...*serum albumin concentration, *serum bilirubin, and *prothrombin time (that last one I've never seen on my labs).

It concluded by stating that the *serum bilirubin concentration (which may also be lowered by Ursodiol, yay!) is probably the "best" biochemical predictor of PBC disease progression. It also included this link.

Pbcers.org/support/drpanel/..

The poster concluded with her own personal information which I found comforting and hope you do too. She said,

"I am Stage 4 with stable LFT's diagnosed 27 years ago."

So while I, ktltel - Stella, (out of habit) still check out my AST, ALT, and Alk-phos, I will now most importantly be watching my Albumin and bilirubin. ❤

Thank you to that poster!❤ I've been a little slow on the uptake.

Stella ❤

**Revision: Please note that recent information stated that a rising Alk-phos does give indication of possible PBC progression. New and ongoing studies and trials are difficult to keep up with. If you are uncertain about the role a rising alkaline phosphatase can mean in your PBC case, please ask your doctor about current or new information.**

[Hidden]

I think you're fine. Your doctor reviews all your labs & will let you know if something is of concern.

[Ktltel in reply to Hidden]

nycgirl2012,

I just feel bad as I'm always posting about my alk-phos... watching it..etc. So many new ones, like I was once, copying that example.

I hope whoever originally posted that will let me know who they are. ❤

[Hidden in reply to Ktltel]

I knew several years ago that the LFTs weren't exactly what they are said to be but they are an indicator as to something can be wrong. LFTs also become abnormal with bone issues too. Back in 2010 the year I was diagnosed I had to have a seperate test as to whether the problem was bone or liver related.

It's usually bilirubin and I think albumin that are better predictors in PBC. As far as I understand it the bilirubin can start to continually rise and then the other one starts to go haywire at some point if that is the way the PBC is progressing.

I have also read that the LFTs can return to normal even if one has cirrhosis.

I've never got hung up about my bloods even if they are still said to be above normal range and I go off how I am feeling. I think it is true to say at certain stages in PBC when we are having relatively little going on and our doctors seem happy each visit and we've no other issues that might be linked we have no idea really with regards to the bloods. I have always thought the urso somehow 'fudges' the figures anyway but at the end of the day if it helps taking it then so be it in my opinion.

[Ballymahon2 in reply to Hidden]

I agree i dont understand a lot of these lab results so i just trust the doctor on this

[Ktltel in reply to Hidden]

Ballymahon2, please see my revision above. New information has stated rising alk-phos may be indicative of PBC progression.

Stella ❤

[Ktltel in reply to Hidden]

nycGirl2012,

Please read my revision above in my original re-post.

[Hidden in reply to Ktltel]

I think in general, alk phos, bilbirubin, & albumin are monitored along with LFT's. LFT's are a misnomer since they don't reflect the condition of the liver, only whether something is amiss or not. In later stages of chirrosis it can even appear normal. That is one of the reasons why pbc is so challenging to diagnose from the usual blood work done as part of health maintenance. This is why it is important to seek out a Hepatologist because they will know which additional tests need to be run.

While you should be aware of your test results, trust your doctors to alert you of any concerns. If they are not concerned, you should not be either since it is their jobs to know this stuff. 😀

[Wilmahair]

Thank you Stella. That is very good information. 💕

[Ktltel]

Wilmahair,

The "important information" is from a veteran PBCer. I failed to copy her name. I sure appreciated finding that information again. Hopefully anyone I steered the wrong way will read that and re-educate themselves. ❤

[Hidden in reply to Ktltel]

My dr told me that he didn’t care about my alp. He pointed out my igg and thank god that it was in normal range. It was high at first. With aih he’s more concerned with my alt. But you know Stella, all that we can do is try to be healthy. Ultimately we have no control over our enzymes. My husband had a long conversation with my dr about how someone could be stage 4 and in failure with normal enzymes but I don’t remember what he said.

[Ktltel in reply to Hidden]

Jenny,

I know what you mean. It's hard to believe that about LFT's when one is in stage 4 but it's a fact. PBC is a sneaky disease!!

❤

[butterflyEi]

Hi Ktltel

I have copied your post to use as a reminder. Thank you for sharing Stella this is useful information.

best wishes

[Ktltel in reply to butterflyEi]

ButterflyEI,

Please see the revision above on the original re-post.

Stella ❤

[gwillistexas]

I have combed through all labs & I also have not seen prothrombin time. I’ll make a note & ask at next weeks visit. Thanks for this helpful info😊❣️

[Ktltel in reply to gwillistexas]

Gwillistexas,

There is a revision above on this re-post.

Stella ❤

[Jeanb47 in reply to Ktltel]

Just a note.

Prothrombin time is abbreviated to PPT and along with that PT.

I’m a nurse so I’m use to seeing it on lab results.

My standard req for blood work has both done each time.

Jeanette.

[gwillistexas in reply to Jeanb47]

Tks! I will look for it. My Internist runs CMP & CBC once a year, sooner if something is off. I’m due both those end of this month. Appreciate it😊

[Ktltel in reply to Jeanb47]

Thank you Jeanb47,

Good to know. Hope you're still feeling well.

❤

[ILik3Pizza]

Thanks for sharing your new perspective! You are absolutely correct. In addition to bilirubin, we also have to keep an eye on our AlphaFetaProtein Tumor marker. My doctor clarified something about PBC at my last check up: I thought our bile ducts were being destroyed and yet my ultrasound always show that my bike ducts were normal. PBC occurs WITHIN the liver and it’s microscopic. Gives new meaning to “rotten to the core”!

[Ktltel in reply to ILik3Pizza]

ILik3Pizza,

What I posted was a repost of what DianneS, a long time PBCer posted a while back. I finally found the original post she responded to. 😊

Yes... It's the bile ducts "within" the liver. At least there are some markers to be monitored. Fibroscans and sometimes biopsy can give doctors some idea what's going on.

It's a mostly a silent, slow progressive disease. Gotta keep on top of it. Keep up with labs and tests.

Stella ❤

[ILik3Pizza in reply to Ktltel]

I remember DianneS — I think she was from Australia; she always have good insights. I’m not sure she’s posted lately.

[Ktltel in reply to ILik3Pizza]

Ilikepizza3,

Yes, she comes in and comments on others posts which I read too. I value her insight. She's a longtime PBCer. And is very encouraging.

Stella ❤

[Ktltel in reply to ILik3Pizza]

Ilike3pizza,

Please read the revision above on the original re-post.

Stella ❤

[Sachin1234]

lft has alt,ast,alp,total Albumin,total bilirubin test and pt/ptt which is a part of liver test..bile ducts which will be destroyed slowly in pbc for that alp is the marker or indicator so nothing wrong with your concern..glad you are learning more and more and so am I..

👍🏼🙏

[Ktltel in reply to Sachin1234]

Thanks Sachin1234,

It's hard to keep up with every study and article that comes out about PBC. I'm learning so much. My doctor says she's learning from me. Ugh!! That's not to reassuring. Lol.

[Sachin1234 in reply to Ktltel]

It is fairly a new disease even it was discovered long time ago due to rarity of these..now medical field realized they were wrong diagnosing this disease previously and after they change their criteria he’ll break loose 1 women out of 100000! That’s good you are learning and your dr is learning about it 👍🏼

[MaireO]

Thanks for that. It makes sense to me now as anytime I worry about my bilirubin and alk phos levels my consultant always points out how good my albumin looks and I should be comforted by that

[Ktltel in reply to MaireO]

MaireO,

Absolutely!! Celebrate those good results!!! 👏👏👏

[Hidden]

Thanks for posting, I always believed it's how all the tests looked together with any scan results that were important for evaluating any progression, not one individual test on its own, my ALP has fuluctuated up and down over eight years between 180/279 but Iam still considered stable as all other results are normal. I read somewhere that ALP can be normal in end stage liver disease so it's possibly not the best marker on its own.

[Ktltel in reply to Hidden]

Thanks candy12,

Have you been on URSO the whole 8 years? I keep reading that we should be looking for URSO to really lower our alk-phos. I've been on it 8 months and it isn't lowering it. Mine fluctuates too. Nice to know I'm not alone. Are you on Ocaliva as well?

Stella ❤

[Hidden in reply to Ktltel]

Mine did lower, to 279, that was after 6 months on urso... PBC -Uk say it's a good result if your ALP is no more than 1.67 X the ULN(upper limit of normal) . ( I will try and find where I read that) other reasearch say 2xthe ULN is in a good place so I try not to worry about it.

Yes I've been on it 8 years and last year I had my first fibro scan that, was in the normal to mild range.

No not on Oclavia not sure I'd want to take it at the moment I tend to sit on the fence with it, with all the coverage about the dosages.

Take care.

[Ktltel in reply to Hidden]

Candy12,

I understand that. It's a new drug. We should be concerned.

Hope you are feeling well. Everyday that we are feeling good is a good day in my book!

❤

[Hidden]

Hi Stella and everyone,

I'm the 'culprit' Ktltel is talking about - I was diagnosed almost 29 years ago, am now in Stage 4 (with a Fibroscan score of 30) and with the lowest, and best ALPs and GGTs, I've had since diagnosis. I have blood tests every three months now, and whilst my Bilirubin is just within the high end of 'normal', and my Albumin is below normal range, my ALP and GGT levels remain just outside 'normal' range.

NOTE: The above information is my experience, and will not necessarily be the experience of everyone here. We are all different and PBC reacts differently with each individual.

Stella contacted me, via a private message, about this new information and I did a bit of a 'google' search - I have given Stella the information I found, but as this is her thread, and concern, I will leave it up to her to post the relevant information.

Take care

Di

[billhunter]

I have had pbc 10 plus years. I regard lfts as SYMPTOMS- the observable EFFECT of pbc. I don't like them high. However I regard Albumin and Bilirubin as more important. I consider these as if I'm asking my liver - "how are you?" Falling Albumin or rising Bilirubin are, in my view, the liver saying "I'm feeling worse". William

[Ktltel in reply to billhunter]

billhunter,

I like that analogy👍. What was your condition when you were diagnosed and how are you feeling these days?

Stella

[billhunter in reply to Ktltel]

Thank you. Like many I was tested for cholesterol and started statins 2006. Routine lfts were high. Spent 6 months being accused of excess alcohol! Finally big apologies - Dr had missed the PBC test! I don't want to bore you but URSO did not work for me - results rising. As a scientist I looked at research, finding evidence in 2011 that fibrates might help. They have! So I've saved 6 years of worsening results as URSO at that time was the only recognised treatment.

How am I? Stable but elevated results. Take lots of exercise. Extreme tiredness so go for a lie down quite often, some itch, bit of brain fog, sometimes dry eyes. Monitor own health and tell my Dr what tests I want! He knows not to patronize me!

Life is what it is. Everybody has something wrong. Look at what I can do not what I can't.

What about you?

William

[Ktltel in reply to billhunter]

Bill hunter,

Fibrates? I'll have to look into that. Sounds promising. I'm OK... So so. I was diagnosed early stage PBC last Oct. 2016 but my doctor says I've had it years longer. I'll be having my first fibroscan the end of Feb.

Just recently my alk-phos is on the increase. Slow but steady going up. I've been on URSO 8 1/2 months (generic). I'll be starting the real drug URSO Forte Dec. 11th. Not sure it will make a difference.... still gonna give it a try.

I too have brain fog... very dry eyes. And earlier this year I was diagnosed with 2 more AI's (autoimmune diseases), Rheumatoid arthritis and De Quervain's tendinitis. Taking meds for those and so far functioning nearly pain free.

I can't complain. Nice to meet you. I've never met a scientist before!

Stella

[billhunter in reply to Ktltel]

Thank you. OK so now approved is Ocalava or whatever for URSO non-responders. But I've heard of bad side effects. So I'm sticking to fibrates (Bezafibrate 400mg/day). These are cheap as chips as we say in the UK and are used for many ailments and as far as I know are safe. I believe that before too long they will be officially approved for PBC. William

[gwillistexas in reply to billhunter]

billhunter...I have been on Ocalvia since September with no side effects.

[zinchunter in reply to gwillistexas]

That's great news😊. But right now I can see no reason for me to change from URSO plus fibrates. William

[gwillistexas in reply to zinchunter]

Well, I wouldn’t be on Ocalvia except I had allergic reaction to Urso. Glad you can take it😊