Normal labs but so what!?

[Pamela4475]

Ok, I’ve been reading on pbc fb that some people are having completely normal labs but pbc is still progressing.... in fact this one is a bad stage four... she is on urso and was told urso can cosmetically affect enzymes but not slowing progression. Has anyone else heard this? I’m on urso and have normal labs.. doc repeats them every six months and I have my first fib to in December.... now I’m worried all over again 😞

[gwillistexas]

I have also been told just because labs are good doesn’t mean there’s no progression. But, my dr has said the bilirubin is true to liver function.

[Slm66 in reply to gwillistexas]

I had a liver transplant due to my bilirubin levels not my blood results

[Skypony]

Hi Pamela4457, gwillis makes a good point - some ‘LFTs’ don’t indicate the condition of the liver as well as others because they’re not measures of function. I was also told that bilirubin is a key indicator, along with albumin and a clotting factor, I think it was ‘prothrombin time’. It seems a shame for you to worry, can you perhaps speak to your Hepatologist or GP about these particular aspects? Best wishes.

[Pamela4475]

Thanks guys..... I see him in December for first fibroscan..... are those a good indicator also?

[Skypony in reply to Pamela4475]

On the whole, yes. In some circumstances they’re less reliable, like narrow space between ribs or high BMI - but the operator would tell you if these applied. They’re more accurate when measuring significant fibrosis than when detecting minimal changes, but still a tried and tested tool. Do let us know how you get on in December.

[Pamela4475 in reply to Skypony]

I will skypony..... md will do himself

[Katienharley]

I’m new to this diagnosis as well and this freaks me out a little. I was diagnosed with high enzymes and positive AMA, normal bilirubin and had a fibroscan of 5.2 which is good. I was sent on my way with a pamphlet and I big bottle of Urso. Blood tests every 3 months and a Hepatology appointment in a year.

Information I’ve received is just online and I’m not sure my GP knows much about this disease.

Any information from people living with the disease seems to be the only advice and info I can take confidently.

Thank you everyone for being the support us “newbies” need while trying to wrap our heads around all of this.

Xoxo

[Pamela4475 in reply to Katienharley]

It’s important for us to remember what this experienced group says.... I left my fb group.... this is just a better place... I’ve only been diagnosed since 2017 but who knows how long it’s been lurking 🤷‍♀️ but bili , pt, albumin is what’s really important and that’s what I take from this conversation.... so normal “other labs” not so much..... that’s what threw me from another post.....good education from this beloved group.... I can’t tell you how much support this group gives me and I love them 😍... hang in there Katienharley..... this group so good for us newbies

[Skypony in reply to Pamela4475]

Thank you from all of us! Despite having had PBC a while, I learn new things from this forum all the time, and this place feels like family x

[Pamela4475 in reply to Skypony]

It really does feel like family ❤️❤️❤️

[4pjx__]

I worry about this same thing! I did ask my hepatolagist last summer if my lft's are improving does that mean my health is also improving? His answer was "yes"! He also told me that lft's were VERY good indicators of how the liver is functioning. I guess the reason we need to do scans and ultrasounds is to kind of verify what the blood tests are saying. I read somewhere that the reason the blood tests show normal and livers continue downhill is because the livers are small (from the damage). This really freaks me out because a couple of doctors have told me my liver is small. One doctor told me my liver is small but the thing we don't want is an enlarged liver. That would be worse. It seems to me that if we were deteriorating we would be feeling like crap. I feel pretty good most of the time. That's the thing that gives me hope.

-Pam

[Skypony in reply to 4pjx__]

Pam, you’re absolutely right that our information comes from a variety of sources, not least how we feel! It seems sensible to live up to that measure, moderating our lives, and our thinking, only as much we have to. I guess we’ve also got the advantage of having been reminded how wonderful life is.

[Pamela4475 in reply to 4pjx__]

I feel pretty good too most of the time

[Hidden]

Pamela4474 - Are you a member of PBC Foundation? If not, please join for free. They host this site. You can arrange to SKYPE with Collette and talk through your fears. ButterflyEi, gwillistexas, and skypony are completely on it with their comments. I have no direct experience, but I hear from reliable sources that fb can distort facts in a way that alarms people. You perhaps need an entire, reliable interpretation of the facts to reassure you after your scary read. PBC Foundation can give you this, wherever in the world you are. Don't worry, do something. Get in touch with Collette today!

[Candy12]

Yes labs go up and down, it’s the whole picture of your tests, scans included overtime that gives the doctors the true picture of how your liver is doing. Do be careful what you read on the internet and where FB is a good social platform, I would be very wary about what you read on it. When you take URSO your doctors will determine if you are responding to it , that’s the important thing for you to remember. Everyones journey with PBC will be different. Take the advice of others who have also posted and join the PBC foundation where what your told or read is backed by there specialist medical team it doesn’t matter where you are in the world.

pbcfoundation.org.uk/

[cazer]

Yes I've heard that urso can reduce alp level and bilirubin but not actual cirrhosis.... Not sure how factual this is but the meds must be aware of this themselves if it's true.. So will have to look at other factors... Best cazer.

[cazer]

However it is the general trend of how you are.. E. G itching, nausea, if you have encephalopathy.... At the end of the day no one really knows how one person will progress...so there really is no point in agonising over it... Just be assured that they will be on the ball if you need a transplant... They ve seen so many people going through the process...

Yes you might have cirrhosis deveping but pretty sure you will feel ill if it's getting really bad.

I'm 20 years diagnosed and 2 years post transplant.... Towards the end before the txp I was asleep most of the day, freezing cold, couldn't remember a thing, muddled, terrible itch etc... So they could see I was worse.. Without a blood test...

Queen Elizabeth hospital Birmingham have been amazing... And I certainly had my worry patches... But they know what they are doing... Try to relax and do whatever you can to enjoy life to the full. Xxx

[Hidden]

Hi.

I was part of the Facebook PBC group's discussion Pamela4475 mentioned above - I'm sorry that our stories frightened you Pamela, but as Deb stated, we who have advanced to cirrhosis stage also need to voice our fears and concerns. I realise you aren't saying we shouldn't, but you are saying that it scared you and it's been that reason that I, for one, am reluctant to post, or even answer posts, in the Facebook groups.

Now to address the concerns raised in Pamela4475's post, re: normal, or near, LFTs and still progress to cirrhosis stage.

Remember, this is my journey and may not be the same as your's. I was diagnosed 30 years ago. I began taking Urso 25 years ago and within 6 months my LFTs were near normal. When my specialist first prescribed Urso he told me that they were not sure whether the Urso just masked the levels or that it slowed the progression down - in hindsight I think it is a bit of both. During the first 20 years fatigue was the only symptom that impacted my life. Ten years ago I began to feel unwell - fatigue became worse, bouts of itching began, muscle weakness etc. As others have mentioned, my specialist believed that nothing had changed because my LFTs had remained the same - after two years of complaining about my symptoms and getting a negative reply I changed my specialist, he sent me for an ultrasound which showed extensive cirrhosis, a subsequent fibroscan gave a reading of 30. So, in my case, yes, you can have normal/near normal LFTs and still progress. PBC is a progressive condition after all.

From my understanding, Urso was only ever considered to slow down the progression of PBC, not to stop it.

Again, sorry if my story frightens people here, but I believe that the more information you have about your condition the better self-advocate you can be.

[Pamela4475 in reply to Hidden]

Not one person has ever said you couldn’t post your feeling on anything anytime.... so I got worried which is also my right..... if we can have normal labs all the while progressing kinda defeats the purpose of doing labs. I’m a medical person and it’s just astounding that we can do panels and panels of labs all the while in some cases meaning nothing. I wasn’t so worried I had to go here and ask but I do trust this larger group to help me fill in the blanks so to speak... I am still concerned that both my well known Hepatology have said bili Ptt pt and albumin will tell you the health at the time drawn of your liver. I still believe that this is a sneaky disease and can affect everyone differently and since all of my labs have been in the normal range to hear that this may not indicate health was shocking. So sorry that you feel I must have said you didn’t have the right to post that since I got worried and that was never my intention... you post freely and I will post freely if I find something that worries me.... this is my favorite spot for support not the fb page as I have been here much longer than there.... again I humbly apologize for upsetting you. As everyone I know that has pbc, I don’t think anyone ever thought of urso as a cure but slows progression.....it’s a shame about the labs... would be nice to have some kind of indicator .

[Hidden in reply to Pamela4475]

Pamela, I'm not upset, really. I just chose not to interact with every post - I read them and then just pass on, unless there is something that I can relate to, Deb's post was one that I think needed to be said as many of us in the later stage are worried about scaring those recently diagnosed.

I agree with you about we all experience PBC differently. My cousin, for example, was diagnosed the same year as I was but had a very different experience than I have had - she suffered many of the symptoms before receiving a transplant 4 years ago.

Though the post below is somewhat dated it reflects my PBC experience: Please note that this was part of a "question and answer" segment of the PBCers Organization's website and it is no longer available.

"Howard Worman, MD

Division of Digestive and Liver Diseases

Departments of Medicine and of Anatomy and Cell Biology

College of Physicians & Surgeons

Columbia University

New York, NY 10032

December 1999

Question

Is it possible to be in stage 3 or 4 by the biopsy and have normal LFTs taking Actigall or URSO? Are the LFTs actual indicators of the disease progress?

Answer

I always tell the second year medical students that "liver enzymes are NOT liver function tests (LFTs)." The term "LFTs" is a terrible one and really should not be used. [Help me convince your doctors!]

The values of the blood ALT, AST, alkaline phosphatase and gamma-glutamyltranspeptidase (GGT) activities do NOT tell you about the function of the liver. They also do not tell you about disease progression (i.e. the development of cirrhosis or deteriorating liver function). The so-called "LFTs" can be normal in individuals with end-stage liver disease.

In contrast, they can be markedly elevated in individuals with liver disease but normally functioning liver. In PBC, ursodiol (Actigall or URSO) may lower the blood alkaline phosphatase activity in the setting of significant liver damage (Stage III or Stage IV histology).

The best biochemical tests of liver "function" are serum albumin concentration, serum bilirubin concentration and prothrombin time. In PBC, the serum bilirubin concentration (which may also be lowered by ursodiol) is probably the best biochemical predictor of disease progression.

"

[Hidden in reply to Hidden]

Just to add, my Bilirubin, Albumin, and Prothrombin Time have only been out of the normal range for around 10 months.

[4pjx__ in reply to Hidden]

Well crap! I wonder how come they put so much importance on the the lft's then? It kind of sucks to think you're doing okay when you're not! It would be interesting to know what percentage of people progress and what percentage don't. It sounds like there is a fair number that progress ...I have seen few that said they didn't progress. Or maybe the ones who don't have too many complaints don't post anything.

My heart goes out to you with the experience you have had with this. It's got to be beyond frustrating to suddenly find yourself with extensive cirrhosis. I am wondering if you have considered asking for Ocaliva ? It sounds like there are a few people out there in later stages that are trying it. Anyway, I guess I am a little curious if your treatment plan has changed or if you still take only Urso ?

Hugs!

[Pamela4475 in reply to 4pjx__]

I must have made my post confusing.... I’m not the one with progressing cirrhosis... I’m having my first fibroscan in December... my biopsy did say some mild fibrosis 2 years ago but truly my doc made me feel as long as my enzymes and the other left were ok then not to worry.... shocked to find out that may not always be true 😞 god bless those who had normal labs and now find out things are worse..... I guess I’ll know in December .... fingers crossed

[Hidden in reply to 4pjx__]

Ha, ha, "crap" was precisely the word I used when I first saw my cirrhotic liver during the ultrasound - to say I was shocked is an understatement,

Prior to finding that I was Stage 4 my treatment was only an annual LFTs check and an annual visit to my specialist. Since the discovery of the cirrhosis I have LFT checks every three months and and an ultrasound every six months - the only other medications (other than Urso) I have been prescribed are to treat the symptoms that accompany liver cirrhosis. I guess I'm saying I am now monitored more closely, and medications are added as new symptoms emerge.

[Pamela4475 in reply to Hidden]

Thanks for the info.... exactly what I was told earlier by this group.... bili , pt, albumin..... will know in December

[Hidden in reply to Hidden]

DianneS - and Pamela4475 - thank you for sharing as you have. It has been a useful discussion.

[Vivaldii in reply to Hidden]

Thanks for sharing your journey .....real info is always helpful x

[Pamela4475 in reply to Vivaldii]

It is

[PBCRobert Partner]

This may turn out to be a long post, so here goes...

First off, if you have not already done so please join the PBC Foundation.

Now to PBC. There are three parts.

1) symptoms. How you feel on a day to day basis. There are your PBC symptoms (fatigue, brain fog, itch, etc). These come and go with no real rhyme or reason and vary from day to day, month to month and person to person. PBC symptoms do not relate to the other 2 aspects of PBC.

If one progresses to cirrhosis, then there may be more symptoms but that is a bridges and crossings situation. Most people with PBC never develop cirrhosis.

2) liver biochemistry. Also known as bloods, liver tests or incorrectly LFTs. They measure various processes in the liver. e.g. All Phos measures damage and inflammation to bile duct cells. ALT and AST are an indication of liver cell death. They are a snapshot of what is happening right now. However, there are many aspects that muddy the waters. Break a bone and tour All Phos will jump through the roof. Tests change with a head cold, with food, during the day, etc. It is not that simple.

Alk Phos being lower is better for long term risk. Low bilirubin is good also. Raised bilirubin tends to indicate a short-to-medium term risk but that is a generalisation.

3) histology. Cell change. “Stage”. This is about what has happened to your cells UP UNTIL TODAY. There have been some tests that show improvement in fibrosis with both Urso and OCA but they are small studies.

These are very short summaries and there is so much nuance and context that could be added here. This is just an overview.

Everyone with PBC absolutely needs to monitor all three. They also need to speak to someone in the know. I am not sure how much clinical expertise is on these fb groups. I have seen the posts. Hell, I’ve even been kicked out of one. So what do I know?

Well, I have the to top PBC experts in the world on speed dial. So yes it is safe to say we know stuff. Which brings me back to my first point... join the PBC Foundation.

[Pamela4475 in reply to PBCRobert]

I joined when I was diagnosed 2 years ago

[gwillistexas in reply to Pamela4475]

Same here 😊. And no intention to leave either. Solid and supportive 👍

[Pamela4475 in reply to gwillistexas]

Very much so 😊

[gwillistexas in reply to PBCRobert]

Oh my!!! You kicked off? That’s unbelievable 😯. I promise something was wrong with them, not you. 😊

[Pamela4475 in reply to gwillistexas]

😂😂🤷‍♀️

[mrart]

Everthing you and your doctor does matters. I've had PBC for over 8 years. I had liver damage per a biopsy then. I take 1000mg of Urso a day, my labs are fine and my latest scan shows a completley smooth undamaged liver. Proof that PBC can be stoped and the liver can heal itself. I never drink, dye my hair, take otc meds that can tax the liver, etc. l do eat very healthy stay active and work at not worrying about what might happen and remind myself every day how grateful and happy I am with my life. I know it's challenging but try not to worry about others condition or what might happen and concentrate on your recovery and all that you can do to get better.