anyone's LFT's go up and down, from mildly elevated to even normal?

[amandarosas]

Is it common with PBC for your LFT's to go up and down and even be normal at times?

[kosy2]

My LFT's go up and down all the time. Sometimes within normal range and sometimes as high as 786 and any where inbetween. I do not take URSO.

[amandarosas]

WOW really? Im new to all of this, and I've NEVER had a ALP over 100. However I think my situation is a lil different in the fact that I have fibrosis, and my biopsy showed cholestasis. I think my bile ducts have already been destroyed, so if I've ever had really high ALP I'm not aware of it, or never had blood work done to show it.

[kosy2]

The following is from PBCer's a group in USA. It was part of a Q & A section - the answers are by doctors specializing in PBC.

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 kosy2]

I also read that the terminology liver function can be a mistrued also.

What the readings apparently indicate is possible liver damage but as I understand it, bilirubin is the one that is important as you have stated.

Also with progression in liver conditions as there are others besides PBC as we know, others are noted that are quite normal in early stages (ie blood clotting time for eg of which you have also mentioned here as prombothin).

Given the liver can repair itself to a certain extent, I personally conclude that that is why the bloods go up and down as in early stages of a liver condition I am confident in stating that the liver is still pretty good in attempting to repair itself.

[amandarosas]

thanks.... thats some really good information. It makes alot of sense, but Im afraid MOST Dr's dont live by this. I had many many Dr's tell me NOTHING was wrong with me bceuase my LFT's were just barely, and I mean barely elevated. However Im seeing a excellent liver specialist who requested a liver biopsy which showed " INTRAHEPATIC CHOLESTASIS". So to my surprise, I could very well see how this information you just gave me can apply to me. Usually people with cholestasis, should have a very high ALP, but mine is only 100

[kosy2 in reply to amandarosas]

One thing I have learned is the is no USUALLY when it come to PBC.

[amandarosas]

lol Yes I'm starting to realize that. It would be nice if more Drs were educated on that. Like I said before, many Drs even my primary care Dr dismissed my problems as being NOTHING, just based on a damn LFT test.

[Alley27]

Doctors...you can't live with some nor shoot em lol....I can imagine there are many a confused PBC/AIH patient across the world. My consultant saw me on 5th July...it went ok. My LFT's were normal when I had my previous bloods done which was 8 weeks before this last appointment simply because I was not given enough forms for my blood tests so I could go to my Gp and get them done every 2 weeks as she asked. I had an appointment the week after diagnosis, and was toldthat I would need to go back in 4 weeks..it turned out that it took 12 weeks for an appointment.

When I went to see her on the 5th, she did more bloods and I had to get them done again 2 weeks ago..she rang me on Monday telling me my LFT's are in the 300's again which showed in the last blood test..but she did not say if it was bilirubin so I am going to ring her later to find out. All I know is that she decided to lower my steroids gradually.....which I was so happy about because I am tired of the weight issue and moon face..and on monday she told me I have to go back onto 20mg per day..I am so unhappy about this.....she also said I really should be on azathioprine.....which by the way has taken 14 weeks do the essential TPMT test to see if I can actually take them and to top it all off she cannot find my blood results..she has had to get onto the lab to chase them up...there has also been 2 done to check for diabetes; my glucose levels sometimes reach 16.9, and according to my Gp I am not diabetic; plus stool sample because I have diarroha every day these also have gone walk abouts.

I have recently started taking Urso..but if I am honest I think this has all been too slow, I should have had the relevant TPMT testdone before I was discharged from hospital and been taking the azathioprine from the beginning.....If it is my bilirubin level that is raised then it means my disease has progressed a little and that is worrying.

I wondered if any one else has any new symptoms orareasof pain/discomfort? I know I am waiting to have my gall bladder removed and the pain associated with that is obvious as it radiates into my right shoulder....but I now have an odd pain/ache in my leftside just under my bust which radiates into my back..this is new and I have had it about 3 days now, any suggestions from anyone.

I believe doctors don't know enough about our conditions....but they are learning from their work and from their patients...I just hope my life can be back to normal......I am sick of feeling unwell...and a transplant is way, way off for me perhaps not at all....I am over weight because of the steroids, and obesity is one of the barriers to transplant...they know this is a barrier..but they still use steroids...they need to find a non steroid medication that does the same thing...I am a fighter and am looking at everything I possibly can to help my liver I am also bordering on a vegan diet to see if that helps..there is also an anti inflammatory diet which may be ok for us with liver inflammation.

Next week am going back to swimming and the gym...I have to because on so much steroid I need to either keep my weight stable or get it off...trouble is...some days I have no energy lol...but wee can but try.

Love to you all

xxconniefused

[littlemo in reply to Alley27]

Hi there not so nice having two conditions to deal with. Re the pain it could simply be a colic( trapped wind) type pain, people with gall stones often have widespread pain around abdo(tummy/stomach), ribs and upper back usually as you say right shoulder area. When you get it, move about plenty r better still get someone to give ur back a good rub ( like u do with babies to get their wind up!) and this will shift the wind (i.e. gas to u American folks). Also I have just put a hot water bottle to area and this has also worked a treat.