AMA positive with symptoms, and normal liver function tests

[skywalker]

Which scan is the best for helping to diagnose PBC?

[Jackie07123]

Hi. I saw a liver specialist at Kings College Hospital this week who told me that to diagnose Pbc you need 2 out of 3 of the following:

1. AMA antibodies

2. Abnormal liver function test

3. Family or extended family who have any autoimmune condition

Hope this helps.

Jackie

[nellysarmiento in reply to Jackie07123]

thank you all this information is reassuring NS

[skywalker in reply to Jackie07123]

Hi Jackie

How long ago was that? I do believe they're diagnosing on the AMA only now! But need to clarify this with the PBC Foundation!

Thankyou for your speedy responses ladie's xx

[Hidden]

Hello skywalker.

Apparently you can have normal LFTs with PBC. Normally the LFTs are normal and can perhaps over time start becoming elevated. My theory with this is that it depends on environmental factors prior to knowing one has PBC as sure everyone else on here can vouch, once you have been informed you have it, can at least try to deal best with it as one can. (I was never much of a drinker prior to diagnose but once I had the first abnormal LFT 8mths prior to diagnose (2010) I didn't have any alcohol and have not since to alleviate any additional stress.) PBC treated with urso can make a difference as I have found, it can improve and even bring back he LFTs to what is considered a normal range.

Usually symptons are taken into consideration when a patient visits the GP for the first time. In my case it was the itch as I didn't think fatigue and tiredeness would have been the sole cause for me to see a doctor.

As various bloodwork was undertaken with negative results, all except continuing elevations of the LFTs I first had an ultrasound scan of the liver and abdomen area. The scan showed in my case that my liver looked quite normal and no other apparent problems. Repeats of the bloods and also one known as GGT were still proving abnormal so after at the time a final blood test for Wilson's Disease (which is excess copper), I was referred to a consultant.

That only took a further 13wks but as we know the NHS can be slow...... The first blood test that was undertaken was an AMA (along with an ANA) and another 2mths wait for the results that for me proved I had a high titre of AMA to diagnose PBC. (I was negative for ANA.)

Had I not have had a positive result for AMAs then the next stage would have actually been to have a liver biopsy as that can normally prove a person has PBC.

If there is a scan for diagnosing PBC then the only one I can think of is the ERCP that shows the bile ducts.

Prior to the AMA test years ago a liver biopsy would have been the norm to diagnose as I have read. I have not had a liver biopsy, personally now I can't see the point but it would have been a different scenario had I have had negative antibodies results.

[melisab]

I was told (by several drs) the only way to truly know if you have PBC is to have a liver biopsy. That way you know what stage you are at and it also helps for peace of mind!!

[Val02]

I think a biopsy is often used if your liver isnt looking to good on the ultrasound. If all looks ok you probably wont have one. Depends a bit on who you see. As melisab said,the type of damage related to PBC is quite distinctive so I guess could be used if an area of doubt.

[Hidden]

Sorry but I have to disagree with the PBC with regards to having a liver biopsy.

In reading up even prior to diagnose when I stumbled across PBC I noted that in American in particular it seems more than likely the norm for people who have even been diagnosed with PBC to then have a biopsy (there's a Dr Palmer think she is on a site talking to a patient called Emily who tested for PBC via blood but was then informed a biopsy would be undertaken 'to stage PBC').

Before I was diagnosed I had some tv on and happen to see a medical piece and 2 patients, one was quite obese, the other a man in 50's who had drank heavily for many years. From these live ultrasounds it was deduced the obese man had fatty liver and the man who drank had reached the cirrhosis stage. Now if this was the case then personally I wouldn't deem it a necessity in a PBC patient actually having a biopsy.

Nowadays with bloods it can be pretty accurate to gauge how someone is doing with PBC and possibly further ultrasounds and to me, I'd not want to have to go through having a biopsy to put further strain on my liver as the site has to re-heal after being punctured. It has also to be noted that it can be misleading too with a biopsy as what one shows doesn't actually give the whole result of the liver, it could be damaged in one part and not another.

I have not thought about this staging myself. I'd rather just get on with getting by day to day, week to week without causing myself unnecessary worry now for something that might never become.

[nellysarmiento in reply to Hidden]

Information is very helpful 3 weeks later still no news of any appt

ns

[elianan54 in reply to Hidden]

Val02. I feel exactly the same.

Was told i had PBC (13 yrs ago) and straight away was offered biopsy. I didn't feel it was necessary as it was only through routine blood test that it was found i had PBC, and i had no symptoms. Only a few months ago I started to have some symptoms. I still wouldn't have a biopsy. Apart from the trauma endured by the already ailing liver, i know it's a very painful procedure because my brother had it done while i waited in the corridor of the hospital unit for him. He's a big fella, but i heard him scream. He said it was incredibly painful.

I'm sorry, i don't mean to frighten anyone, justs giving truthful info that might help people make informed decisions.

[Hidden]

Peridot is right, biopsy is not neccessary for diagnosis of PBC, elevated ALP, GGT and positive AMA are sufficient for diagnosis. But you can be positive AMA and have normal LFT but it ususally means you are stage 0 of disease and the elevations will come later. Biopsy is for staging of disease. My specialist here in Spain told me it was not neccessary, at the stage I am at (between 1-2) to do one. Personally I'm happy with that at this point. It can take a long time to advance from one stage to another, sometimes 10 years, why put yourself at risk of biopsy. As Peridot says your LFT's will give a good indication of how it is all going on in the liver.

[nellysarmiento in reply to Hidden]

I will take this in mind

thank you

NS

[Elizabethpr in reply to Hidden]

Saludos:

Es la primera vez que escucho a alguien hablar del tiempo aproximado en que la PBC pasa de una etapa a otra. ¿Dónde has obtenido esa información? ¿La encontraste en la literatura o te lo informó tu hepatólogo? ¿Dónde puedo conseguir ese dato? Yo no sé en que étapa me encuentro y mientras pueda monitorear mi condición sin necesidad de biopsia... nunca me practicaré una.

[kosy2 in reply to Hidden]

Some information I found on another PBC web site. It was in the Q&A section with the answers written by various liver doctors.

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.

Just my 2 cents - I have never taken URSO, biopsy showes stage 3 and since dx of PBC in 2011 have LTF's that fluctuate between NORMAL to high 600's. My opinon is like other autoimmune disease there are times when a person will experience "flair ups" that can last for weeks or months, sometimes even years and then things settle down for a while and then the pattern repeates it's self. When my LTF's are elevated it is only a signal that I am experience a flair up. I will not be alarmed until I see a steady increase in my serum bilirubin.

To me most people with PBC are too worried with LFT's when they don't need to be. When dx with PBC you really only need to make one decission - to take URSO or not. Like it or not there is not cure for PBC and it is a progressive disease. For now doctors do not know how slow or fast each person will progress. If you really think about it LIFE is also a progressive disease - someday we all will die.

[elianan54 in reply to kosy2]

What an absolutely outstanding post !!! Thank you so much Kosy2 !! You seem to have answered ALL my q's in this one post. I'm so grateful.

I was diagnosed PBC 13 yrs ago, i was then and have remained since then healthy with no symptoms until a couple of months ago.

All this time, i had LFT's done every 6 months under a liver specialist, and it was noted that there was continual but really slow elevation of enzymes, and not anything to cause any real concern. My specialist told me that, not only is PBC the most benign of all liver diseases, but that i would probably live a normal healthy life so long as it continued this way.

With recent gastrointestinal problems on and off over recent months, it has been seen that my LFT's are showing raised Serem Creatinine, ALP"s, Serra Gamma GT, Sera AlanineTransaminase, and Corrected Calcium.

However,.....albumin concentration, and serum bilirubin concentration are LOWER than normal !

Also, i have had "flare up's" over these many years, and even used that very same term to describe it to my doctor, which after days or weeks will pass, and may not return for a long time. This has been my pattern. Although i have PBC, i think my symptoms now are more like IBS than anything to do with my liver, though i'm still waiting for more tests.

Other than the mild nausea occasionally, bloating and tummy pain, i well and healthy. I'm 64.

[skywalker]

Thank you ladies

For your replies. I don't want to wait for my enzyme levels to rise. That is why I'm going back to see my consultant, because I itch, get the mottled palms and my joints can feel sore, but the worse symptom is the fatigue...

I understand through reading posts that biopsy is outdated now and scanning is best used for examining the liver!

Have you read the bear facts, it states that pbc is diagnosed now with AMA in patients with normal liver tests and no symptoms, which has made me sit up and take notice!

I've just had to have gallbladder removed because it was diseased but no stones were detected!

and now I've been diagnosed with gastritis which causes me a lot of discomfort. I also have vitiligo on my stomach which appeared around the same time as the AMA antibody!

I hate being in limbo, my consultant said in a letter to my doctor that if after several blood checks that turn up normal, not to even bother continuing with them!!!

I think I may have something to say about that now!! It seems as though as science is moving on the goal posts have moved

[shakira10]

Hi could any body tell me what the normal Bilirubin level is? Mine says 7?? As ive researched though im seeing levels showing a number then point an another number ??

[Kevin733 in reply to shakira10]

Normal levels are 0 to 0.3 (direct) and 0.3 to 1.9 (total).

Source: National Institutes of Health, at nlm.nih.gov/medlineplus/enc...

[badpiglet in reply to Kevin733]

Hi Kevin,

You may have missed that Shakira's post was 2 years ago and she's in the UK, not the US.

A useful site for info on tests in the UK is

labtestsonline.org.uk/

The best way of finding the reference range in the UK is to ask for a written printout of your tests and the range will be printed beside it.

Reference ranges/values vary between laboratory to laboratory, population to population so it is essential that someone wishing to know what is a normal result, looks at the range given by the actual lab that did their test. The result must be considered within the context of personal circumstances, past medical history, current medication and the results of any other investigations.

[elianan54 in reply to shakira10]

0-21 according to my liver specialist's data.