Worried!!!

[Flower-powr]

Hi all. Previously on a one off blood test it was noticed I had raised AMA M2 of 29. Above 9 is raised! My LFTs normal. Had bloods repeated four months later and M2 now 53 and GGT is twice normal. Waiting for hepatologist review. Any advice.

[Hidden]

Don't overthink this. Wait for Hepatologist to opine. It is too nerve wrecking to do what ifs scenarios. Do something fun to distract yourself.

[Flower-powr in reply to Hidden]

Thanks a mill. Any advice to prepare myself is Appreciated. It's hard not to worry but I know it's better to wait and see

[Hidden in reply to Flower-powr]

There is so much not in our control. Hopefully you have a great Hepatologist who you trust & he/she will be able to help you manage through it all. It's hard not to worry, but try to relax & think pleasant thoughts.

[Flower-powr in reply to Hidden]

Thanks a mill. Will do ☺️

[Andrei]

Morning.I remember that i read in the past that the nr of Ama in not corelated with the progresion of pbc.So if the blood is k do not worry too much

[Hidden in reply to Andrei]

My theory re the antibodies in PBC is that perhaps when they are higher the PBC is a bit more active and if we do have them tested (I won't even if requested) and found to be low then maybe it's on a bit of a slow down. Whether I'm right is another thing. I just don't bother as previously said.

[June9961]

I learned years ago when they first noticed I had PBC not to worry too much and go with the flow. Sometimes my blood results are better than other times but well out if the norm. Try not to worry. 😊

[Hidden in reply to June9961]

Me neither June9961.

I don't really bother about the bloods anymore. I did keep a track when I had done in the early days when they did start to drop for around 18mths on urso but then they sort of started to stick and then go up a bit and down a bit at repeats so I give up bothering and likewise I just go with how I feel.

[Hidden]

With PBC I personally don't even think about antibodies. I did have AMA and ANA took just prior to being diagnosed with PBC in 2010. I've never been requested to have one since and I don't care. If I have PBC I have PBC as I do and for me that is enough regardless.

[gwillistexas in reply to Hidden]

👍

[NotorDJP]

Antibodies after diagnosis mean very little. Even lfts are subjective. Albumin and bilirubin are what most watch.

[Angel_b]

Easier said than done but try not to worry. There are a number of people that are AMA m2 positive but never go on to have pbc.

But it’s great that you’ve been referred for further testing. Better if it turns out that you do have pbc to start urso as soon as possible. Do you have any symptoms? In the meantime, sticking to healthy eating and exercise (if possible) is the best for your liver. But most importantly be kind to yourself.

Best wishes

[Hidden]

After diagnosis, my Hepatologist hasn't run any of the antibody tests. I recall him saying that they will always be off because of the pbc. The thing he monitors is Alk Phos but in the hep panel, bilirubin & albumin is also tracked. So I think antibodies are useful for diagnosing just as Peridot noted.

[gwillistexas]

According to Mayo Clinic, positive AMA M2 is highly specific in PBC.

[badpiglet]

Hi,

Just to agree with Andrei's comment that the level of AMA M2 does not correlate to the progression of PBC. Yes, a high level is indicative of PBC but don't necessarily read anything more into having a high result.

From the following useful UK site:

labtestsonline.org.uk/under...

'The level of AMA is not related to the severity of PBC symptoms or to a patient’s prognosis.'

In some parts of the UK they don't even give you an exact reading, they just tell you positive or negative. And after you've been tested a couple of times, they may not test your level of AMA M2 again.

Be a little cautious about reading too much into levels of various LFT's as they do not necessarily tell you how your liver is actually functioning or about the disease progression. They may also fluctuate and also be affected by any medications being taken including URSO. Apparently serum albumin concentration (high for this is good, not bad) and serum bilirubin concentration and prothrombin time are the best biochemical guides to disease progression.

Definitely save your worry and concerns for your hepatologist. He's the one who can see the overall picture, your history and hopefully can answer your questions. It sounds like you haven't spoken to him before, in which case make a list of questions as it's pretty normal to forget everything once you actually speak to him. Try not to google or if you do, look at the date of any information (may be prehistoric and very inaccurate!) and try to only look at respected sites eg British Liver Trust, Cochran Lab, Wiley Library.

In the UK you can ask and get a copy of all your test results, if you want them. Look beside them and you will see the normal range, which may not be the same as any other lab in your country and certainly different from another country. Some people don't want to know their results which is fair enough, and for others, a little understanding may help with feeling a tiny bit more in control and hopefully more chance of understanding when your doctor talks to you. Horses for courses.

It may be hard but nycgirl2012 has given some really good advice - relax, have some fun to take your mind off things and relax again.