May have PBC?

[KathryH34]

Just trying to get my head around this at the moment and reading a lot about it. I suffered auto immune haemolytic anemia all my life and had my spleen removed in March 2009. Not long after recovery from the op I started to become very fatigued, achy, headaches very much like my anemia but it wasn't. Over the years I have been diagnosed with ME and Fibromyalgia.

I had an appointment at Guys a few weeks back and they ran loads of tests, I have tested positive for AMA, high bilirubin and Vitamin D deficiency. All other LFTs were normal/

Having learned this PBC keeps popping up, I am seeing my GP on Thurs to run through the results. The symptoms though are so much like what I suffer particularly the fatigue and muscle weakness.

Can I have PBC if other LFTs are negative though? and what would be the next steps for a proper diagnosis?

Thanks for any assistance/advice

[hopepbc]

Generally a liver biopsy is considered the gold standard in the diagnosis of PBC.

[Hidden]

As far as i,m aware you can have PBC with normal LFT's if you have AMA. You need to get your IGm tested too (a type of protein/antibody produced when you have PBC).

[Val02]

The AMA is highly suggestive of PBC, if they suspect PBC they should send you to gastro.

There are many more blood tests to be run, a scan and sometimes a liver biopsy (it seems to vary). If you are seeing your GP on thursday you need to make sure the AMA+ finding is followed up. Unfortunately not all GPs are very knowledgeable on PBC so sometimes we patients have to steer them in the right direction.

Good Luck

[KathryH34]

Thanks for your replies, I e-mailed him various information yesterday with my thoughts and asking if we should do further testing for PBC so fingers crossed he's pre-warned and will have looked a little bit into it...... or not!

[Hidden]

Normally as it was for me, an AMA positive test is normally sufficient these days along with symptons to diagnose PBC without having to undergo a liver biopsy.

Usually a biopsy is carried out if there is much doubt about a patient having PBC. You can have PBC and have normal LFTs and also be asymptomatic (no symptons of it) also. You may go on to develop symptons over time, you may not but if it is suspected that you do then you'll continue to have your bloods monitored.

[hopepbc]

Peridot is correct, Mayo clinic has stated a AMA positive test is now sufficient and the liver biopsy is not needed as a diagnostic test for PBC, the biopsy shows the stage and liver damage. BTW my levels were slightly elevated 3 years ago but I never followed up because I didn't want to take a liver biopsy, so here I am today, wish I dealt with this 3 years ago.

[KathryH34]

These were my results but no idea what they mean, trying to be patient to find out!

Anti-mitochondria IgG 160

Anti-mitrochondria igM 320

Mitochondrial Antibody SLE type

[skywalker]

I've been told by my Gastro that because I'm a AMA positive it is likely that I do have PBC given the specificity and sensitivity of AMA for the condition.

My LFT's are normal.

But I ache all over and fatigue is a real problem. I,m having another US scan soon, I don't know why, I think he wants to see if there are stones even tho I've had my gall bladder removed, it was diseased without stones.

I've had a crippling pain under my ribs/sternum since January, They have told me I have gastritis which causes that pain, what no-one in the medical profession explained was it might be my medication that is causing it... I take Venlafaxine which is an antidepressant and anxiety pill, but I've been looking into it, and gastritis is a frequent complaint, but not one doctor as suggested I stop it.

After my own research and listening to my own body, I have decided I'm coming off it, but have to wean myself off... God willing that bloody constant pain will disappear.

Coming back to PBC, From what I can make out, is I'm going to get it, but it hasn't caused enough liver damage to give me a proper diagnosis

What I would like to know is Does the AMA cause fatigue and aches and pains or does one have to wait for some liver damage!

PBC is so shady and complicated, I feel like a time bomb

[Kattyjones]

Hi

Just a quick answer as its 4am here and still no sleep.

My gastro man advised that most his patients with PBC generally don't show signs of tiredness or aches till they show signs of cirrhosis. But as he says all people are different and some medical practitioners think they know everything yet they are not known as GOD lol