Hello there. Can anyone tell me whether AMA positive antibodies without other significant liver abnormalaties means you have PBC or not? I seem to be reading conflicting accounts. I've had both itching and extreme fatigue
Also, in the U.K., what are typical diagnosis times?
Thanks for you help xx
Hello cath1917.
I have to say I cannot say for certain. Back in early 2010 I started itching and though I wasn't quite aware I did have fatigue (I just assumed I was tired due to long working hours for some time), I took myself off to the GP surgery (I am in the UK too) and he did some blood checks. I'd not seen a GP since 1999 nor had any prescriptions in that time. I was 45 then. He came back to me and said the liver function test (LFTs for short on here) were higher than normal and he continued to udnertake other bloods over the months.
I then had a scan that showed up pretty much normal. I was referred to hospital in July 2010 but my appointment took 13wks to arrive. I didn't have any antibodies checks at the GP surgery and had at hospital on my first appt. A month later I got a call from the GP surgery asking me to go in. I was informed that I had PBC, the consultant had wrote to my GP and asked him to prescribe ursodeoxychlic acid. I then received a further hospital appt and that was early February 2011, my first following diagnosis.
Personally I think that I could have been diagnosed far earlier but the GP was not familiar with PBC but he did follow the NHS pathway (I once found online) regarding blood checks and the results (they tended to come back negative. I did have one to determine whether bone or liver related as you can have above normal LFTs with a bone issue).
From what I can understand (I got the consultant's letter), it seems that the AMAs (anti-mitochondrial antibodies) have to be of a certain titre (measure) for diagnosis.
Have you seen a hospital consultant since getting these results or are you waiting to see one?
Hello there, I saw a rheumatologist, but they said they would need to speak to a liver specialist, and was really more concerned about Lupus, which I'm sure I don't have. As you can imagine, I'm really hoping this doesn't develop into PBC. I shall wait and see what he liver specialist suggests... And bury my head in the same until then!!! 😃. It really does help speaking to you guys. It's very reassuring to know, that even if I do have it, people are around who will be able to point the best way. Thanks again xx
I don't think there are typical times to diagnosis for me I had only slightly raised LFT, and the tests were repeated monthly for 3 months by the GP, who due to other tests thought I had glandular fever.
It was only after the 3 months that he referred me to the hospital consultant as a precaution, who tested the bloods again that was when I was diagnosed. So it was 7 months in total.
If the AMA was discovered by blood tests done by the GP, I think he should be making a referral to a consultant given you have itching and fatigue.
Hello there. Yes, the GP did the tests because of my extensive itching. They have referred me to a dermatologist and a rheumatologist. I saw the later recently, but he said he would need to speak to a liver specialist. He seemed more worried about Lupus, which I'm sure I don't have. Thank you again, and good luck xx
Hi, abnormal LFTs during summer 2016, I had just been put on statins so the tests were repeated in case new meds. Still off so more blood tests to rule hepatitis etc, when clear more tests for rarer causes and an ultrasound by October, that leading to MRI scan which is due this week as hospital lost referral, blood tests show AMAs in December leading to referral to Liver unit, appnt mid Jan but in wrong clinic so rescheduled for Feb, but got a cancellation appoint last week and PBC confirmed. So AMAs in blood test to diagnosis a month. but would have been two, altogether less than six months.
Thank you for replying and sharing your experience. It really does help having others to speak to.
I am very, very new to all this too and am so grateful for this group and the PBC foundation, I've learned a lot and got some great advice! Best of luck to you!
I've had AMAs for about 24 years now, and still don't have PBC, although my liver function tests (lfts)are taken every year - nb they are still perfect.
However, I don't have any symptoms, at all. As you do have itching and fatigue it is possible that PBC is in an early stage, but has not yet altered your bloods. We are all so different, and you will need tests and careful monitoring. They may offer you a liver biopsy, as this is considered the 'sure' way of confirming PBC.
I was first told I had AMAs, in 1992, but after extensive testing and examinations by both hepatolgists and rheumatologist, I was just told to have lfts every year. At the time PBC was never mentioned, and I had no idea I was at risk of anything serious - my GP just said vague things about rheumatoid-ish complaints maybe developing, eventually ... Nb this was all pre- internet! After about 12 (?) years I was told to stop the tests, as I would: 'never get anything'.
Then, in 2008, a new-to-me GP, in a new area, panicked when I mentioned AMAs, and I was sent to see a liver chap. More tests and checks, and he did at least explain PBC, but said I didn't have it - yet - but would probably develop it. Unfortunately, when I saw his letter, he had 'diagnosed' me as having 'pre-symptomatic PBC' which as far as insurers were concerned was PBC, and I then had lots of trouble with insurers, while my GP was saying I didn't have PBC, as loads of people just have the AMA antibodies. After about 7 years of being worried - yet still without symptoms or any abnormal lfts - I asked to see one of the country's leading PBC experts, even though it meant travelling across the UK.
He was wonderful, did more tests, scan and examinations and thoroughly checked my health record, and my family's medical history. He also told me, that officially - formally - for a diagnosis of PBC (according to formal Uk/Eu/US diagnostic criteria) 2 out of 3 diagnostic criteria have to be met:
1 - the presence of AMAs * ........................ and/or:
2 - abnormal lfts over a period of 6 months without other causes ................. and/or:
3 - a liver biopsy that shows damage, consistent with PBC, to the microscopic biliary tubules in the liver (not the bile duct).
[ NB He also told me that about 10% of the population (blood donor statistics) have AMAs, which is far, far higher than the % that ever develop PBC.]
1 and 2 are usually the main route to diagnosis with PBC, although some people with abnormal lfts may have PBC even if AMAs are absent. They are the group normally offered a biopsy, although if lfts are strongly consistent with PBC, and symptoms are present, a biopsy may not happen. In your case, with AMAs and symptoms, they may monitor you for a while, and offer urso. It may depend on your general health and family history, and also how bad symptoms are. They may offer a biopsy. However, they should be testing you for all other types of autoimmune conditions: sjorgens, lupus, Hashimotos, as well as also checking for all other liver conditions that could be causing your symptoms. They may also check your vitamin and mineral levels, and for joint issues, as PBC can effect Vitamin D absorption, which can lower your calcium absorption.
Sorry this is so long, and a bit ott, but I wish someone had told me all this back in 2008. I would make sure you are seeing an actual liver specialist (not just a Gastroenterologist) and preferably one who is familiar with PBC. You can ask to see any consultant in the Uk, so if you want to see a PBC Consultant, that is your right under the NHS - at least for as long as it continues to exist (!!!).
If you have not already talked to the PBC Foundation (they host this site on Health Unlocked) I would do so - link at the top of the page. Their advisors are lovely to talk to, and if you join (it's free) you get lots of advice, booklets, etc. and there may be a support group near to you - but hen you may not need it all, as you may not have PBC.
Good luck, take care.
NB Ultrasounds of the liver and all associated areas in the abdomen are mainly used to rule out other conditions that can be causing symptoms. Ultrasounds can also show large scale scarring in the liver, but not the scarring on a microscopic level as seen when a biopsy section is examined. Ultrasounds can help indicate or confirm PBC in the presence of other diagnostic criteria, but an ultrasound alone is not formally enough to diagnose PBC.
*(Nb There are sub-types of AMA that code for different autoimmune conditions. M2 AMA is the one linked to PBC, however, it does not matter if the level of AMA is high or not.
Great info!
Thank you so much for all this. It's really helped. I've seen a Rheumatologist, but they said they'd need to speak to a liver specialist before proceeding. I'm still hoping that nothing ever come of this and that, like you, I just have the anti-bodies. I shall wait and see, and keep my fingers crossed. Thank you again, lovely, for taking all the time and trouble to help me with this xx
Hi Grittyreads
I've just read your reply to cath1917, and found it extremely helpful, I've have bloods taken for other auto immune conditions having been diagnosed with PBC. How do they tell if you could have other autoimmune diseases? Is it different LFT's? Would there any other symptoms I am maybe having giving me a clue that there are other autoimmune diseases present? I have to wait a month between appointments and that's a little frustrating.
Thanks
Hi Liza, glad it was helpful. I don't know that much about many of the separate tests, but I do know that some of the different sub-types of the AMAs, are linked to some other conditions (I think, lupus, and sjorgens are two of these). Also, they have different symptoms - although fatigue seems to be common to most.
[Sorry, my memory isn't what it used to be, and I recently moved all my 'desktop' links to sites about tess, etc.. I'm trying to stop being quite so 'hyperventilated' about bad advice on PBC/AMAs, ever since I've been told I have not got it - but as you can see I still respond when AMA-only folk are worried. ]
You need to look up 'sub-types of AMA'. It may also be that different of the lfts are more affected with different liver conditions. My PBC consultant said he always monitors GGT and ALP in particular for PBC, but before he said that, the lab my GPs use didn't do GGT, so now it is checked.
Also, a lot of the other autoimmune conditions have their own antibodies, such as the antibody for Rheumatoid arthritis. A good lab, or good Liver consultant will know which ones tend to occur together, and will specify the tests to be done. My GP was brilliant (despite the GGT oversight) and tested for everything - even Lyme's disease, as back in 2008, I'd recently had a tick bite while walking on Skye!!
High AMA plus biopsy confirmation and staging = Pbc as I understand it in my 17 years since diagnoses.
I was diagnosed wit PBC this year due to high AMA -(but i,ve had this for 18 years), high IGm, and in the past year elevated LFT's. They weren't interested until the LFT's went up. I,ve had a fibroscan and i have significant fibrosis, so i have been told that its at an early stage. I actually have MAS 2 (Multiple autoimmune syndrome 2) as i have scleroderma/hypothyroidism/Sjogrens syndrome, and my blood tests show lots of other autoimmune antibodies. I also have significant osteoarthritis. Its a bit of a bummer, and at the moment i am trying to accept that i have 4 autoimmune problems, which is extremely rare.
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