Feeling confused

[Lisamarie33]

I have recently had a positive blood result for the mitochondrial antibody. I am very confused as to whether i have pbc or not. I am currently undergoing investigations. I have so far had 2 ultrasounds and 1 mri. My liver enzymes are elevated and rising each time. My consultant says I may have it or possibly not. How was everyone else diagnosed? How accurate are the blood tests? Thanks

[4pjx__]

Good question. I have a similar issue. Ittested positive for the AMA's also. I have had a CT scan, an ultrasound and an endoscopy. Tuesday I'm scheduled for a liver biopsy. I don't have many symptoms but they think it's PBC.I wonder if you can have the antibodies but not the disease. These things I think about several days after my visit with the doctor. Haha! I guess I'll have my answer in a week or 2 .

-Pam

[Lisamarie33 in reply to 4pjx__]

I have heard you can have it but it's lying in waiting kind of thing. My consultant said judging by my symptoms if I do have it it will be in very early stages. I haven't had a ct scan just an mri and ultrasounds. I am wondering if a liver biopsy will be next. Although they aren't keen on doing them in my hospital. So frustrating the not knowing.

[iagra]

For me it was a combination of elevated LFT, abnormal AMA, ultrasound (showed no obstruction) and liver biopsy (showed mild inflammation around the bile ducts). Combination of all these, pointed to PBC.

[Lisamarie33 in reply to iagra]

I have had 2 ultrasounds which are both normal. I had an mri of my billary tree but not sure on results of that one til Wed. I am getting fed up now I just want to know one way or another. I am under so much stress at the moment with all the worry. My consultant says the blood test could be a red herring. Although reading online the test is supposed to be 95 percent accurate. I have very few symptoms. I have the raised LFT's, right sided tummy pain, lethargy. My consultant has been trying to point the problem towards my gall bladder. Not sure what his next move will be. Lisa

[cazer]

the antibodies are normally present if you have pbc but normally its a biopsy of the liver that confirms the diagnosis.

you can have pbc but no symptoms as the liver may not have been damaged.

best wishes cazer. xx

[GrittyReads]

For a good discussion of this I would talk to the trained advisors at the 'PBC Foundation'. They host this site on 'Health Unlocked' and there is a link to their website at the top of the page, with info on email and phone contacts.

However:

For a formal, medically official diagnosis of PBC, under UK/US/Eu medical guidelines, then 2 out of 3 tests have to be positive for PBC. There have to be:

1) The presence of AMAs (M2) [ = 'antimitochondrial antibodies'] * ... and / or :

2) Abnormal blood tests for the liver enzymes [ = liver function tests or LFTs] ... and / or :

3) A biopsy of the liver that shows tissue abnormalities that are typical of PBC.

Usually if 1 and 2 are present, then that is enough for a diagnosis of PBC.

If PBC is suspected, because the common symptoms are present [that is: fatigue, itching, muscle and joint pains, digestive pains, brain fog etc) but only 1 or 2 of the tests is positive, then a biopsy may be given, as this is the most definitive test. This is particularly the case if the lfts are abnormal, but AMAs are absent, as a small % of people can have PBC without AMAs being present.

However, if AMAs are present but liver function tests are perfectly normal, then a diagnosis of PBC would not be given without further investigation, usually a biopsy if symptoms of PBC are present.

Also, if the patient has no signs or symptoms of PBC, seems healthy, and has nothing in their own, or family, medical history to indicate a likelihood of PBC or other autoimmune conditions, then PBC should not normally be diagnosed; although the patient should have repeat LFTs every year as PBC may develop.

NB According to blood donor statistics, about 10% of the population have AMAs, but only about 1.5 - 2% of them go on to develop PBC. Some people just have AMAs, just as some people just have the RA factor, but never develop rheumatoid arthritis.

I have been known to have AMAs since 1992 when I was 36, but my annual LFTs have always been perfect, and I still have no symptoms of PBC and am not diagnosed as having it.

However, exhaustive tests are needed to make sure there are no other liver conditions (eg if the LFTs are unusual but not typical of PBC), and also that there are no other autoimmune conditions, as many of them have 'symptoms' that are similar to PBC, and some are indicated by the other AMA-subtypes.

* NB Usually the AMA-M2 subtype ... as there are several subtypes of AMA, the other types code for different condtions, eg Lupus

Apologies that this is long and jargon-ish. I've found that it is necessary to be on top of 'Medic-speak' if we are to understand out condition and avoid being dignosed with something we may not have.

[Lisamarie33 in reply to GrittyReads]

Thank you. I have had abnormal LFT's since January picked up in a full blood count for something else. Mine have been rising each month especially my gamma levels. I have tested moderately positive for AMA but not the other ones. I have family history my mum has lupus and my uncle on my dad's side. They tell me I definitely don't have lupus as I tested negative for that particular antibody. So far my tests seem to be indicating my liver isn't damaged. I may be one of those who may have the antibody but may or may not develop symptoms. I guess I will find out what is next for me. I know in my area they are not keen on doing liver biopsies. I will take a look at PBC foundation website. Thank you for your reply.

[JaneIng in reply to GrittyReads]

Hi GrittyReads,

do you have thyroid issues? Do you still have your gallbladder? Are you taking Urso? Is your bile duct size normal?

Sorry for so many questions. Just want to know if your profile is similar to mine. If so, I will feel more at ease.

Thanks,

Jane

[Lisamarie33 in reply to JaneIng]

Hi I have not yet been formally diagnosed but have tested positive for AMA. I have abnormal Lft's to. No Thyroid problems have been picked up. I have just had an Mrcp of my billary ducts etc. I am seeing consultant for results on Wed so will know more then. I have polyps on my gall bladder and right sided pain under my ribs.

[JaneIng in reply to Lisamarie33]

Thanks, Lisa. Hope your MRCP turns out good.

--Jane

[Lisamarie33 in reply to JaneIng]

Thanks I will let you know Wednesday. Fingers crossed for good news.

[GrittyReads in reply to JaneIng]

Hi JaneIng,

I've still got my gall bladder and the bile duct is normal (at an abdominal scan last Summer, all was fine and healthy looking, including the whole liver).

I don't take Urso. In Summer 2015 and 2016 I saw one of the UK's leading PBC specialists, with my GPs' consent and approval. This was because, a few years earlier, a local 'new-to-me' consultant had reacted to my AMAs, by saying I didn't have PBC ... but then he gave me a diagnosis of 'pre-symptomatic PBC', which played havoc with insurance. Last year I asked the PBC specialist if I should take Urso, as a 'precaution' and he said that there was no point to taking Urso if I didn't have PBC, especially given the side effects that some have.

I just have AMAs: my LFTs are perfectly normal - have been since the AMAs were first noticed in 1994. Plus, I have no other signs or symptoms of PBC, with an okay health record (only endometriosis) and no family history of autoimmune conditions.

For a few years my TSH was a little high, but no other thyroid issues and that is now normal.

Hope this helps,

Gritty xx

[JaneIng in reply to GrittyReads]

Thanks Gritty. This really helps.

--Jane

[GrittyReads]

You are welcome. I hope you get some answers soon. If it is PBC, then is good if they have caught things early.

NB The consultant I saw most recently [... some years ago another consultant - here, where I now live ... I'd moved from where I was originally told about the AMAs in 1992 - had tried to say I 'did' have PBC, so I saw one of the 'top' PBC chaps, who categorically said I didn't have it] ... well, he sets greatest store by the GGT (gamma) and ALP levels.

There have been great steps forward in the treatment for PBC, Urso has made things so much better for most sufferers, and there are two new drugs out, partly for those who don't respond to Urso, although recent research suggests that when used with Urso, the results are even better!

Also, the level of AMAs is not supposed to matter. A lot of people get upset if theirs is high, but it doesn't make any difference.

Above all, try to keep happy, live life to the full, do things you love and don't stress - absolutely the worst thing for all autoimmune conditions. So exercise - dance, ski, run, trampoline, play, Zumba, walk ... anything you love - and eat well (might as well help the liver and whole body by cutting alcohol) and enjoy yourself. "don't let the 'B' get you down!"

Take care, and always ask on here for more advice and help. It's a very supportive and giving community.

[Lisamarie33 in reply to GrittyReads]

I definitely intend to live life to the full. I am only 34 and have 2 young children. I will still go about my normal exercise regimes and am off on holiday I. A few weeks. Hopefully if I have it in very early stages I have many years to live. Lovely to speak with people who understand. Most look at you and say never heard of pbc so feel quite alone at the moment. Whatever my final diagnosis I am grateful for finding this group to help me.

[swinstan in reply to Lisamarie33]

Hi Lisamarie33

I was found positive for AMAs in 2003 but all other tests and scans were normal and I was told categorically that I did NOT have PBC at that stage. I was monitored annually and in 2016 test results changed and I was then diagnosed with PBC.

[Lisamarie33 in reply to swinstan]

Hi did you have raised Lft's at all back in 2003 when you tested positive for AMA? Did they do a biopsy at any stage? I am wondering whether I may be in the same position as you and I have it lying in wait.

[swinstan in reply to Lisamarie33]

Hi. No raised LFTs until the last couple of years really. And they don't tend to do biopsy in the UK. Not seen to add anything beyond other tests and scans. Even now apart from intermittent tiredness I don't feel too unwell. No itch thankfully.

[Lisamarie33 in reply to swinstan]

My Lft's have been rising since Feb each month. Only certain parts especially my gamma levels. My only other symptoms are pain under my rib on right side, tiredness. No itching thankfully. My hospital in my area are not keen on biopsies. I wonder what my consultants next move will be for me. I generally feel tired all the time but have learnt to live with it. I still manage to go about my normal daily family life.

[swinstan in reply to Lisamarie33]

I believe there are specific patterns of results which indicate PBC. Raised ALP in particular but not raised ALT or AST. If they are all raised it indicates other possible problems that may need checking out. For me, they also noted raised GGT but this is very sensitive to alcohol so I was asked to minimise intake for a while to get an accurate measure for PBC. It remained high. What I was led to believe was that raised ALP and raised GGT whilst other measures normal would be indicative of PBC.

[Hidden]

All MRI, Ct scans with and without contrast, ultrasound. Showed nothing wrong with my liver.

I had a biopsy that I do not trust.

That showed very early stage 1 Pbc with early fibrosis

[Hidden]

Hi Lisamarie

I was diagnosed officially in Feb this year . I

I first went to my gp in October last year with a totally different problem .

My gp requested blood test to confirm that I hadn't got ovarian cancer . My blood results showed there was a problem , possible infection but wasn't sure and had to have a repeat blood test in a week . They also come back abnormal and said I have anti mitochondrial which when translated meant that my immune system was very low and my body was fighting with my organs . I then had to wait for a scan , the scan wasn't until December where I had to wait for results , we had the Christmas period as well which delayed things , scan suggested that I needed further investigations which comprised of a fibro scan etc , it was this Feb I saw my consultant and said that I have PBC and put me on ursodeoxycholic acid , I was to start off with 1 x 250 mg for 4 weeks then progress to 2 x 250 mg then in another 4 weeks increase again and then again until I am on 1000mg a day . I have since had a ct scan which comprised of an intravenous injection which is supposed to show up the liver and any other organ like my gall bladder , pancreas kidneys just to see what is what , I have a diallated bile duct which is causing a problem . The only thing I'm not coping with is the itching ,

My consultant says that my PBC is a result of medications I have been on for such a long time that has caused it .. I don't touch alcohol and lead quite a healthy lifestyle , so to say I'm still getting my head around this is an understatement,

But I wish you well and hope you are relatively symptom free 😀