I was told yesterday that I have tested positive for AMA but as my LFTs are OK that I don't have PBC? Is this correct?

[flowerpower66]

I have Migraines nearly everyday and pain in my neck/background

[ReiversMrs]

Hi Michelle I tested positive for AMA in Dec and in Feb My LFT was still Normal but after a ultra sound scan and a discussion of my symptons with a liver specialist I was told I do have PBC? Its very confusing

[Tessa]

Hi There, I was diagnosed in 2008. Symptoms plus positive AMA but normal bloods other than AMA. I also had an ultrasound which was normal. A normal ultrasound is diagnostic of PBC because it rules out other causes of symptoms. For example a blockage in the biliary tract. Where do you live? You could ask to see someone else

[GrittyReads in reply to Tessa]

Hi, sorry, but I really do not understand what you are saying. 'A normal ultrasound is diagnostic of PBC' ?? Please explain. Plus, PBC involves having problems with the bile ducts. Did you mean to say 'A normal ultrasound is not diagnostic of PBC' ?? If not and you are talking about something much more specific, then I think you need to explain in much more detail. I think someone reading this who does not know much about PBC would be confused and possibly frightened. Admittedly an clear ultrasound is not necessarily good enough to rule out the possibility of PBC, but it in no way confirms its presence. I agree that flowerpower66 possibly needs more tests, but I find your summary confusing.

[Tessa in reply to GrittyReads]

Hi there, many apologies for causing any upset or confusion. I'm struggling quite a bit at the moment with PBC associated cognitive dysfunction. But yes, ultrasound is used to excluded other possible causes for abnormal bloods, symptoms, abdominal discomfort such as a blockage in the biliary tract. To be on the safe side here are some links:

britishlivertrust.org.uk/li...

patient.co.uk/health/Primar...

netdoctor.co.uk/diseases/fa...

Hope that clarifies what I was trying to say. All the best

[GrittyReads in reply to Tessa]

Hi Tessa,

Thanks for that. I agree absolutely that an ultrasound of the liver can also rule out other conditions: ones that could be causing some of the problems that the patient is experiencing. However, it isn't accurate to say that a normal ultrasound is diagnostic of PBC.

By the way, have you seen that today there was another message from someone who was asking for help with regard to cognitive dysfunction associated with PBC? Take a look, maybe you could give them some advice. I did not know what to suggest other than they should contact PBC F, or the Liver Trust.

Take care.

[GrittyReads]

Hi Flowerpower 66,

(Sorry it's so long. I feel passionate about this as I believe I'm wrongly diagnosed - my diagnosis of: 'pre-symptomatic for PBC' does not strictly exist. I only have AMAs and I've never had any symptoms of PBC, but the diagnosis plays hell with insurance companies - to travel I have to admit to the PBC and then pay a premium, even though I pass all their questions - I am about to try and have my diagnosis overturned)

This is an amended copy of a post from several days ago, in response to a similar inquiry. If you look back on the site, you will see that you are not the only one confused about this situation. Not only are GPs and consultants divided on quite where they draw the 'diagnosis' line, but people on the site are also coming at this situation from different sides, some (usually with symptoms but good lfts) prefer to know the exact stage .

Some, like myself, who test +ve for AMAs, but have perfectly normal liver function tests, and do not have any (or many) symptoms of PBC do not want to be diagnosed (labelled) as having PBC, because we do not feel that there is anything wrong with us [yet ??]. Some people who have milder symptoms that are indicative of PBC, such as aching (and this could still have other causes) again do not want to be diagnosed until lfts become abnormal, or we have debilitating symptoms such as fatigue or crazed itching.

My understanding is that ...

About 95% of people who are found to have PBC by other means - such as via abnormal liver function tests, or a biopsy that shows damage to the bile duct - will also be found to already have +ve AMAs.

However, this does not mean that 95% of people who have +ve AMAs will get PBC*.

Having +ve AMAs does not mean that you will get PBC.

Some people just carry the antibody.

Yet some online (and other) descriptions of PBC make this assumption* - which is wrong.

The presence of AMAs is a strong indicator for PBC, but other tests should be done to confirm that PBC is the diagnosis, rather than assuming that AMAs = PBC.

A far higher % of the population test +ve for AMAs than the % that will ever develop PBC.

Testing +ve for AMAs is only one of the three criteria that should be checked for the diagnosis of PBC.

Generally 2 out of 3 of the criteria should be present for a diagnosis of PBC (and preferably all 3 for a cast-iron diagnosis).

That is:

1) abnormal liver function tests, and/or:

2) testing +ve for AMAs, and/or

3) a liver biopsy that confirms PBC by showing clear damage to the bile ducts*

[*biopsies are rarely done in the UK]

This is not just me saying this, it's what it says in the PBC Foundation handbook, it is what was quoted to me by a leading PBC consultant, and presumably it is what is set down officially in diagnosis guidelines.

My understanding is that these diagnosis guidelines are supposed to be strict (can anyone advise on this?), as presumably they may be used to govern whether someone gets welfare, or treatment. [I guess the equivalent in the States would be that your health insurance would not cover you if the strict terms of the diagnosis had not been followed, and you've been told you've got something, when strictly you have not got it.]

You don't say if it is your GP or a consultant saying that you don't have PBC. If you have tested +ve for AMA then your GP should have sent you to see a consultant, even if the GP has done the lfts that are clear (you should ask for a printout of your results, whoever did them). There are other tests that can, and should, be done, such as a detailed ultrasound - this cannot always rule out PBC, but scarring of the bile ducts can sometimes be seen, and the rate of blood flow and pressure checks can also be done which can also indicate if there is a possibility of blockage. You can also have a fibroscan, and there is another scan MRCP (?) that shows more than ultrasound but is not as invasive as a biopsy. I get the impression that these last two tests are not done unless a patient with +ve AMAs, but normal lfts, is also suffering from some of the more debilitating symptoms of PBC, such as fatigue or serious itchiness.

I'm not aware that the symptoms you describe are high on the list for PBC. However, your GP should be doing something to find out what is causing them, even if all concerned are certain that you don't have PBC.

Also, if you have AMAs, your GP should be testing for other conditions - as well as PBC - as there are various subtypes of the antibody that are indicative of other conditions, such as lupus. You should be tested for a range of other autoimmune conditions. My GP tested me for lupus, rheumatoid arthritis, and did a full range of thyroid tests as hypothyroidism is common in people at risk of PBC, and there is an autoimmune form - Hashimoto's. I'm not saying this to worry you, I had all these tests, 6 years ago, and was clear and fit, and I still am. Plus, I first tested +ve for AMAs over 22 years ago, and I've never had an abnormal lft and I have no symptoms.

Also, could you be menopausal? that could explain the migraines, or it could be because you are stressed - so go back and ask more questions and get more answers.

Finally contact the PBC Foundation, talk to their advisors, and get a copy of their info folder.

Try not to get stressed, come back to me on here or via email link if you want to ask more questions.

Take care.

[Hidden]

Hello flowerpower66.

I was diagnosed with PBC later 2010. I started itching earlier that year and aat the time was feeling fatigued. My LFTs were found to be abnormal. I had a scan, that apparently showed everything to be pretty normal and the consultant said he could see the bile ducts, none were blocked. (Sometimes you apparently cannot see these clearly.) I had the AMA the day I had my first consultant appointment at the hospital, that came back positive and the consultant in his letter wront the words 'high titre'.

Now I am not sure about whether or not you have PBC or not. Difficult to say and I wouldn't like to mislead.

You see with PBC in the early state we all tend to be asymptomatic, that is void of any symptons. Some of us then develop symptons, others don't. Although majority are picked up with PBC at the symptomatic stage, a lot are picked up on by having the LFTs checked. Not sure how you came to have the AMA check done unless it was an antibodies blood check as routine as I know I've had different ones, had a negative ANA same time as the AMA on.

Can I perhaps suggest that perhaps you seek further advice with regards to the AMA test that you stated was positive and mention that PBC patients tend to have positive results and then find out what is said from there.

[flowerpower66]

I also have problems with my cognitive and I have been telling drs for around 3 years but they just tell me its stress. I know it isnt . I have been doing my job for 15 years and struggle to remember the simplist of tasks. I have also noticed a hand full of times where I have had mad itching fits but thought nothing of it. My main concern is my poor cognitive state. Feels like I'm empty headed or sometimes drunk. I don't drink or take drugs. I recently had head ct scan which was OK. Thank you all for trying to help me. I must admit that I was pretty shocked to hear this news from the specialist. My. Doctor did tests as there was something raised on my blood test and apparently was raised back in may last year. It was an inflammation marker? Think I mentioned that I have under active thyroid and b12 problems as well.x

[GrittyReads in reply to flowerpower66]

Have you ever had an ultrasound or other scans for the PBC? I think this should be done where you test +ve for AMAs but LFTs are okay. I definitely think you have a right to more explanation and possible follow up with regard to the raised blood test, especially if it was inflammation. Ask for a copy of your results, and discuss with the PBC Foundation advisors, or post on here.

Also, are you sure your thyroid treatment is up to the mark? There is a 'thyroid site' elsewhere, here on 'Health Unlocked', and the people on there are incredibly helpful and full of info on symptoms, correct doses etc. The list of symptoms for hypothyroidism, is - as you probably know - huge, so it's possible that some of your symptoms could be linked to that, although I'm not ruling out PBC. More more people on here are commenting about cognitive dysfunction - which is a symptom of PBC.

Do try to do everything you can to distress - I know it's not easy - but it does seem to make things worse for us. Take care and post back if you have more queries, or when you have more news.

If you are feeling okay with your AMA situation/condition, and have no symptoms - as I and many others generally do (even though I object to my diagnosis), then it's okay. But if you are feeling unwell then you deserve more follow up and answers.

Take care.

[flowerpower66 in reply to GrittyReads]

Thanks GrittyReads, the Specialist did say that he is going to arrange an ultrasound. I am going to ask for a print out of my blood tests from my Doctor. You take care also.x

[GrittyReads in reply to flowerpower66]

Hi, That sounds good, the ultrasound could help a lot.

By the way - it was supposed to say 'de-stress' in my last message, sorry about that! Let us know how you get on. x

[Hidden]

I am I the same. Oat as you flower power. First Dr. said yes positive. Second said no. Waiting it out. No meds for me right now. Have whole bottle or URSO in my medicine cabinet but really don't want to start as of yet. Second opinion said no.