Negative m2/5 weeks later 1300:1, 7 years AMA positive

[Hastingsgal]

Hi guys, it's been a very long and frustrating year and a half with so many symptoms. I was waiting a very long time to see a hepatologist on Nhs so I finally paid privately at the London bridge hospital. Sods law I got my appointment literally a few days after I paid out privately. I was told by LBH that they were confident I did not have PBC as I was M2 negative. 6 weeks later I had my appointment finally at The Royal Free . My scans were normal and lfts normal, I was told "it does appear that you have PBC as you are M2 positive At a titre of 1300 & have all the typical symptoms. I was told i had 1:6 chance of developing full-blown PBC in the next five years. Firstly, how is it possible to have a negative M2 AT one hospital and then have a high titre at another less than two months later ? I have tested positive for AMA for about seven years getting progressively higher with no fall. Should I question the first test that was done at the private hospital? going online and reading about PBC and likelihood of getting PBC simply from a positive titre I've read that 80% of people who are positive will get PBC eventually. Is this the case? If so why was I told one; six. Maybe that was referring to the timeframe "over The next five years". I have severe pruritis which no cause has been found, but biopsy confirmed inflammation, evidence of scratching and hardening of the skin,, very bad fatigue which has actually been chronic and severe in the past, esophagus problems such as I have hiata hernia, spasm, some early stage lesions in Moisture producing glands in throat, in which I suffer from being able to swallow foods, vitamins & pills. I have had abnormal LFT,s iin the past which Was flagged up by my GP but that was seven years ago. I have changed my lifestyle quite a lot in terms of what I eat but I've been told that has nothing to do with LFT's getting better. The pruritis & dry eye have been debilitating. I have punctual plugs now in eyes which have helped. The chronic fatigue was debilitating last year. I probably should just not worry about any of this and get on with my life, but I am very confused by the two different findings from two different hospitals one being private, one being NHS. I feel that the Royal Free was probably more accurate and honest. And I have to wonder if the M2 test that I paid for the private hospital was ever even done and they just gave me a negative. I paid a lot for that Along with a whole other bunch of blood test that they asked me to get. My scans were not remarkable had a Fibroscan and ultrasound I think.. If anyone can shed any light on this, I would really appreciate it. It would be good to know if anyone has had any experiences at the London bridge hospital or with Royal Free and what you think of their competence etc. Thank you

[Ballymahon2]

I dont know anything about LBH but i believe the royal free is a very good hosp and i would certainly accept their diagnosis i am ama positive m2 negative but my hepatologist here in ireland has put me on urso based on my blood results ultrasound and fibroscan were you not prescribed urso at any stage pbc is very treatable nowadays with urso and ocaliva

It would be good if you got a diagnosis

You have normal lfts so you may not be prescribed urso

My lfts were elevated and this is the reason my hepatologist suggests pbc

I think you should stay with the royal free

Good luck

[jane1964]

Hello I had positive AMA and symptoms of extreme fatigue and itching hands and feet with normal liver function tests for a few years eventually my alkaline phosphatase level rose, after around 5 years.So this can be how it goes.If you joined the pbc foundation, you could talk to them it's free to join and they are really helpful.

[Hastingsgal in reply to jane1964]

Thank you. I can't afford any private anyway so stating with royal free. I know they have a good rep & I "felt" more confident with the specialist. But was wondering about the 2 different blood tests & likelihood of getting full pbc. I appreciate any replies! 😞

[jane1964 in reply to Hastingsgal]

I really hope you don't ever develope abnormal liver function tests, it is a hard diagnosis to get but it's much better to know and be monitored than not know and the new treatments are improving how people do.I was diagnosed over ten years ago my son was at primary school I was very frightened but I have seen him graduate and although it's been very hard, (I also have other rheumatological problems) life is still pretty good.Jane.

[Mirimaur in reply to Hastingsgal]

I am with the Royal Free , they are very good

[gwillistexas]

I am in the USA but tests are tests no matter where you are. I noticed you mentioned skin hardening and problems swallowing. The high ANA can indicate possibility of schleroderma , which can cause hardening if the skin & problems with the esophagus. Google ANA test results & click on Rheumatology. Org. It will explain everything about ANA & possible reasons for high ANA.

[Hastingsgal in reply to gwillistexas]

Hiya, I guess you are from Texas. I was raised there but moved across the pond. My ANA has always been normal except once I think many years ago. They are investigating me for Sjogren's in Rheumatology. But I had a lip biopsy & it was negative. Nearly a year has passed & they are going to do another one. All my bloods are normal except I have malabsorption, causing anaemia. Ive been tested for coeliac which was negative because these symptoms are similar. I'm soooooooo BORED with it all but it is what it is....which is what by the way? I guess I am accepting I might very well develop full PBC but in hope I do not

[gwillistexas in reply to Hastingsgal]

Yes I’m in Texas. 😊 I was only diagnosed with PBC early July and am still learning a lot, but have absorbed loads of info. I know it’s all difficult to accept. But you hang in there & pls keep us posted as to your findings. Have a nice day🦋

[KevinHall10_]

So sorry, questions ...i know i had this since 2011 because i was ama pos. At the time didnt know what that meant, apparently my dr. At the time didnt either. Just gave me depression pills. Who knows why some drs do not take the time to check things out. I went to a specialist and pulled my slides from 2015 liver biopsy and she told me i wad in stage 2. Freaked me out, because my dr. Her told me i was in stage 1. Why some drs see something different than others is beyond me. Just keep plugging away, sometimesi feel we have to be a liitle pushy. Now my daughter just had high liver test. Follow up to come. She is 30. Take care

[Hastingsgal in reply to KevinHall10_]

Thank you for your reply. 😊 sorry to hear about stage 2 & your daughters high lft's. My daughter is similar age. It's all still very confusing to me. Take care.

[mel16]

I am under the royal free and I think you couldn't be under a better place to be honest. They have the right equipment and seem to know everything you need to know. Good luck

[Hastingsgal in reply to mel16]

Thank you very much for your reassuring reply. That was my gut instinct. It's just so confusing with private hospital saying one thing & royal free saying another. My understanding is that Royal Free is doing research into pbc. I may have misunderstood but they asked Me If would consent to being part of the bio bank for research purpose. Would love to know if anyone has had any dealings with London bridge hospital. They were quite disorganized in many ways but I was desperate to get tests done

[GrittyReads]

Please contact the advisors at the 'PBC Foundation' and discuss this with them: there is a link to their website at top of page, where there are email and phone no. contacts to their lovely trained advisors.

Their website is also great, PLUS, it has on it (you may have to join first - but it's free, and merely a check-in) a summary of the recently decided - formal and official - guide to consultants for the diagnosis of PBC. This was worked out by all the leading PBC / Liver specialists.

My understanding from this document - and my own experience* - is that you cannot be diagnosed with PBC, just from the presence of AMAs-M2, alone [no matter how high the level]. You need to have abnormal blood tests / liver function tests (lfts) - over a period of time - that are abnormal in a manner typical for PBC. If these blood / lfts tests are inconclusive, or negative ... but, you have AMAs-M2 'and' symptoms of PBC, then you should be given a liver biopsy. As you say you have symptoms, but your bloods are all clear, Royal Free should - I believe - offer you a biopsy

A blood test for AMAs-M2 is quite different - and separate to - the blood tests and liver function tests that count as the 2nd diagnostic criteria for PBC. AMAs-M2, on their own - are not enough for a diagnosis of PBC, without either abnormal bloods/lfts typical of PBC, or a liver biopsy that shows PBC.

You need to find out exactly what tests have been done, and what not, and what the results are. The AMAs alone - no matter how high - are not enough , on their own, for a diagnosis of PBC.

Please, please, do check this out with the 'PBC Foundation'.

Take care,

Gritty

*(I was recently given the 'all-clear' on PBC, by one of the UK's leading PBC consultants. He spent a year - and several separate tests and interviews/exams - to check me out. This was after a bogus 'half-diagnosis of PBC' from a local consultant, who had told me I didn't have PBC, but who then gave me an odd diagnosis that insurance, etc would not accept. It all made me ill with worry, not knowing where I was. All I had was AMA - M2, high levels. This had been known since 1992 - I've possibly had AMAs all my life ... some people just have AMAs - but it was first noticed by my old GP in 1992 after a routine blood test. I was checked high and low in 1992, but then told I was clear, but just had to have blood tests every year, to keep an eye on it. That was until my 'new-to-me' GP over-reacted, and the local consultant 'labelled' me after I was referred to him by the GP who had never come across AMAs /PBC before.)

Nb I think it may be typical that if AMAs-M2 are present, then some Labs send the results back to GPs saying it's indicative of PBC, and some GPs than take that to mean it is PBC. AMAs are an indicator, but that's all).

[Hastingsgal in reply to GrittyReads]

Thank you!!!