I was prescribed Urso which I still take - god knows why. At my annual medical my live function bloods show normal.
Yesterday I visited the consultant at the Royal Free Hospital in Hampstead and I said I do not think I have PBC and he called another doctor to come and do some scans. Apparently there are new machines that can test the scarring, density and flexibility of the liver. The doctor who performed the scans said that my liver is normal.
I think I must have been misdiagnosed in the first instance.
Has anyone else had the same experience?
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Goks
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Hi, yes I was diagnosed 2011, and started on Urso, I have never had any symptoms, my lfts are normal and my Liver is normal and shows no damage. I will speak to the consultant next month, as you have, but I assume there are lots of others like us.
Hello Goks,
As I understand it you can have PBC and be asymptomatic which is without any symptons visible (ie itching) and also have normal LFTs each time. You more than likely as PBCRobert stated carry the AMA antibody which gave the diagnosis or was you diagnosed by liver biopsy?
Though some of us who were diagnosed by being symptomatic like I was in Dec 2010 (I was itching and at the time fatigued) and had abnormal LFTs started on urso it can be possible for someone then to regain normal LFTs in the future but personally I think it would be less probable. I'm now on 4th year with urso and though my recent LFTs showed a fantastic improvement which has not happened since early 2013 they are still not normal though they aren't overly bad at present (that is the SLT, SLP, GGT. Bilirubin which is said to be a marker in PBC is normal and a good normal whereas for the first time 6 months ago it wsa 1 point below normal). I still itch but fatigue long since left me.
Once you have a positive diagnosis of PBC then PBC is what you carry for the rest of life unless some cure comes along in the interim period.
Personally I would not dwell on this if you are fairing well with the urso and as you have said normal LFTs. A scan cannot actually show PBC but it can show damage. I had a scan back in 2010 6 months prior to starting urso with PBC diagnosis. My liver showed up as normal at the time and the doctor pointed out when I saw him that all my bile ducts looked good at the time.
I wish you well and that you never progress with PBC. You might be one of the exceptionally lucky ones and yours has taken that halt but with this PBC there are no guarantees. Take it as a good sign as I know I definitely would. Be happy, live life to the full as I do more now than I ever did.
I was diagnosed 10 years ago and wondered what all the fuss was about as I had no symptoms. Within 6 years I was fighting for my life. Hopefully you have been misdiagnosed but probably not!
It depends on the exact criteria that were given for your diagnosis, although it sounds as if your recent checks have ruled it out - assuming that the consultants at the Royal Free also had all your relevant blood tests.
What exactly did they say, originally 10 years ago, and what did it say in the consultant's letter then ???
NB If you were not sent your own copy at the time, then ask for a copy from your GP (you may have to pay a small fee as it's not a recent result) - or just ask him/her.
If you were diagnosed with PBC purely on the basis of testing positive for anti-mitochondrial antibodies (+ve AMAs), then that alone is not formally sufficient for a diagnosis of PBC.
I differ slightly from what Robert says ... but, this is not just my opinion: - it is what I was told, informally, by one of the UK's leading PBC experts.
Whilst the presence of AMAs is a very strong and important indicator of PBC, it is not enough - alone - for a diagnosis.
The official diagnostic criteria state that for PBC to be diagnosed, then at least 2 out of 3 of the following diagnostic criteria need to be satisfied. That is:
1) The presence of +ve AMAs, and/or:
2) Abnormal liver function tests (lfts) over a period of time, and/or:
3) A liver biopsy that shows damage to the bile ducts.*
* biopsies appear to be done less often in the UK than in the US, as they are so invasive, so criteria 1) and 2) are usually accepted for a diagnosis of PBC, but nowadays instead of a biopsy you would usually be given one or more of: fibroscan, ultrasound, MRI, and ... another scan that I've forgotten the initials for (sorry).
If you want to read many of my earlier posts/responses on here, you will see that I frequently bang on about this issue. I won't repeat it all here, just that I was told I had AMAs over 22 years ago, but PBC wasn't mentioned, there was no actual diagnosis, and I just had lfts every year. Over 6 years ago, a concerned, new-to-me GP sent me to another consultant who diagnosed (labelled??) me 'pre-symptomatic PBC', yet my lfts are still perfect every year, and I have no symptoms. My biggest problem now is Travel Insurance, and I'm grateful I don't need Life Insurance etc - 22 years ago I don't think a TI would have touched me, so my feeling is that I would never have travelled the world if I had been diagnosed on AMAs alone.
I know that I may well develop PBC (and may be doing that right now!), but my attitude is that, as yet, I don't have it, and I really don't need inaccurate diagnoses messing up my life. I feel that this diagnosis has caused me more trouble and stress for the last 6 years, than actually having PBC - although I apologise to all the sufferers of PBC on here who possibly wish I would shut up.
AMAs are a strong indicator of PBC, but they alone are not sufficient for a diagnosis.
There is a study that shows that a far larger percentage of the population have +ve AMAs, than those who ever go on to develop PBC. A large majority of those with AMAs don't develop PBC*. If everyone in the population were tested, and all those with the antibody were diagnosed with PBC, there would be chaos (same for all the people with the rheumatoid antibody [etc. etc] who never go on to develop the condition).
So, overall Goks, it does depend on what criteria you have for the diagnosis.
*NB About 95% of the people who definitely do have PBC, do also have AMAs ...
but ... this is not the same as saying that 95% of people with AMAs will get PBC; ...
unfortunately, this is what some online articles on PBC say, and what a lot of people assume, and repeat.
Unfortunately, I'm not clever enough to have my own views on the medical side of PBC, I am merely a speaker for our Medical Advisory Board- which consists of some of the finest minds in world PBC. I did state above that AMA was a strong indicator. I didn't say AMA, alone, was enough for a diagnosis.
With regards to diagnosis, you missed out presenting symptoms which, of course, are important too as a helpful guide to diagnosis. I wonder if your criteria are more to do with research studies than with clinical diagnosis.
On a personal point, and this is my own personal view- I am a fan of "suspected PBC" when someone is unsure. That allows for medication (urso) if all parties concur; it allows for monitoring; it still allows people to get insurances; and it allows a clear pathway should changes need to be acted upon.
NOT to be confused with stages, there are 4 phases to PBC. The first phase is asymptomatic (usually with +AMA). This is widely acknowledged amongst heps in UK liver units. (I am on holiday just now so don't have key phrases in front of me re the 4 phases and it is important that I use the correct terminology)
In terms of your own journey, Gritty, a diagnosis is just that. For some, it can be a lifetime of worry. For some, an inconvenient coincidence of a blood test. For some, a hanger upon which to place years of symptoms and validation of what they have gone through. For a few, it can be inaccurate also.
In truth, it is what we decide it is. We have control. Will it rule our lives? Our decisions? Our outlook? Or is it useful information helping one to make informed decisions. We decide...
Sometimes, I wish people would give us a quick call as it is so much quicker than communicating on here. One of our key services is empowerment through greater self management (physically, mentally, emotionally) and we have much to offer anyone facing difficulty with their PBC. I genuinely believe much, much more can be achieved with a call.
I am one of those US folks that had a biopsy and I definitely have PBC. People with end stage cirrhosis can have normal liver enzymes. Its weird, but you wouldn't have a normal fibroscan. You may be one of the lucky ones that has it, but is staying in the early stages and not progressing . I would love to be in that stage, as by the time they got around to diagnosing me I was in stage 2.
I agree with the others, but if you find that URSO is not troublesome to you, I would continue to take it and count yourself lucky. If I were you, though, and wonder if you really don't have it, I would push for a biopsy. It really isn't a big deal and wasn't as invasive as many are led to believe.
I have preclinical PBC! Strong AMA & M2 plus something else.... Liver normal, blood normal, but fatigue quite bad. I chose not to take urso yet as there seems nothing wrong with my liver. It may not even progress, I'm praying it doesn't. I know of a lady who was misdiagnosed, after several years they called her in to tell her, must have been a relief! That's what she messages me on FB anyway...
Just ask your consultant on what symptoms he has diagnosed you on? Do you have a strong AMA for example or itch or suffer fatigue.... They don't explain anything unless you ask and ask again if your not sure x
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