Do I even have PBC?

Hi, this is my first post and it's not so much a question but a rant. I had my gall bladder taken out 2 years ago after repeated gall stone attacks. Afterwards I had terrible stomach problems and after repeated consultations was told I had Bile Salt Malabsorbtion and also I had the antibodies that indicated I had PBC. I'd never heard of this before so did my research whilst waiting to see the specialist. Some of my symptoms fitted the diagnosis, fatigue, joint pains and dry eyes mainly. The specialist then said it was probably a false positive so they would retest in 12 months time as my liver function tests were normal. That test still showed the AMA antibodies and my liver test was still fine. The specialist concluded that I 'most likely' have the early stages of PBC and they would recheck my liver function in 12 months again.That's it. No information, no advice on diet, no advice on exercising when somedays you are so fatigued that you can't stay awake for more than an hour at a time, nothing. Just, 'yeah, you probably have this terrible disease - see you later'. I read posts by others talking about meds, and liver biopsies etc and they've not done anything like with me, should they have?

I guess what I'm feeling is just this awful sense of limbo and not knowing what to do to try and stay as healthy as possible (apart from the obvious).

Sorry for this long rant, but I didn't know who else I could talk to after the lack of response of the doctors.

Sian

[Wendom]

Hi there Sian I too am exactly the same as you I was diagnosed with chronic fatigue syndrome about six years ago I always insisted to the doctors they where wrong anyway in march 2011 after feeling very unwell I asked my doctors for some blood tests as I had symtoms of sjogrens I was asked if i heard of Pbc I said yes as I had read that it went with sjogrens I asked to be sent to liver specialist but they refused and said that my liver tests where normal so I did some research and also spoke to Robert from the Pbc. Foundation who told me I did almost. Certainly have Pbc so I went back and insisted on seeing a liver doc . On the day of consultation liver doc was sick so saw specialist consultant liver nurse who said I have early Pbc positive AMA also positive igm and that I was symptomatic. For Pbc also that my liver would most likely fail in about 15 years and she was discharging me into the care of my doctors until my liver functions change I was gobsmacked

To say the least. I have since found out that I had the positive AMA test done in 2006 and 2008 both positive but doctors just never told me so it's been 6 years of normal LFT for me just waiting for things to change I don't think it will be long as for just over a year I have had upper right pain under my ribs I have since left that doctors I could not trust them after they ignored my AMA tests results for at least five years I now have LFT done every six months I too feel like I'm in limbo wasn't given any info from the docs about illness either sorry this is so long if you want to ask me any thing feel free to message me keep well Wendy x

[Val02]

While your treatment is callous to say the least, there is very little they can do for PBC other than give you URSO when your liver starts struggling and your LFTs are all over the place. Having said that you do need to have this explained, and whilst there may be little point you going to gastro very often with normal liver results, you DO NEED to build up a good relationship with your GP, who is likely to be seeing you regularily with symptoms. At my surgery I ask for a GP who would take a special interest in PBC, I got a volunteer and she has been a tower of support, and over the last 4 years become quite knowledgeable, to her credit.

For day to day advice and support you have the PBC Foundation and us!

[kosy2]

Sian,

First want to welcome to the site. Sorry that you have PBC and want you to know you have found a place of understanding of what you are going through.

If you read the prior post you will find that many of us have had some of the same experience with the doctors. Sad but true.

The bottom line is like Val02 said, not a lot they can do. There is no cure, only possible treatment for symptoms.

There was a time when I really trusted doctors and thought they had all the answers. Not any more. After 31 years and 5 kids and the past 2 years dealing with PBC my view of doctors have changed. Especially when it come to rare diseases. For me, self-education helps put my mind at ease. This site and other like it are a great comfort. Nothing like getting information straight from the horse's mouth.

Again, I encourage you to take the time to read all the prior post - massive amount of great information and understand.

Best to you and looking forward to you input in the future.

Michele

[KarenRL]

Sian,

First of all, sorry that you aren't feeling well and that you have been diagnosed with PBC.

You asked if you even had PBC.....I would say that if you have the positive anti-bodies, then "yes". In many cases, that is how PBC is diagnosed.

I understand how you would be wondering why they aren't even treating it....especially when they mentioned liver failure in 15 years. Honestly, there is no way they can predict when or if you will have liver failure. Many people live with PBC for decades and decades and ultimately, pass away of something else at a rip old age....never even needing a transplant. Others progress more quickly, even in spite of treatment. No one knows why. So, for your doctor to say something like that was highly irresponsible and misleading, in my opinion.

Regardless, as far as why they are not treating you or conducting a biopsy....I can tell you what my doctor told me at my initial visit. He wanted me to have a biopsy because my liver enzymes were high and had been for over a year and my blood work did NOT show positive antibodies. So, the liver biopsy was necessary for diagnosis. In your case, you have the positive antibodies, so the liver biopsy is not necessary for diagnosis. And since your LFTs are normal, there is nothing to indicate that your liver is currently sustaining damage and/or inflammation.

Before my biopsy, my doctor told me that he thought I may have an autoimmune disease and told me then that, sometimes they choose to treat it and sometimes they choose to monitor the patient. It would just depend upon what stage I was in. The medications have side effects, so I think they like to monitor your condition for a while, if you are in the early stages and only treat it when you seem to be progressing to a level that the benefits of the medication will outweigh the risks and side effects. So, I think the approach your doctor is taking is pretty typical for those who do not have active inflammation and are in the very early stages of PBC.

I agree with Michele above though, knowledge is power. I've spent a lot of time educating myself on PBC and it has helped me accept my diagnosis and try to move forward (not that I still don't have bad days)

[Hidden]

Hi, Thank you for the comments and support and the warm welcome. It's reassuring to know that I'm not alone in the lack of information from the relevant medical people. I will certainly read back on previous posts, I've been following them for a little while before plucking up the courage to post anything (wuss huh?)

I do struggle with the fatigue a lot at the moment, Some days I can manage to take the dog for a hour walk, and then have to sleep for several hours, (the dog does force me to get out though which is good) and those are the good days! I had some blood tests last week, for just about everything but mostly arthritis (I'm 39), LFT's, thyroid etc... so we will see what they show up.

KarenRL - thank you for the information about why I haven't had a biopsy to confirm diagnosis, that makes sense.

Thank you for listening to me vent

Sian

[mulberry]

Hi Sian, I never discuss PBC with my GP as I had a liver scan done a few weeks ago and when I asked about the results I was told "you have schirrosis" and nothing else. I did not stop crying that evening. I had a liver biobsy in 1995 which stated the opposite. The GPs do not know enough about the illness. One GP told me in 1997 that I would die in 15 years.

I hope this info helps.

mulberry x

[littlemo]

Hi Sian just echoing what other members said in welcoming you to the site you are amongst friends who completely understand what you are going through. Like yourself I was told (after about a yr of running to medical consultants in my local hospital) by a top hepatologist in N.Ireland (where I'm from) that my blood was positive for AMA's which is a diagnostic tool for pbc and therefore didn't need a biopsy and to this day 10yrs on still have not had one nor want one as the results they give can be misleading and alarming. Your dr will order one if and when you need one. Try not to worry the 15yr thing is the worst case scenario and it is only the minority of people with pbc that require transplant. You could live to a ripe old age and end up dying of something completely unrelated to pbc. The PBC Foundtion are fantastic at giving info and support and I have referred to them often over the years, fantastic group of people. And now you have found this site where we all try to help each other. I only discovered it a few weeks ago but already feel like I have found great friends who truly understand how you feel on a daily basis. Best advice I can give, as think I might be a veteran of pbc from what have read so far on this site! is eat a well balanced healthy diet get your 5 a day fruit and veg to help your immune system, exercise as much as possible drink plenty of water to flush out the toxns and stay positive and live in hope that soon it will be discovered what causes pbc so better treatments can be found to prevent it, treat it or even cure it. Bye bye for now Sian. Take care. Lisa (P.S. I am 41, was diagnosed at age of 31 and have two lovely children 16yr old girl and 5yr old boy feel free to message me any time )