Waiting for more tests...

[ratkins]

I have all the symptoms except for jaundice. I have not been diagnosed with PBC. My doctor did some blood work today and sent it off to a lab in Califorina. I had my gallbladder removed 11 years ago. At that time when trying to diagnose my gallbladder issue, they also found fatty infiltrations on my liver. The said that would go away once my gallbladder was removed. As the days and years went by, I kept feeling more and more tired. I am exhaused. So I recently went to my primary care physician and he ran some blood work. My liver enzymes were elevated by 3 times the normal range.

Then he did an ultrasound of my liver and notated that the fatty infiltrations were still there from 11 years ago, but now, they are worse. I have to wait 2 weeks for the new bloodwork to come back. I do not have hepatitis, that was confirmed with the first set of bloodwork. I am not sure what else I can do but wait... Please help me.

[mumofthree]

Sorry to hear you are having such a rough time at the moment. Try not to worry too much....easy to say I know but try and conserve your energy. If you are tired don't fight it give in and rest.

I was diagnosed with PBC in Jan 2011 and was told I had signs of fat in my liver.I like you suffer with fatigue but thought this was just to do with having PBC and had not thought too much about the fat in my liver issue.

I have been struggling with weight gain and had tried all sorts of diets but doesn't matter what I tried it didn't work...I eventually put it down to a side effect of the drug URSO that I take for PBC. However I read recently that fatigue, problems with sleeping, generally feeling unwell, weight gain or inability to loose weight are just a few symptoms of a fatty liver. Also that fatty liver can be reveresed by a change in eating habits. I thought I had quite a healthy diet and couldn't understand why I was either putting weight on or just could not loose it. For the last 2 weeks I have been on a very low carbohydrate diet and have been eating lots of fresh fruit and veg....cooked and uncooked...made fruit and vegetable smoothies...lots of really tasty soups....lean red meat, chicken and turkey....seeds, nuts, legumes, beans, lentils...soya milk.....lots of citrus fruits etc etc and without any effort...except the time taken making the juices....I have lost 4 pounds in weight. So its just a thought to take your mind off the wait for your blood results, have a look at your diet...its just a thought!

Good luck

[boneytoys]

I was diagnosed with PBC 6 years ago . Like you I have eleveated liver enzymes but one thing I will never forget was the specialist's ego ...she phoned me at home and said I think you have PBC and she sounded jubilent that she had nailed it ... as she was talking I was googling it and reading about it with horror. But then she said but of course it needs to be confirmed by a liver biopsy. so why tell me on the phone Anyway so my question is Was PBC suggested to you and if so as mother of three says take it easy...relax until it is confirmed you have enough to think about . Urso puts on weight generally I agree.I was told that. Small price to pay in my view as it seems to work!!!

[mumofthree in reply to boneytoys]

Hi boneytoys,

A gastro registrar told me I had PBC as a result of blood tests done to check for rheumatoid arthritis. It was a complete shock for me when he told me that because I went for the appointment believing there had been a mistake..thinking I don't have anything wrong with my stomach...but my rheumatologist had referred me to gastro without telling me. I had never heard of the condition....I asked what it was and what did the future hold...he said that I had an autoimmune condition that affects my liver and I could have 3 years to live....I was totally devastated...He said that the blood tests showed I had PBC but that I needed scans and a liver biopsy to confirm extent of damage. All I could think about was that I would not see my youngest grow up, he was 10 at the time. I went through nearly 3 months of hell... waiting for the scans and biopsy before returning for the results...But this time I was seen by the consultant who put my mind at ease and said that even though I had PBC it did not mean that I would end up with cirrhosis ..he would give me URSO which would help to slow down the progression... if I did end up with cirrhosis there was the possibility of transplant.... it was not a life sentence and I had a life to live!! As far as I am concerned URSO has worked for me by returning my readings to almost normal and ok I have put on weight but as you say that is a small price to pay.

[Hidden in reply to boneytoys]

Have to comment here as I think with myself using URSO I have neither gained or lost any weight in the almost 2yrs since I started it (diagnosed Dec 2010). I think reading between the lines, it isn't known but some PBC patients do put on weight with URSO and others don't.

Hello ratkins, well meanwhile it does seem you are playing the waiting game, I had that myself for 2mths after having the antibodies test Oct 2010. I'd never mentioned PBC to my GP at all after finding out about it as prior to snooping about with regards to abnormal LFTs and knowing I'd not got this (Hepatitis nor Wilson's Disease (copper)), he never mentioned to me. It was only when I saw a gastro Oct 2010 that he said he was going to undertake a special blood test and I said was it for PBC to which he then said had I heard of it.

All I could do whilst waiting as to me it seemed to have taken so long to get to the final blood test (13wks before I saw a gastro and then 2mths further for the AMA results) but in that time I attempted to take even better care of myself than I always thought I had as I did find it did make a bit of difference. (My LFTS actually dropped slightly of their own accord between Aug and Oct 2010 and that was with no URSO, they'd never done that in the 5mths I had been having blood checks, they had risen and risen.)

Noticed you are in the USA and I know here if you have the positive for AMAs and symptons along with abnormal LFTs then there is no urgent need to have a biopsy unless there is a query. I've never had a biopsy and I'd deem it not necessary myself given it's been positively stated I have PBC (I still suffer the itch nightly but other than that I'm pretty much great).

Thinking back now I know we all think it is urgent with regards to this but the blood work can show it to be much different and I still reckon without the URSO from Dec 2010 I'd still have been pretty much well and I am sceptical about the tablets as I somehow think I'd still be in the same stage/state currently without them but that's my way of thinking.

Good luck and keep us all posted.

[SC49]

There is little you can do but wait unfortunately. As I have discovered, the gift of patience is something that you will need to nurture. But there is no point in panicking while you wait. My own view on panic is that there is no point worrying about something that may or may not happen. If it is going to be PBC then you already have it and panicking won't cure it. It is a very slow moving condition so a couple of weeks will make virtually no difference to you health wise. If you don't have PBC, you will have spent a couple of weeks worrying needlessly. I kept telling myself 'nothing has changed - whatever I have today, I had yesterday and the day before'.

I had all the symptoms except jaundice too. Apart from the tiredness and problems with concentration and memory, all the other symptoms have mostly been manageable. I was diagnosed in September 2012 after having endless blood tests and an ultrasound. It took 9 months to get the diagnosis and to be honest, it was almost a relief to be told that it was 'something' and that i wasn't just losing my marbles

I have been on Ursofalk for about 8 weeks and so far I have had no side effects that I can think of. My blood levels had made quite a dramatic improvement after only four weeks so I am assuming that means that the progress of the disease will be slowed even more from here on.

The down side is that the Ursofalk has made little difference to my symptoms - i still have great difficulty staying awake and I still have very big problems with concentration and memory.

On the positive side, however, I have noticed that I have been able to eat virtually anything without suffering any kind of stomach pain. That is wonderful - I had about 5 years of pain after eating. if I put on any weight, it will be down to my new eating habits i think

I hope that all goes well for you and that you get some answers to your worries sooner rather than later

[crundalite]

The diagnosis-or in your case possibility-of PBC must come as a shock for all of us. It is not however automatically a death sentence! I had my diagnosis almost 20 years ago. I have had numerous minor and irritating problems as a result but tend to lead my life as if PBC does not exist. Urso may have helped in this as I used to have a lot of abdominal pain. That no longer occurs.Things may be changing for me with the introduction of auto immune heapatitis but untill they do-live on. A recent article in 'Bear Facts'-the magazine of the PBC Foundation- by Prof Neuberger could offer some reassurance. He says that most people die WITH PBC- not BECAUSE of it! Good Luck.

[ratkins in reply to crundalite]

Crundalite,

Thank you for your words of encouragement. Yes, it is a shock to me and before this week, I had never heard of PBC. It does ease my worries to know that I am not alone. I feel comfort to know that there is a forum as this to which I can gain knowledge and support.

Thank you!