Seeing liver specialist tomorrow

[annemariebradley]

Hi, I was told I have PBC by my gp about 5 weeks ago, I'm seeing a specialist tomorrow and I'm petrified, my lft are normal my bilirubin is 8, is that high? I don't itch the only symptom I get is swollen finger n toe joints, I suffer from acid, don't know if that's a symptom, I'm so worried, I no I've had this for at least 8 years as I found the results in my med notes and took my self to gp to be retested, I'm worried I may have cirrhosis and I'm scared for my children, sorry to sound so weak, I'm just scared about the damage I've done to myself through alcohol and food for all these years :(( xxx

[Cristina_Romania]

Talked to the PBC Foundation yet? Please do.

[mumofthree]

Hi annemariebradley

Please try not to panic... easier said than done I know....but its only natural that you feel anxious....you want answers!!! Make a list of any symptoms, worries or any questions you want answered and take it along with you to your appointment guaranteed you'll forget to mention something. Also take someone with you for support and to act as your ears.

I am sure each and everyone of us on here can say they have felt exactly the same as you when they found out they had PBC. I struggled at first to accept my diagnosis, I became very depressed, felt very alone and hid my head in the sand...I did not want to know... I eventually plucked up courage and contacted the PBC foundation, I found this site and have not looked back since...its been an absolute god send. I now know I am not alone and have a more positive outlook on life. Everyone is so friendly and helpful.

I would be fibbing if I said it has been easy because it hasn't you just have to give yourself time to adjust. I found the fatigue really tough and would fight against it until I eventually collapsed in work. My GP told me that my body was telling me enough was enough and shutting itself down. She told me I needed to listen to my body and if I felt tired I was to give in to it and rest. It was really hard to adjust but over time it does get easier..BUT you have to give yourself time.....If I feel tired I rest..sometimes I may sleep for 3 hours other times a cat nap is enough but I wake feeling refreshed and ready to take on the world. It does take me longer to do things but SO WHAT ....if it takes me 2/3 days to clean the house instead of a day.... if I have to take a few coffee stops when out shopping instead of shopping like a whirlwind. I have good days and bad days but tomorrows another day.

My symptoms are fatigue, painful joints, bones and muscles. My hands and feet and ocassionally elbows swell. I also suffered with bad indigestion but that has gone since I was prescribed omeprazole. I am still to find a painkiller to give me sufficient pain relief.

I think I may have had PBC for almost 12 years before I was diagnosed. with PBC in Jan 2011. I had suffered with painful joints, bones and muscles following the birth of my 3rd child. In Feb 1999, 10 weeks after his birth I began experiencing excrutiating pains in my hands, elbows, hips knees and feet. I could not pick him up, I had to use a scooping motion to get him into my arms. My GP thought I had viral arthritis and made a referral to a rheumatologist query rhematoid arthritis...that referral took 3 years to come through and was an absolute waste of time...he told me I did not have rheumatoid arthritis, could not give me any explanation for the pain I was experiencing and sent me on my way suggesting I could try and loose some weight ...I was 11 stone and 5ft 6in so hardly obese..I was about 9 1/2 when the symptoms started...I lost all faith in the medical profession after that and self medicated until Aug 2009 when out of pure desperation I went back to my GP, who referred me a 2nd time. I was seen within 2 months, had xrays, scans, MRI and numerous blood tests. I was due to go back for the results in Jan 2010 but the appointments kept on being cancelled. I kept on being told I was not an urgent case... I have not been forgotten....backlogs etc etc. In April/May I received a letter from the gastroenterology dept confirming they had received my referral and would send me an appointment in due course. I thought there had been a mistake.. as far as I was concerned I did not have anything wrong with my stomach....a phone call confirmed they had actually had the referral from the rheumatology department querying a result from one of the blood tests that had been carried out. My gastro appointment came at end of Oct beginning of Nov 2010...the registrar told me I had PBC. I was told I needed a CT scan, an MRI, more blood tests and a liver biopsy (not all consultants ask for liver biopsy). When I got home I read up onPBC on the web...big mistake ...it frightened me to death...I thought my days were numbered and I would not see my children grown up... I was absolutely devistated...the next few months went through in a daze. After all had been done I went back for the results at the end of Jan 2011 when it was confirmed I had PBC. I took my sister with me because I was in such a state..The consultant was brilliant he took the time to explain things to me (not that I was able to concentrate to take it all in because I was so afraid) he confirmed I had PBC... told me he would give me medication (URSO) which would help slow down its progression....advised that even though I had PBC it did not mean I would get cirrhosis it may never turn into cirrhosis...and assured me that I had a life to live.... 6 months later my levels had reduced and 12 months later they were almost back to normal - sorry not sure what the readings actually mean or what is high or not .

I was never a heavy drinker... 1 or 2 glasses of wine birthdays and christmas, my consultant told me a glass or two once in a while will not harm. Its not the alcohol that has caused the PBC its our immune system. You'll be suprised how many people you'll come across who will automatically assume you have a drink problem as soon as they hear the word cirrhosis. You need to be careful with over the counter medicines because they are broken down in the liver. A low saturated fat, low salt diet, some also say low protein..but consultant told me not to cut out all fat as our body needs the good fats.

I recently heard of a lady who was diagnosed at 52 is now in her 80s and still going strong. So we have many years ahead of us yet and you will be around for your beautiful children.

Sorry for the essay!!

Big hugs and best wishes for tomorrow... you'll be fine....Be positive.

Cheryl

[giggles12 in reply to mumofthree]

Like you I suffer with joint and muscle pain and been diagnosed with fibromyalgia have a look into the symptoms and see what you think and maybe you can bring this up with your gp on next visit hope this helps x

[mumofthree in reply to giggles12]

Hi giggles,

Thanks for this I'll definately check it out.

At one time I thought I 'just' had a bit of arthritis, now I seem to be making a list of ailments - PBC, osteoporosis, osteoarthritis - my mother did warn me....old age does not come alone...Oh joy, and I am only 52!!!

[Shellbear]

Hi, I was the same as you really frightened, I was 30 when I was diagnosed and have two small children so all sorts of thoughts went through my mind . Your billirubin is not.high, mine is 120 and

am jaundice, before it went that high my level was around 20 which drs were quite happy with, so don't worry. X

[Junolee]

Hi Shelbear, I think there are different scales for assessing bilirubin levels depending on the lab where your bloods are done. I have seen people talking In the single / double figures then I see people talking in the hundreds. Mine was worrying high last May ( I had jaundice) but now down to 61 which my GP tells me is about double the norm. They are happy with with in my context but if someone walked in tomorrow with that level they would be concerned. So it really depends on a lot of variables it's very hard to compare,

[donnathompson]

Hi i to was petrified when first told i had it apart from feeling very tired i had no other systoms at first,you do have to learn to listen to your body.I had to make a really hard desition at work and drop down a grade due to the pressure i put on myself as a deputy manager.I go and see the specalist every six week and seen to have a different systom each time i go,but you do take each day as it come and make the most off what you have.xx

[PBCRobert Partner]

Have sent a message.

[hopepbc]

Normal Bilrubin levels in adults... Total bilirubin: 0.3 mg/ dl to 1.0 mg/ dl (5.1 mmol/ l to 17.0 mmol/ l)

[annemariebradley]

Hi everyone, firstly I would like to thank you all for your your support, It's so nice to here from you all :)) x I went to see my liver specialist yesterday and he told that my bloods are normal ( lft ), and seeing that I've never had an abnormal lft since I first got an AMA positive result 8 years ago, that he's not going to do a liver biopsy or give me urso, he wants me to have my bloods done every 6 months and he wants me to have an ultra sound scan on my liver ( I had bloods taken yesterday as well ) he sort of rushed me in and out, as soon as I told him I looked on the net, didn't even get the chance to tell him it was the PBC foundation sight, he wasn't impressed, he told me not to worrie and that I could drink, and if and when my lft become abnormal he would discus treatment then, I've read that if u get given urso early on PBC it's better than leaving it, when I did try n question him he just said I will phone u when I receive uyour latest blood results and that I would die of something else not PBC, and I have no liver damage, I don't no if it's where he rushed me n I didn't get to ask him what I wanted to but I still feel a bit confused x

[Rowskisgran in reply to annemariebradley]

What hospital do you go to? Glasgow Royal Infirmary is superb. Dr Forrest has all the time in the world to listen and advise.

[mumofthree]

Hi annemariebradley

Good news in one way your lfts are normal, but frustrating you couldn't get your questions across on this ocassion. Try and throw some questions his way when he phones.... easier said than done I know when he seems such 'a very busy gentleman'! Unfortunately a prime example of 'just being a number in the NHS'!!.

Did he agree with your GP's diagnosis of PBC? From my understanding there is no cure for PBC but the progression of it can be slowed by taking URSO. If he has already, or does confirm PBC from your new blood test then I would definately push to be put on URSO. I would give the PBC foundation a ring asap...they'll be able to confirm or deny this and advise you accordingly...but do it before he rings...you'll have relevent info to throw back at him...forearmed forewarned so to speak.

The first rheumatologist did the rush in rush out thing with me.... a 15 minute consultation after a 3 year wait to be seen and he didn't even have the decency to give me the results in person of an xray taken on same day... he sent the nurse out to speak to me in a corridor surrounded by other patients......to say your xrays are fine you don't have rheumatoid arthritis....I didn't even get the opportunity to ask him 'but why am I in so much pain then'.

Good luck and best wishes, keep your chin up!!