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PBC Foundation
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PBC

Hi last week I was diagnosed with PBC I initially went to doctors 10 years ago with upper right pain 5 scans later they continued to tell me it was a fatty liver just change diet which I did I also lost faith in doctors then the beginning of this year I had a fall at work and had to choose a doctor this was 9 years later so I regained my faith and told her I just didn't feel well so she did blood test and my enzyme where up had a scan they found a gall stone and a stone in my bile duct last week I had these remove and discovered I had cirrhosis of the liver and I was not a drinker or smoker ct scan found no cancer or tumours but a week later my bloods came back and it showed PBC I live in the country area and not close to specialist he said I have had this a long time and they where shocked with what they found I have terrible itching for at least 5 years which I thought it was because I was going through menopause I'm also have jaundice they are sending me a script for medication not sure what it is then back to specialist in January I must admit I'm a little scared because of the lack of support an I'm not sure yet how much damage has been done not sure if what I can eat and what I can't and I'm trying to get my head around all this information

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Welcome to this group Ellymay1. Sorry you have to be here and are having a tough time.

A good source of imformation is the PBC Foundation. It is uk based but is open to anyone regardless of which country you live in. It is free to join. Www.pbcfoundation.org.uk

There is a downloadable compendium which is very useful to refer back to.

For the vast majority of people PBC is a slowly progressing disease. Most people die with it not of it. So take heart.

Please feel free to ask questions. There are people in this group who have had PBC for decades and live relatively normal lives and will share what they know. Please bear in mind we are not doctors, just fellow sufferers.

Best wishes Lindy

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Ps. PBC has nothing to do with alcohol

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Thanks lindy I knew it had nothing to do with alcohol but it's having to educate friends family are aware cos they know I don't drink are there stages of pcb

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Hello Ellymay1.

If you go onto the Liver North (based in Newcastle, UK) website you can fill out your details and they'll post you a copy of a dvd about PBC free of charge. You can find newsletters on there also.

Also on the British Liver Trust website there is a leaflet all about fatty liver and diet.

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What even to australia

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Not sure but if you check their website and click the link it would state what country one is in. It's been about 6yrs now since I received a copy but as stated I am in the UK and I find it difficult at times replying to some posters if they are not in the UK like myself as though we all have PBC and tend to receive urso (or now the new Ocaliva that's new) how we seek medical appointments and have access to doctors and medical records can vary.

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I'm in Australia Ellymay1 and I received a copy of the British Liver Trust CD - all they ask for is a small donation (I'm presuming to cover the cost of postage). Must say though I received my copy years ago so things may have changed, money wise.

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So sorry that you are going through this & that your symptoms were initially dismissed as fatty liver. My ex primary doctor also thought that my fluctuating LFT's were either due to fatty liver or statins. He didn't send me to a GI. While he was on medical leave, I chose another primary doctor who was a gastroenterologist & an internist.

He monitored me for a while & couldn't figure it out. He said since I didn't drink & liver scan didn't indicate fatty liver, he wanted a biopsy.

He sent me to a Hepatologist for a 2nd opinion because I was not convinced about the biopsy. Hepatologist did more tests & also recommended a biopsy.

The radiologist report from the hospital showed inconclusive results. My Hepatologist then had the slides sent to a more renowned radiologist specializing in the liver & pbc was diagnosed.

As I have written in other threads, there is not a special diet for pbc. Just eat healthy & avoid alcohol, smoking, sugar, salt, junk food, processed food etc.

Is the specialist you are seeing a Hepatologist? It will be worth seeing one even if you have to travel to a more urban setting. Gastroenterologists specialize in different areas of the GI system & given your diagnosis, you should see a Hepatologist.

For now try to remain calm & write down the timeline of all your symptoms & medical history so you can give the full history to the specialist.

Write down all your questions, the most important ones first to bring to your appointment. You might be a bit nervous, so maybe have someone go with you to take notes.

Also make sure your doctor sends whatever test results/medical records are needed to the specialist before your appointment. I remember my doctor doing this & also speaking to the Hepatologist about my case before my appointment.

Hope this helps.

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Thanks I will do that

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I see most on this site really push seeing a hepatologist. I have second thought about my GI & thought I might look for new Dr& still might. My husbands cousin is an ER Dr here with the hospital group my GI is with. I had an opportunity to visit with him today at a funeral. I asked his thoughts about my GI. He said he is a good Dr & is in a good group (liver center), & if he needed a GI he would not hesitate to see him. My GI is also an internist. Talking with him st least restored a little faith.

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Hepatologists are specialty Gastroenterologists who focus on liver disorders. Even among hepatologists, you can get further specialization to very specific conditions. My Hepatologist told me that.

My gastroenterologist was more focused on other GI issues & not liver conditions. That's why he recommended the Hepatologist to me. I still see my GI as my primary doctor.

I think the most important thing is to find a doctor who is knowledgeable enough to treat pbc & who you have a rapport with.

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Yes, I understand what a hepatologist is. I’m just saying that some GI drs are well trained with liver conditions. The one I see, did his internship under a liver specialist. If not for knowing that, I wouldn’t have seen him the first time. I’m going to see how things move along with him & make my decision from there. Since I’m early stage fibrosis, I’m not going to make a quick change. Right now he is doing all any dr could do. I’m on the only other med there is besides Urso & he is monitoring my labs. I also see my Internist end of December & I plan to discuss further with him.

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That's good. Since he works in the liver unit, am sure he is up to speed on new developments & can consult with his colleagues. A doctor is only as good as how attentive he is to your medical needs.

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You’re right. There is alady hepatologist in his group so hopefully if he sees the need he will turn me over to her.

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Perfect! Sounds like he is very attentive to you.

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Well, we’ll see how attentive he is. Right now I’m seeing his nurse practitioner & I’m very comfortable with her.

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As long as you feel that you are being taken care of & trust her...that's good.

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I’ll trust my gut instinct for a bit😊

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One of my other doctors had referred to to another GI. I saw him twice & while he was a competent doctor, I didn't like him. So I searched for another GI that I liked.

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Bedside manner means a lot to me.

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I am a diva, so I expect a lot from my medical professionals. Bedside manner is a must & they need to be down to earth. No one with a superiority complex.

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Totally with you on that. 💖

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Its awful that your doctor did not refer you to see a hepatologist sooner

10 years is a long time and you have had symptoms of pbc

You should insist on getting a referral to a hepatologist as soon as possible

Good luck

Hope all goes well for you

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When you live 5 hours drive away everything get complicated at least this new specialist is doing everything he can to help me isolation is lonely for all that live where I live but hopefully january

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Where do you live i live in ireland and i found a great support group which has helped me a lot

Its good to have support when you are diagnosed with pbc

Glad you have an appointment with specialist in january

Good luck

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Austalia

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Fingers crossed you are on the right track! I have not been diagnosed with PBC but I have had long term upper right side pain (and scans) and latterly the itching! Many thanks for sharing your story - it makes Me Think I have to follow my gut and push to find out what is causing my itching . I don't want to have PBC but if I have I'd rather know soonest X

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Yes sooner than later wish I was told early and not after surgery

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You need to see a hepatologist asap to check this out esp the itching

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Definitely sooner rather than later i am awaiting diagnosis have met hepatologist tests inconclusive i would rather know for definite and start on treatment if i have pbc i have no symptoms glad you are going in righr direction if you didnt fall at work you wouldnt have met the new doctor everything happens for a reason keep us informed hope all goes well

Take care aine

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Yep I agree it led me to my diagnosis

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Absolutely and you are getting the treatment you need

Hope all goes well

Which part of australia do you live in

Have never been to australia

Believe it is beautiful

It is so far from ireland 24 hours on a plane

Have been to america a few times but not australia

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I live in south Australia was born in the uk left when I was 4 it's a great place if the get chance you should visit lots to do and beautiful weather the country areas have really true Aussie my husband is from the land is a bushy

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Hopefully when i retire in 2 years time i have family cousins in hamilton new zealand and i want to visit them also its hard when you are working cos i would need at least 4 to 6 weeks

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Yeah I hear you I want to go back to the uk in a couple of years now that I have 13 weeks long service leave started saving now as I have family there

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That would be nice

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Hi Ellymay1...

I’m glad you were diagnosed and you have faith in your doctor...I firmly believe that is half the battle! It sounds like you have a good one too, mine is awesome and I’d drive 10 hrs to see her if necesssry...

If it helps, my symptoms were chalked up to peri-menopause both by me and my doctor(s) for the last 15-20 years. I do very well not dwelling on not being diagnosed (was stage 3, almost 4 I was told) earlier. I just know what I have to do now going forward, I just don’t have the energy to deal with both...

My primary doctor was convinced I was a drinker at the time my lft’s elevated to the 1400’s. That was my first hurdle...🙄. So I feel your frustration with that stigma...

Something that someone on one of my Facebook groups said she tells people this:

“I have an autoimmune disease of the bile ducts in my liver. It’s a genetic progressive disease that we’re trying to control with medication, diet and lifestyle.

Liver damage is liver damage regardless of the cause and mine is pretty severe. I have good days and bad days just like anyone else with a chronic disease.”

It really helps with the stigma! Read and learn all you can. Join Facebook groups to talk to others and read about how they deal with this disease.

I have found, for me, that cutting wayyyyy back on ANY MEAT helps me feel better. Makes sense if you read how protein is processed by the liver. So I have a vegetarian diet for the most part...I sneak in a bite or two from my boyfriends plate!

Stay on the Urso as that is KEY as well.

Good Luck and READ READ READ!!!

Ask questions and remember we don’t ALL have the same experiences with this disease so read, learn and don’t freak out thinking all the bad stuff that is happening to others is going to happen to you! You will manage this...just educate yourself.

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Elly May1

Hang in there. Your story is not unsimiliar to mine. Initially when I finally got the PBC diagnosis, I was both relieved and terrified. The relief came from finally having a name to the problems that I had been having for years. (The doctors did not know what was causing my symptoms and that was very unsettling.) Once PBC was confirmed, I then went into panic mode.

I’m now settling down. I am much more confident in the doctors and I’m happy with care and follow up I’m getting. I think my emotional state helped to cope with my symptoms . I also use mediation to help me focus on all the positives in my life.

. Another thing that helped me,in looking at the glass half full, was that PBC is a SLOW progressive disease. My Hepatologist thinks I’ve had it for 20 years. He makes this observation by looking at tests which included pathology from 2000. And I’m still in fairly early stages. :-).

In brief, I’m doing okay now. Once you have time to think about it and educate yourself. I hope you too will feel much better. I would suggest that you Go to the websites that have been mentioned. Mayo clinic in the USA also has some great information.

And use this website to get the support we all need. having a chronic illness is always so scary . If you have close friends share your feelings with them sometimes just expressing your fears seems to help. At least for me it does .

Hope I’ve been of some help?

Jeanette

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