Scared & Confused: I am new to PBC, I have... - PBC Foundation

PBC Foundation

8,454 members β€’ 7,155 posts

Scared & Confused

β€’13 Replies

I am new to PBC, I have just recently been diagnosed so I do not know all the ins and outs yet. I did not know that PBC can cause forgetfulness. Is this accurate? Because that would explain a lot! I was diagnosed by my Gastro Dr. about a year ago. Who I think is AMAZING by the way, he sent me to a Hepatologist. The Hepatologist did his own set of tests (twice) because he did not believe that they were accurate. He said I was too young for PBC? (I am 35) He then performed a liver biopsy, but the tissue that he removed was said to be healthy. Except he told me that I have fatty liver. He told me he did not know why my AMA was positive, and my levels were so high, nor why I was experiencing all these symptoms (severe fatigue, really severe joint pain, forgetfulness, the itching 😫 etc.) He took me off the Urso, which I was unaware of until I went to refill my Rx. Then he told me he was going to just keep rechecking my levels every few months. I was confused so I went back to my Gastro Dr., he was just really confused too. He put me right back on the Urso. He said that a healthy biopsy does not mean you do not have PBC. That my AMA being positive, my elevated liver enzymes, plus all my symptoms clearly point to PBC. He could have just biopsied a healthy part of the liver since PBC attacks all different areas of the liver? So I guess my question all of this correct? I have also heard that low Vit. D, and low Vit. B levels can cause more fatigue. Should they have tested my Vit. Levels as well? Also if this is all accurate how am I supposed to know what stage I am in?

Another weird thing is my best friends mom, that I grew up around. I found out that she had cirrhosis of the liver about 5/6 years ago. It's all I was ever told about the subject really. She was diagnosed about 8 years ago, and she passed away about 4 years ago from what I thought to be liver cirrhosis. Apparently she had PBC as well. This is very scary to me!!! I remember when I was a teenager being at her house. She would constantly be itching, sleeping, and complaining of her leg pains. Now I am the one itching, tired, and with the constant pain! I thought this was a very manageable disease? I have small children, and the thought of me not being here forever with them is the scariest thing in the world to me!!!! I try not to think about it because it just makes me very sad, and cry.

13 Replies

Hello Cstar1079.

I was diagnosed with PBC Dec 2010 when I was by that time 46. (I started itching early 2010 which led to PBC diagnosis.) My only symptons I knew about in 2010 were itching and at the time fatigue. Some on this site do say that they are forgetful but I can't say if down to PBC though possible. Over 5 years on from diagnosis I hve the itch which has altered, it is now mainly confined to later night, fatigue vanished some point during 2011.

I wasn't diagnosed via biopsy, I had abnormal liver function test (LFTs) and it was found I had antibodies (known as AMAs) that along with the 2 symptons at the time gave diagnosis. I am in the UK and if you can be diagnosed by how I was there is no reason to have a biopsy. I know if I was requested to have a biopsy now I'd not agree due to the fact currently it cannot alter any treatment for the PBC (there is just the urso and any other symptons we can develop can be then dealt with). A biopsy takes only a very tiny sample and may not be an accurate picture of the liver as being a large organ, one part can be damaged, another not. It is said to be able to stage PBC but I don't go in for these so-called stages. I just go along with how I am.

Urso is apparently taken for life once you are PBC diagnosed. I have read of some discrepancies on this site with diagnosed PBC patients who have normal LFTs and no symptons (known as asymptomatic) who aren't given urso at the time. Usually though if you have abnormal (or elevated) LFTs then you are given urso. Even if the LFTs return to normal at a later date we still have to take the urso.

Normally though a biopsy cannot give an accurate picture of the whole liver it is said to be able to diagnose PBC due to cell changes that are throughout the liver in PBC. I think the damage to our liver comes from the affected bile ducts. We have many bile ducts throughout the liver hence the variable condition I think.

I think it is usual for a doctor to check certain vitamin levels once diagnosed with PBC. My hospital doctor did back then (he said my Vitamin D was 'a bit low, but not bad'. Looking at the figure I then got, it was only the line. I've never had supplements as yet). Some are undertaken judging by certain variations in the full blood count, I think Vitamin B is one of them.

I think we all go through the ups and down in the early days of diagnosis and wonder what might lie ahead. To me the best we can do is to try to keep as healthy as possible, make those lifestyle changes if need be. Try to steer clear of any unnecessary medications too.

I came to a decision long since now that I had PBC (I used to be under the illusion that if the itching ceased I didn't have PBC) and that nothing will change it. I haven't got normal LFTs but they're said to not be dramatically high either and they seem to be quite constant at each blood check since dropping considerably following starting urso.

I try to get on with every day, enjoy life as best as I can and any symptons I may develop I'll deal with them then and not dwell on them meanwhile. I think if I did wonder I'd not enjoy life now. These things may never happen so would be useless worrying. Once you clock up a year and then another you start to think differently about PBC.

Cstar1079 in reply to Hidden

Thank you! My itching is definitely a night time thing as well. It drives me mad. πŸ˜–

Leighton56 in reply to Hidden

I couldn't have put it better. M fatigue is bad at the moment but I do what I need to do when I have the energy. Forgetfulness is a problem for me and frustrating.

Hi cstar, as others reply on here they will all say, don't panic X they will also say speak to the pbc foundation, they are brilliant, friendly and very helpful.

They can answer all your questions, just if you phone them have any results handy.

I am new to this since last year and still waiting on some results to be clear.

There are people on here that have had pbc for 20 years or more so your in good company.

I'm frustrated with my GP and specialist as they don't seem to relay info to eachother and seem to think it's ok to leave you hanging around for months without results. I have the itch, the positive AMA, tiredness, real aches In the body, and the foggy memory.

But luckily it sounds as tho you have good Drs and specialists around.

Try not to worry as it uses up energy and it's pointless if there's nothing you can change xx

Rest when you can, enjoy your children, get on with the life you can live, it might be in small doses but when you have the energy use it wisely lol and when your tired rest.

Remember speak to the foundation.

All the best.

Cstar1079 in reply to Twinkle26

Thank you so much! 😊


Hello Cstar1079,

I shall message you directly.

Best wishes

PBC Foundation

Hi Cstar1079, my heart goes out to you. Peridot and Twinkle have said it all, please follow their advice. I would add that I've been taken off the Urso as well - ?NHS money saving exercise - the progress of my PBC is slow as it is with most people, although the fatigue has a very negative effect on my life - I used to bounce with energy! The Foundation will offer you support and lots of information. It is scary, I can understand that as I've been very alone in my struggle. All I can say is, learn all you can about the condition as it affects you and then use your GP and Practise Nurse to help you understand anything that doesn't make sense, e.g. jargon - that's what they get paid for! The more you communicate your concerns, the more likely it is you will get answers. Lots of Love. xxx

Cstar1079 in reply to gardner646

Thank you so much! Xoxo

Cstar1079 in reply to gardner646

The fatigue is still a problem, and it makes me such an unhappy person. I'm always so moody, and temperamental because of my extreme exhaustion, and pain. I used to be so bubbly, fun, and the life of the party. Now I'm just miserable, and tired. It's affecting my home life, and I feel like I'm squandering my time with my kids, and husband because of my bad mood ALL the time. Even if I take a nap during the day, whether it's 30 minutes, or 3 hours. The pain in my joints just makes it all worse too. Around 5 p.m. Every night I can barely move. Which then makes me even more tired, mentally and physically. I just want my old self back, because I don't even recognize this version of me at all.

Hi, I was diagnosed at 35, although I had symptoms for 5 years before that, so I don't think they can say you are too young.

Your gastro is correct, when they do a biopsy they are taking a tiny sample of a very large organ. This is the main downside to biopsy. However the fact that it was clear means you can be reassured that its unlikely to be at an advanced stage.

It is the case that more people are caught early with this condition now, and I was told by a research hepatologist that if its caught before the bile duct it damaged it can be prevented from the domino effect of damage to surrounding cells which continues throughout the liver.

So I think you are best off continuing on urso. See if your bloods improve. There will be other tests developed to look at your liver, like a new multi scan being trialled currently, which may provide better info in the future. There is also an Enhanced Liver Function test (ELF), which has been designed to assess the liver for fibrosis/ cirrhosis, instead of biopsy. Maybe you could ask for that to put your mind at ease. Not all Hosp can do the test, but you can send blood to a centre that do.

Try not to worry. Get on with things as best you can, get meds for itch if that becomes a problem, and I'm sure you will find you feel much better. Many people on this site have no problems with pbc and have had it many years. In most cases even if it does advance it happens very slowly so don't panic

Trust information from pbc foundation.and British liver trust, don't pay to much attention to other stuff on internet, it is often outdated.

Wishing you well

Take care


Cstar1079 in reply to Wass71

Thank you! Yes I love my Gastro doctor, but my Hepatologist...not so much. It seeme to me like he was just brushing me off.

hi Cstar

I've been on urso 16 years now, had symptoms for 4 years before that. In early years could only work part time, symptoms now not half as bad as they was, back working full time, learnt to pace myself. Now 51. One saying always helped "more likely to die with PBC than because if it." I also found some foods set off the tiredness and itching.

Cstar1079 in reply to sharon7716

Thank you so much! That is refreshing. I just always feel SO tired, and in so much pain, that I wonder what's going on. It scares me when the pain gets so bad that I can barely walk, and I am trying to stay away from pain meds because of the PBC. It's hard, and it is so frustrating too. I used to be so vibrant, and fun. Always smiling, and happy. Now I feel like an old woman, and jut going grocery shopping with the kids is a MAJOR TASK! Nobody else seems to really get it, when I say I'm tired. They respond with "me too" or " I know, I have kids your age too". I feel like I'm 80 at times. Although the Urso helps with my belly pain, and swollen feeling in my belly also. It has NOT touched the pain, and fatigue. Does that fade after time, or just get worse? Because I honestly don't know what I will do if it gets worse. My husband gets frustrated now because it's been 5 years of me complaining of my pain, and exhaustion. Even though I've only been recently diagnosed. Even with the pain I try to work through it with the kids, house, and errands etc. Most days I'm running for 15-17 hours...which would be fine if I did not have this disease. I've always been a hard worker, and I HATE that I feel like an old woman when I'm only 35! Thanks for lettin me vent. 😊

You may also like...