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