Hi. Does anyone have liver scaring or/and fatigue or any other symptoms with normal LFTs?

[skywalker]

I'm struggling to accept or believe that I have PBC when my LFTs are normal all the time!

I've just come back off holiday and I've got a letter from the gastro department calling me back in, I need to make an appointment, can't imagine why, I think they have made a mistake with this appointment!

My liver is functioning well too, no scaring there!

I think it was a guess that he said I have PBC! I still don't understand what's going on!

Hope everyone is enjoying their holiday this Easter xx

[Hidden]

Hello skywalker.

I've not got a clue if I have any liver scarring. I don't want to know, simple as.

I was diagnosed back in late 2010 after visiting the GP March that year with itching (and fatigue at the time). I had abnormal LFTs and beginning November that year I had the antibodies check of which the AMAs were postive. I was diagnosed with PBC Dec 2010 and started urso.

You can be asymptomatic with PBC which means you have no symptons and also your LFTs and GGT are normal. You are usually monitored in case the LFTs start to slowly rise at some point.

I had a scan mid-2010 and it showed me to have pretty normal liver and surrounding organs. The consultant did say he could see the scan quite clearly and said it was looking fine.

As I understand it liver scarring comes over time as for a certain period of time the liver is able to continually repair itself.

You may never go on to have symptons or abnormal LFTs even if you were to have PBC.

Good Lulck with your forthcoming appointment, please keep updating.

[Foundry9]

Hi. My LFTs checked monthly and usually ok. I have PBC for the last ten years and had two livery injuries. The only time my bilirubin went off the scale when after taking some abx for a chest infection, caused the problems. I have fatigue, joint ache, sore gums (also have coeliacs) Don't get the itch yet thank god and don't take my Urso, it's awful to take.

[cee_cee]

Sometimes it's hard to accept there is anything going on at all with something like PBC, especially if you are asymptomatic. My LFT's were all over the place until I took Urso and so I am now within 'normal' range according to my local consultant and GP. The only evidence is an ache on my right hand side and the dreadful tiredness. Fortunately, I have now been picked up by Queens in Birmingham and so far they have been wonderful to me. The consultant there has finally managed to persuade my husband that the tiredness I feel is a genuine and often problematic symptom, which has finally stopped the "you just need to do more exercise" comments. I feel reassured I will be looked after by the team and that's why you need to go along to your appointment so that you have all the information you need, to ask all the questions you want to, to feel supported and to put your mind at rest.

[Tessa]

Hi there, yes. My LFT's are normal and I have a high AMA reading. I was diagnosed in 2008 and my LFT's remain normal. My symptoms are as follows:

Fatigue - which can be debilitating at times.

Cognitive dysfunction - scary at times but also hilarious at times.

Joint and bone pain.

Itch.

Digestive problems - bloating/swelling after eating, gas, nausea etc.

Easy bruising, easy bleeding.

Dry mouth, throat and eyes.

I've probably forgotten other things but that's enough for now LOL. I don't know what stage I am and don't feel I need to know. Knowing the stage won't change anything for me. I was scared at first but now I just manage the symptoms as best I can and get on with things. Try not to worry. I know that's easier said than done but as you learn you will probably feel more in control of it. All the best x

[recipes in reply to Tessa]

Hi, I also take urso and back in June I had all of my test done. like blood lab, scans , etc. every thing seems to be ok but I have fatigue so bad that I don't feel like doing a lot. I have all of your symptoms as well. I am glad you mention about the bloating, gas because I have it and I was wondering if it could be from my pbc. I have also had back surgery about 11 months ago and still have some pain so that doesn't help with fatigue. Thanks for listening

[skywalker]

Hi Tessa

Do you take urso? I'm trying to get my head around PBC because my lfts are always normal

But then the fatigue is crippling me, I haven't been able to stand up hardly today! and have mottled hands, gas, bloating, aches and pains.. vitiligo..dry eyes really bad sometimes I have to buy drops...

I don't want to be staged either.... waste of time!

But my gastro as diagnosed me on strong AMA and symptoms.. My lfts are always good as is my liver.

I,m looking for reasons to accept my diagnosis

Oh forgot to mention I itch too

Thanks for replying xx

[GrittyReads in reply to skywalker]

Hi Skywalker, Good to hear about the aromatherapy course (your other post), but so sorry to hear that this situation is still so troubling.

I'm sure you've said this before, but have they checked you for all the other autoimmune conditions that are often linked to PBC, and which some of the subtypes of AMA are linked to? eg lupus, Hashimotos?

I agree about the staging. Also, I reckon I'm more stressed about the idea of having PBC than if I properly knew I'd got it, so recently I've been doing other stuff to try and calm myself down: exercise, yoga, discussion group and am thinking of reflexology and homeopathy - I'll still stay with the medical route and not do anything dodgy, but I need some outside input. Take care