Newly diagnosed with liver issue - support appreciated

[cass3]

Hello, I'm feeling really terrified so I would very much appreciate your support. I'm awaiting an appointment with an hepatologist following an ultrasound which showed I have mildly abnormal liver texture. My blood tests came back normal and I am not a drinker. I really do not know what has caused this frightening condition and it seems that there is nothing much one can do about it. I originally went to my doctor with persistent abdominal bloating and it was she who suggested I have an ultrasound. I am currently caring for my mother who has terminal bile duct cancer but I'm not sure our liver problems are related as, despite abnormal liver function tests, I seem to remember that my mother's liver surface is normal. I am unclear whether having an abnormal liver texture means I have fibrosis or cirrhosis. I am also concerned that as the ultrasound and blood tests have not shown a cause, they may decided to do a liver biopsy. I have a few thoughts as to what may have caused my condition (long term abdominal fat, high cholesterol or maybe years of topical Nizoral use) but, as I said above, I really don't know. Any thoughts or help with diet would be much appreciated.. I'm a massive foodie so dread the thought of cutting out most of my favourite foods. Thanks for any help you may be able to offer. Cass

[Michiganpbc]

So sorry you are having these problems. I have PBC and this is found by a positive AMA and liver biopsy; I can tell you that a liver biopsy is a good way to find out exactly what you have and don’t have. Don’t get to worried if you don’t have a diagnosis yet it takes time and you can really get scared reading things on the internet. Try to find out what you have then let us know so we can share our experiences with you. Hang in there.

🌻🌹🌞🙏

[cass3 in reply to Michiganpbc]

Thank you so much for your response. I feel much less alone with this now. If they manage to find out what I have, I will certainly let you know. Really sorry to hear about your PBC. Do you eat a special diet?

[Michiganpbc in reply to cass3]

Thanks, it took awhile to wrap my head around that I have it but my doctor said it’s rare to die from it now, I am stage 2 so it’s early stage and I am responding to the treatment 🙏 I have learned that less beef or anything fatty is better so I eat healthier low fat which seems easier to digest.

[TheMaestro07]

Hello Cass3

First step of receiving support - reaching out! So well done on doing that. I joined this forum about a month ago and found it a useful way of sharing experiences and learning from others.

I have Budd-Chiari syndrome which is rather rare and took a long time to diagnose - unfortunately they attempted liver biopsies on multiple occasions but these failed due to heavy fluid retention. Generally speaking though and from what I understand, I would agree with Michaganpbc above in that a biopsy can be a useful way for the medical staff to offer a diagnosis. In terms of food, for my specific condition a reduced-salt diet is the main thing (I tend to avoid other things just because of the potential clash with my medication) but I am also vegetarian, so in some ways this helps and in others it can hinder! I also agree that lower fat things (like reduced fat dairy products for example) can make a difference. I also try reduced salt/sugar options compared to normal ones and then add a dash of sauce instead to give it a different flavour. Eventually one gets used to it

Shout if you ever need to chat - I know it helps me to share my thoughts with others! Keep positive too

Best wishes

Mish

[cass3 in reply to TheMaestro07]

Thank you very much for your message Mish. It means so much to connect with others on this site. My diet has gone to pot over the last year and a half, caring for mum who has liver cancer. Your diet tips are very useful. I tend to cook a meal for mum, then stuff my face with fatty, salty or sugary food, so no doubt doing all the wrong things! I find I just don't have the time or energy to cook healthy stuff for myself. It's not till late November that I get to see the specialist (been waiting since 1st September), then will need tests to establish what's happening, so I'm not really sure what to do in the meantime. Feeling very worried (can't quite believe this has happened) but it helps to know others are here. Thank you again for getting in touch Mish.

Cass3

[TheMaestro07 in reply to cass3]

Sorry to hear about your Mum. It must be difficult, so try not to stress too much, do what you can. I find the same, that sometimes I just can't be bothered to have something decent but instead something convenient which can often be things that have higher levels of things that aren't great for you. I go through phases! In the meantime I guess it might be useful for you to try new things, speak to a dietitian, try things with reduced levels of salt etc. Hopefully seeing the specialist in Nov will help you moving forwards - good luck!

Mish

[cass3 in reply to TheMaestro07]

Thank you Mish. I am here to support you too.

Cass3

[matt137]

Hi Cass. My journey into the cirrhosis club started with a similar ultrasound result.

'course and fatty, abnormal liver texture' although I did have other symptoms that suggested something was wrong.... and I was a heavy drinker.

Its only at fibroscan stage (or biopsy) that they confirm a cirrhosis diagnosis. I was told that hepatitis (liver inflammation) can also show a course / abnormal texture, so you might just have some swelling / inflammation down there. I wouldnt panic yet, all is not lost.

All the best

[cass3 in reply to matt137]

Hi Matt, thanks very much for your reply I am sorry it's taken me a little while to respond. I am afraid my mum hasn't been at all well so I've had to dash straight there after work each night Today is my first chance to reply to e-mails. I am very sorry to hear about your coarse liver diagnosis but it's a great support to me to hear from someone with the same condition. As far as I know mine is not alcohol or fatty liver related (I believe fatty liver shows up on an ultrasound). The comment that accompanied my result was 'of unknown aetiology'. I was tested for hepatitis and the results came back negative. That's why I'm really concerned about what might have caused this.

Best

Clare