I was diagnosed early stage 1 in 2000 and have responded well to Urso, LFT's came back to almost normal in the first year and have stayed there since. I went for a fibroscan yesterday. Although I have to wait for the liver specialist to interpret the results, the nurse who did the scan told me there was no sign of fibrosis, which is great news. But there was sign of fatty liver, which is news to me. Now, I have been extremely careful with my diet. I am vegan, don't eat bread, cakes, biscuits and hardly any processed foods, just basic organic fruit, vegetables, seeds, nuts and plant milk (oat). I said this to the nurse, and she said it was probably genetic. I also have high cholesterol, but have no other markers for cardio or stroke so have refused statins. The only fats I eat are from nuts and olive and coconut oil. Does anyone have any information on fatty liver and what dietary or natural treatments for this? Thanks!
Fibroscan shows slight fatty liver - PBC Foundation
Fibroscan shows slight fatty liver
Hello! I don't really have any advice, but I'm in the same boat and would love to hear what others suggest. I have early stage PBC that's responding well to ursodiol, but since starting the ursodiol I've gained weight (mostly due to the medication, but menopause is also a likely factor) which in turn has caused fatty liver for me (per my last fibroscan). My cholesterol has also spiked, but my other cardio markers have been fine, so no statins for me either. I'm also very careful with my diet — modified autoimmune paleo diet. My doc thinks the PBC is the cause of the high cholesterol.
Well. My experience... ive had it for years. My fibroscan shows cirrhosis from NASH. Which I believe is hereditary and also a metabolic issue. My score indicated I have only 25% of my liver working. It’s very shocking indeed! Never drank of course. But this fatty liver was inherited I do believe! My grandpa n my mama both had it. So I take statins bc my cholesterol is fine but my triglycerides have been up to 2000. And you know that’s not right. I’m not a large person nor do I eat much. So yes GENES😢
Over a year and a half ago I was diagnosed with a bad fatty liver by the nurse at my fibro scan , I walked it away .....10000 steps a day plus I take Inulin ( from Holland & Barrett )....I no longer have a fatty liver and I don't watch my diet , I eat what I want in moderation . If you are in the UK there was a tv programme a few years ago with Angela Rippon and she was diagnosed with fat around her internal organs .......she was told to take Inulin ....google it ......it's a fibre powder with no taste ( it can make you a bit windy and helps with going to the loo but no windy pain or other side effects ) My fibro scan results went from 13.5 and complete fatty liver down to 7.5 and NO fatty liver......I also lost 2 stone in the process
Thanks for info. That is so encougaging to hear. I will look into using Inulin. I've had a fatty liver for many years and take a low 5mg Statin to control the cholesterol. My Fibroscan score it was 16.5 two tears ago, hope to have it done again in May. Well done!
Me....
2019 started with two heart attacks, pneumonia, and weeks stay in Hospital after bloods came back high ALP (1222).
September diagnosis of Primary Biliary Cholangitis with negative for Lupus.
I've seen medical professionals on almost a week basis till now. My lungs and throat play up the most but on the backburner till now as too much going on at the time.
I understand, as I've been taken off statin, that usually it's the good cholesterol that's high...in patients with PBC and fatty liver is to do with the condition and not usually linked with higher probability of cardiovascular conditions.
I was reassured that my mild liver damage wasn't caused by anything I'd done and was because of my condition.
Healthy eating and good lifestyle helps our condition and our pbc journey transition and future outcomes...preservation shall we call it.
Fantastic advice and guidance is available from the PBC Foundation - free invaluable support and advice and aids such as their magic app to record mood, symptoms or blood results.
Anything you are worried about they are there to help.
There isn't much you can do about results but staying positive and living the best you can does.
I'm sending you a big big hug, don't worry, we are here supporting you.
Happy New Year to everyone and let's make 2020 a good one!
Love and best wishes
Maxi
Aka...knackered and old!
I am having problems with my lungs and throat also and I just don't understand why. Pneumonia 3 years in row. I finally have got an hepatologist that will have me see pneumologist. Waiting for the appointment 🤞.
Do you feel as if something in your throat? Medical professionals think I'm crazy and can't find anything wrong.
Please contact me direct if you get anywhere with this.
Lungs, oh you have my sympathy - its awful.
Since June feel I'm falling apart. It's this website and fantastic members that have been a comfort (huge support) and somehow im not so lonely in my constant illness and pain.
(Those close are exhausted by my progressive illness and to be honest get fed up with putting on a face ....feels good to be brutally honest without judgement or fear)
2017 my dad was taken into hospital for pneumonia and died drinking a can coke. He had raised liver function but not diagnosed with pbc...sadly was taken into hospital after returning home from the GP, was hit by a taxi on a pedestrian crossing. The hospital said the throat wasn't connected to the accident or pneumonia and couldn't explain but placed him on "thickened fluids " to help him swallow.
My dads partner wasn't informed of this and on asking for a drink she left the can for him.
It makes me slightly paranoid but I know it's not all in my mind....some days are better than others.
Today being not so good.
It's cold here today, but enjoyed a rare day out. My family surprised me with a wheelchair...I had previously refused...but it was so lovely being outside, today I didn't care.
Keep in touch x
I've always liked articles that give the "why" with the why not". Found this and thought I'd share
Hi, it sounds like you are following the best diet to avoid and reduce LDL cholesterol etc. Daily intake of green leafy vegetables particularly broccoli and Kale are meant to be good at reducing cholesterol, (though don't eat spinach or, chard more than 2 - 3 times a week), and one to two tablespoons of ground flax seed each day can help reduce cholesterol. Fruits and vegetables on the purple, red and blue colour spectrum may help with non fatty liver disease -berries, red cabbage, grapes, red onion
You're probably already aware of the Nutrition facts .org website nutritionfacts.org/ but if not that has lots of information about how what we eat can impact on our health. Their isn't anything specifically PBC related on there but there are lots of articles on cholesterol, and some about Non Alcoholic Fatty Liver Disease. nutritionfacts.org/2019/02/...
It's an American based site so the cholesterol levels they refer to are very different to those I've been given in the UK.
I had seen something related to the ratio of Omega 3 to Omega 6 in vegetarians and vegans You might want to check you are getting more Omega 3 than 6 just to reduce other risks - the ground flax seeds can help with that.
Great to hear that the Urso has been keeping your PBC in check. I'm relatively newly diagnosed - early September and put on Urso in November. (Though my rheumatologist thought my arthritis was connected to my liver over 10 years ago!)
My vegan diet has room for improvement and I certainly need to do more exercise as I have started to gain weight since taking the Urso
As others have said we do sometimes have a genetic predisposition to certain conditions but I'd rather do what I can to minimise the risks which may include adjusting my diet than take pills - but that is a personal choice. Hope you find something that helps.
My understanding is that fibroscan does not measure fatty liver! It measures stiffness and was originally designed for testing the ageing of cheese! (which is fatty anyway!)
Fatty liver can only really be diagnosed with MRI (with elastography if possible) or biopsy. If you have an elevated BMI then it's best to bring this into normal range. There are loads of people with fatty liver but not PBC. It's not a good thing whichever way.
Hope this helps. William