After 5 year of trying to lower the liver's enzymes I got it now with my vegan diet liver function is normal now. Is my liver still fat?

[Dollyhenriquez17]

Is the Sirrocis in my liver still there? Cholesterol still is high 234 try glycerin 166 and I do not want to take any Lipitor or any other chemical due to my liver Sirrocis. Please through some light.

[Hidden]

Hello Dollyhenriquez17.

I think you mean you have a fatty liver? This can occur with PBC as well as cirrhosis.

I would suggest you speak with your doctor with regards to cholesterol you mentioned as cholesterol tends to test out higher with PBC but it could be what is known as the one that is good. There are different types of cholesterol. Mine has been said to be of no concern as it was higher prior to being told I had PBC in Dec 2010.

Even if you have cirrhosis it can still be a case of it remaining so for many years and never progressing further.

[janey_babs]

Hi, I'm not sure exactly what you are asking. I'm not an expert and don't have fatty liver but do have two other autoimmune conditions on my liver. An ultrasound should be able to tell if you still have a lot of fat on your liver if that is what you are asking...cirrhosis is the scarring so not sure it would go away. I have read a lot about fat burning fat from organs and how a low carb diet can help with that. I'm not sure if this helps.

[Hidden in reply to janey_babs]

Apparently fatty liver cannot be cured but controlled by diet. Once saw a programme on tv where an obese man in his late 20s and a man in his mid-40's were both having liver scans live on tv. The obese man was diagnosed with a fatty liver, the over-40s man was said to be in a cirrhotic state due to being an alcoholic.

I've not got fatty liver or cirrhosis but with fatty liver a patient often gets what are known as greasy stools that can be difficult to flush away. I once filled out a survey on British LIver Trust site I think it was and it was asking about treatment you received, etc when finding out about your condition, tablets, etc and when I clicked on the PBC part for what I have, it came up with 3 stages: inflammation, then fatty liver and then cirrhosis. I think a fatty liver would come before cirrhosis but someone would have to quiz their consultant here as I don't go in for staging with PBC, I go off how I am feeling and the LFTs (I'm doing pretty much ok at the moment, just got the irritation of the itch that is prevalent at night).

[janey_babs in reply to Hidden]

You can get staged via a biopsy which looks at how much damage there is... I'm interested in the fact you said pbc stage of fatty liver, where did you get that information? I have done a bit of research and never come acros that (or maybe I dont understand what I have read). I know fatty liver disease is another condition and through diet you can reduce the fat on your liver (and other organs) I don't think you can reverse the scarring if you have any though.

[Hidden]

Hell jenny_babs.

Yes I am aware of staging by liver biopsy but I've never had a biopsy (I was diagnosed via symptons at the time - itching and fatigue (only have itching now), abnormal LFTs and GGT plus the AMA blood test).

I'm a bit dubious about staging via biopsy due to the fact the liver is the largest organ in the body and the only area where the biopsy is taken is the one that is examined. The liver can be damaged in another place or maybe damaged where the biopsy is taken and that would result in to me, not fully conclusive. Because I am in the UK it doesn't seem to be the norm to take a biopsy unless there is any doubt.

I clicked on a survey and I am certain it was on the British Liver Trust website some time ago now and it was aasking questions about experiences with doctors, tablets, etc and when you clicked on the condition that you had been diagnosed with, there came up a few choices that were headed as 'stages' and fatty liver was the 2nd one. I had previously read that stages are in numbers but I personally do not take any notice of anything like this at all.

I am quite confident today that via an ultrasound (as 2 guys had live on tv on their livers not long before I was diagnosed with PBC later 2010) and also along with blood repeats it is quite known how one is doing with PBC. Plus you'd also take anyh further symptons into consideration too.

Fatty liver is also a seperate condition also but so is cirrhosis as you can get that through other things too but you can get to that stage in PBC as we know.

[Karaliz]

Hi Peridot,

I hope you don't mind my correcting you but you seem a little confused with the staging of PBC which is concerned with inflammation, fibrosis, loss of bile duct and finally cirrhosis and nothing to do with fatty liver which is a separate issue. Various staging systems have been developed but those proposed by Ludwig et al and Scheuer are probably the most prominent.

Stage 1: Portal stage of Ludwig - Portal inflammation, bile duct abnormalities or both are present.

Stage 2 : Periportal stage - Periportal fibrosis is present with or without periportal inflammation or prominent enlargement of the portal tracts with seemingly intact newly formed limiting plates.

Stage3:Septal stage - Active and/or passive fibrous septae.

Stage4:Cirrhosis - Nodules with various degrees of inflammation are present.

As far as liver biopsy goes,it still remains the most definitive way we currently have of assessing liver damage and disease progression which can then dictate treatment. As long as a good sized sample of at least 15-18 mm in length which contains 6-10 portal triads is taken , then this is considered adequate. I agree that there has to be a definite reason for biopsy and the decision should not be taken lightly. However, as a person with PBC who is a non responder to Urso and has significant liver damage, I am very grateful for the biopsies i have had as they have allowed my Dr to exclude other diseases and plan for the future. The fibroscan, of which I've had three, seems of limited use in this scenario as it only tells you what you already know via significantly elevated LFTS - that you have severe fibrosis !!

Hope the above makes sense !

Karaliz

[janey_babs]

Thanks karaliz and peridot. It seems awful confusing doesn't it. Karaliz, how do you manage the pbc. I didn't respond to Ural either but I have overlap syndrome with aih.

Thanks

[Karaliz in reply to janey_babs]

Hi janey_babs. I responded to Urso initially when I was diagnosed over 10 years ago, although not completely. The consultant I saw then tried me on high dose Urso which made no difference ( aim was to try and bring LFTS right back to normal but this never occurred. For about 7 years I almost forgot I had PBC as very busy with 4 children and I work as a nurse. Other than fatigue had no symptoms. However 3 years ago on my visit to my current specialist, he discovered my LFTS had deteriorated significantly for no apparent reason To cut a long story short, he sent me for many tests - US, MRI, Fibroscan, repeat of all bloods, Renal specialist and finally a liver biopsy. This revealed stage 3 fibrosis. My Dr classifies me as one of a minority who have fallen into the category of non- responders to Urso. Although he insists I take it as says LFTS would be even worse without !

He wanted to rule out AIH with biopsy as very puzzled by sudden decline. He recruited me into the Obeticholic Acid trial 13 months ago. My results were worse at 3 monthly intervals all year so he is convinced I was taking the placebo. I started the 5mg dose in December so will find out in March if there is any improvement. Other than that, he keeps a close eye on me which I am very grateful for- eg platelets are dropping so will have another ultrasound. In the end, though, as you and everyone else knows,janey, the disease will progress to the beat of its own drum. There just does not seem enough known to make any predictions.Thanks for your input. How are you faring with both PBC and AIH ? We did discuss steroids to try and reduce the inflammation but am very reluctant as this would only be a temporary reduction. I understand they are vital in AIH.

Karaliz

[cavi in reply to Karaliz]

Hi Karaliz Yu mention that your Platelets are dropping so are mine when I got my last blood tests they are now 79 have been on Urso 12 mts now other results are improving slow but sure but Platelets are dropping Consultant says this can happen with PBC and are not dangerously low yet but I do worry I have got a slightly Enlarged Spleen which can also cause them to drop I have started to get a few little nose bleeds what is your Platelet count if you don't mind me asking and have you got any symptoms that this may cause I go for my yearly Ultra sound end of Feb hope they find all looks good Take Care

[Karaliz in reply to cavi]

Hi Cavi. My platelets are not as low as yours if our ranges are the same - normal range here in Australia is 150-400. My last result was 140 but has slowly dropped over the last few years from the 300s downwards. I have no symptoms so I appreciate your concern regarding the nose bleeds. One of my Drs explained how the spleen can sequester ( hold on to/or isolate )platelets leaving fewer circulating platelets when there is liver damage. Like you I am about to book an ultrasound so more will be revealed. Good luck with your ultrasound and I look forward to hearing how you are.

Karaliz

[cavi in reply to Karaliz]

Hi Karaliz Thanks for your reply nice to know we are all here to read and help how we all feel and what our body's are having to cope with I know we are all different but most of us are getting the same things going on if not sooner or later so feel comforted with all reply's Take Care

[janey_babs]

Karaliz, that sounds pad especially the progression to stage 3. I am on azathioprine ans was on high doses of steroids for a long while .....awful side effects but given they did their job I shouldn't complain too much (although I did complain a lot at the time....especially the slow reduction to come off them). My main symptom was the fatigue although I did get a little night time itching and joint pain. I have been fine although the last couple of months I feel a bit fatigued again (nothing like as bad as last time though) I can't help but wonder if the darkness is effecting it. I am now also suffering cold hands and feet and sometimes pain too . Trying to work out if raynauds or medication side effects. You seem very well read up on subject. Have you come across anything about sad lamps in your research. I haven't but wondered if they might help the fatigue. I keep looking on eBay as I don't want to waste all that money if it doesn't work

[Karaliz in reply to janey_babs]

Hi janey_babs. I don't know about the effectiveness of SAD lamps although I am familiar with the theory behind them. I live in Melbourne Australia and we are about to head into the second heat wave in 3 weeks, meaning copious amounts of sunshine and intense heat. This does not seem to be a factor for me regarding fatigue. I know it got worse the year before the deterioration I described in the above post and has continued on - I must admit working in my physically taxing job contributes significantly to my fatigue so hoping to remedy that this year.I guess the trick is to identify what exacerbates the tiredness and try and find a solution. Do you feel better during sunny spells janey ?

If you notice a definite improvement then the lamps may indeed work for you. Maybe try a post asking those who may have experience with them ?

I also have Raynauds - this is a pretty common condition along side other autoimmune conditions apparently.

Re my own research I have been very fortunate in that I work in a public hospital so have had access to doctors and research that I would not have had otherwise. My consultant is part of the liver transplant team attached to this hospital and he has been very generous with his time explaining and answering questions. The Dr running the OCA trial has also spent a lot of time with me - so very lucky in that regard. Having said that the U.K seems to be where most of the research is taking place and PBC seems to have a higher profile there would you say ?

I hope you have success with fatigue management and that your health stays stable, janey.

Karaliz.

[janey_babs]

Thanks, I wouldn't say a higher profile per say. I do think that it is so unknown even among GPs. Certainly the pbc foundation does a lot to improve awareness abd raise funds for research. I think you should be able to access their website. They were so much help to me and their self management workshop was brilliant....I was able to meet and speak to others including a lady around the same age as me with overlap syndrome. My specialist has been great (i heard a few tales at the workshop). I think I might follow your advice and put a shout out on here for people's experience of sad lamps. I defo feel I struggle more in the winter.

[Karaliz in reply to janey_babs]

Thanks janey, I do receive the Bear Facts and think the Foundation is fabulous. Good luck with the lamps.