Idiopathic NASH?: Hi all, I posted here... - British Liver Trust

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Idiopathic NASH?

Hi all,

I posted here a while back when I was first diagnosed but had other health problems going on. My gastro has now confirmed that I have idiopathic NASH and this has been confirmed by a rheumatologist with interest in hepatology. Biopsy proven a year ago and monitored with LFTs and fibroscan to be NASH with mild fibrosis. I've been told that as there's no apparent reason I have it there's no real way to stop it other than to not aggravate it. I've also recently started losing weight for no reason, dropping three jeans sizes in around a month. I was wondering if there's any chance it looks like NASH but is actually something else. As I've said: no metabolic disorder, no excess weight according to doc, healthy diet as confirmed by dietician, don't drink or take regular meds. I have got a kidney stone habit, gastro oesphogeal reflux disease and Ehlers-Danlos Syndrome and am a 21 year old female. Could it be genetic if it is indeed NASH? How likely is liver failure if I have fibrosis at 21 and no obvious risk factors?


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have doctors reviewed your diet? also do you exercise? F1 and F2 Fibrosis can be reversed if you stop the cause, but that appears to be your problem, the doctors dont know the cause. But something must be going on for fat to be collecting in your liver. What were your Fibroscan results?


Yes, I have been reviewed by a dietician who said I was doing everything right, and I do physiotherapy and hydrotherapy but I have a chronic illness that makes most exercise dangerous for me because my joints dislocate (EDS). From memory it was top end F2, with no change between my biopsy a year ago and the fibroscan in December. My gastro is great, but he has said he can see no reason for me to have NASH. It was only caught because I had my gallbladder removed last Jan and the surgeon saw it in the pre-op scans. My gastro said it can sometimes happen that they have no idea why, but reading on NASH as opposed to NAFLD online is limited already, and there's virtually no info on idiopathic NASH.

In the last year along with the NASH diagnosis I was diagnosed with Ehlers-Danlos Syndrome as well as Gastro-oesophogeal Reflux Disease. I'm as baffled as you by the whole thing, as prior to this I was a healthy twenty-year old.


Silly question,but is the dietitian focusing on a liver friendly diet ? What you need to do is get copies of every test you have, with health issues it pays to be hands on, you need to manage your condition, get to know what the blood tests mean (google) so soon you will be able to ask the right questions at doctors appointments, take someone with you, 2 sets of ears are better than one.

Also the GERD you have could be a result of an irritated liver. Ehlers-Danlos Syndrome is interesting,thats a collagen problem, thats what causes the liver to scar up. what have the doctors said about this issue?


I do keep all my test results - when I can get them - and my liver functions okay right now apart from my ALT which is constantly raised. I think the EDS is at the root of a lot of my problems but with more than a handful of consultants who are in constant disagreement about the scope of EDS it's hard to reach a consensus. Plus rheumatology - who should be managing my EDS - have sort of tossed me into the wind with yearly follow-ups and no real investigating. I'm doing the 100,000 genome clinical trial to hopefully - eventually - get some progress but it's like a giant stalemate between me and my body at the mo.

The dietician was focussing on liver friendly, but I'm intrigued by the GORD/GERD liver link as that would at least explain why I had the two crop up suddenly. I really feel there's a missing piece in my medical situation that would make everything clear. If it were the collagen then it's not fantastically useful being incurable and untreatable, but I really would rather just know as opposed to hovering about with no idea why my body's gone kaput.


So sorry you are having to deal with such complex health issues and so young too. Makes me feel bad that I didn't respect my body very much. But what you do have on your side is finding something is wrong early, some people end up going to the doctors in acute liver failure and its too late.

What is your ALT, is it coming down? IBS, GERD/GORD are diagnosed a lot and some later find out its the liver that is the root of it, of course they can and do happen without liver issues.

I agree with you, the doctors need to keep pushing and trying to get you the best approach, they are missing something.

A lot of studies are showing Coffee and tea, particularly coffee have anti-fibrotic properties, obviously consult with doctors first, but it may be worth increasing your coffee consumption.

With all the issues you have, getting that ALT down is the most important, but its seems there is a lot of things happening here. I pray you can find some answers.


Does thyroid disease run in your family? I ask because hypothyroidism can be a cause of NASH. Both run in my family. Please research N-acetylcystein (NAC) to help with your liver enzymes. My alt, ast, and bilirubin were all very high a few years ago and my doc said I probably had fatty liver disease like my mom, but all enzymes are normal now after taking NAC.


Also, are you taking any allergy medication? A friend's son nearly had to have a liver transplant till they figured out it was the Claritin he'd been taking for several months. He stopped and all enzymes went back to normal.


Thank you all for replying, it's nice to not be so lonely on the medical adventure of a lifetime! My ALT is pretty constant but not wildly high, only about double the upper limit. While I appreciate the advice about N-acetylcystein (NAC) I unfortunately can't take supplements as I am a high risk kidney stone former, and have one about every 6 months - this was a big issue when I had low vit D as I couldn't take the vitamin C supplements they make. With regards to medication I was on nothing, but since the reflux started I've been on pantoprazole and occasionally ondansetron for the vomiting. I don't drink and I only ever take paracetamol at half dose, and only when my pain is high from my EDS (except when I have a kidney stone - no need to be a masochist!)

Coffee and tea sound like they're worth a try, and as long as I don't dose it up with too much sugar that isn't against any recommendations so thank you! Luckily I have no symptoms with the NASH (at least, none that are differentiable from my other conditions) so it's more of a long term worry than an immediate pain and ascites sort of worry.

Insofar as the thyroid goes I have a pretty hardcore family history as well, with the female line all being completely lacking in functioning thyroids. My docs were pretty excited about that one but I persistently test exactly middle of the good normal range, even of the free T3 and T4s.

The next thought on everybody's minds was autoimmune, but again I've seen two rheumatologists and ten vials of blood later - no autoimmune disease. Except in my last round of tests I was positive for Hughes disease, but you have to have a three month follow up test for diagnosis, and it's a blood clotting disorder so I'm not sure it fits either.

Again, thank you! I figure brainstorming with other people living with cruddy livers can be nothing but helpful - we're all a little bit expert in a way.

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No harm in bouncing some ideas about! I just had another thought, have you been abroad at all? There are all kinds if things you can pick up overseas that can affect the liver. I remember a case I was reading recently where a doctor became ill and after a myriad of tests there couldn't find what was causing raised ALT etc. One doctor had a brain wave and they found she had been miles out of town and had ingested some water with some kind of virus or parasite in it, I cant remember what the heck it was called though.


Unfortunately not! That would be a good one though. I'm still curious about a genetic element - the EDS is genetic and as such I don't have a lot of trust in my genes right now...


Good Afternoon,

Firstly can I suggest that you asked to be referred to see a hepatologist. I am sure your gastro is doing a great job but a hepatologist specialises in the liver and may be able to diagnose the cause, or at least give you some advice to help stop the progression, of your NASH. I had a quick look on NHS Choices and the website below and neither mention any link between EDS and liver problems however, there is quite a lot on gastro related conditions.

A build-up of fat in the liver can be caused by many things; some prescription medications, being overweight, insulin resistance, high blood pressure, alcohol, a high cholesterol level and lack of exercise are the most common but not the only causes.

Too much fat in your liver is caused by the build-up of fats called triglycerides. These are the most common fats in our bodies. They belong to a group of fatty, waxy substances called lipids, which your body needs for energy and growth. We get triglycerides from our diet. Foods high in fat and sugar contain high amounts of triglycerides. They can also be made in the liver from sugars and proteins.

The liver processes triglycerides and controls their release. The triglycerides are combined with special proteins to form tiny spheres called lipoproteins which are sent into the bloodstream to circulate among the cells of your body. When the release or ‘secretion’ of lipoproteins from the liver is interrupted or the flow of triglycerides to the liver is increased, there will be a build-up of fat in your liver cells.

Have you been tested for genetic causes? Wilsons (copper build-up), haemochromatosis (Iron overload) or rarer conditions such as alpha-1 antitrypsin deficiency (a faulty gene)? All of these can cause scarring of the liver?

Kind regards

Sandy Forsyth

Patient Support and Information Manager

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Hi Sandy thanks for the reply.

I just checked after I read your message and my doctor is a 'consultant gastroenterologist and hepatologist'. I will ask him about those tests, as I was diagnosed under the care of a hepatic surgeon who removed my gallbladder so I'm not sure whether maybe they both assumed the other would test me for the rarer causes. I know after my biopsy they did a test on the cells to check for Wilson's which was negative, but I will find out about the others.




You could try asking to see the original biopsy report and go over it again. There must have been something in the tissue sample that led them to diagnose NASH in the first place, but they may have missed something or maybe whatever they use to diagnose NASH can be ambiguous and could diagnose something else instead. You are right to want to get to the bottom of the elevated ALT as all the time it is elevated there must be inflammation in your liver, which will ultimately cause fibrosis.


Can’t answer your questions directly but it is worrying so speak to Specialist ASAP.


Hi Splodge,

Thanks for taking the time to respond, I hadn’t updated this post but I’ve actually had very good news on this front - my condition did progress and yearly and then six monthly fibroscans showed increasing fibrosis. I was unfortunately not a candidate for any clinical trials which were explored as my grading worsened, due to my comorbidities, specifically my genetic illness Ehlers Danlos Syndrome. However I was diagnosed about a year and a half ago with Mast Cell Activation Syndrome which can arise with the genetic condition and started on treatment for that - at a fibroscan a year after starting that treatment began my fibroscan was back at the level of a healthy liver and I’m now in five-yearly review. My heptologist believes this mast cell condition may have been responsible for or exacerbating the liver condition and damage and is in liaison with specialists in that area about this.

I didn’t update because I’m personally quite uncomfortable when people post about supposed ‘cures’ they have anecdotal evidence of as it’s misleading and implies there’s some trick that might work for everyone. In my case I’m very pleased that for now my condition is in remission and that further research is going on in the field of mast cells and the immune system’s role in lots of chronic illness, but I would caveat my case by stressing that my genetic illness and related mast cell condition are rare and poorly understood, and that despite frustrations I feel medical advice is the place to start with any potential treatment, and it would be irresponsible of me to share my story and details of my medication that may have helped without saying there was no sign that this would have the positive effect it did have and that it may not have a causal relationship to my liver recovering.

It has been stressed to me that I’m not cured, but am in a better position than I was, and I don’t want to be responsible for anything that causes any harm to others by implying it is some sort of general fix.

It may be the case that people in the very unusual position of having a similar collection of conditions may want to ask their hepatologist about any developing research in this area and that’s the reason I’m sharing the circumstances, and because I wouldn’t want you to worry about me when I’m thankfully improving. I am very appreciative of your reply though and wish you and everyone in this forum all the best. The advice and comfort this forum provided me was vast and I may well need more of it in the future.


I’m not aware of all your conditions but I do have a friend with EDS. She suffers enormously with associated health issues and it seems that, with this problem, it always seems to be accompanied by lots of other problems but not necessarily the same for all. As far as I know she’s never mentioned Mast Cell Activation Syndrome, nor liver disease but, if you don’t mind I’ll tell her about this disorder?


Of course you absolutely can - I was fortunate to be referred to a good specialist for POTS who, having lots of similar patients, referred me on to a host of specialists who handled a lot of my symptoms and greatly improved my daily life. The Mast Cell Activation Syndrome actually seemed to be causing a lot of the problems with my flare ups - I would really recommend the EDS forum on here for your friend, there’s a few of us on there who try and point others in the direction of good consultants because there’s a bit of a lack of doctors who practice in the field for it. She’s lucky to have someone like you looking out for her!

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