Idiopathic NASH?

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?

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.

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. ehlers-danlos.org/gastroint...

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

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.

Thanks,

Natasha

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.

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?