Hi All, I have been putting off posting on here as I thought I would eventually get some answers from seeing the various doctors and specialists I have been to over the past 3 years! Alas this has not transpired and I am still as confused as the day I started this journey. It began with pains in my abdomen and rib cage on the right side with nausea. I was also experiencing quite bad hip pain on the right and left side. This progressed to pains all over my body and including my mouth and face. I also started to experience chronic fatigue and the doctors tested me for everything under the sun and came to no definite conclusions. Whilst all this was happening I was experiencing high Alt levels (in the 80’s) with slightly raised AST levels also. All other liver function tests were normal (bilirubin etc). I had an ultrasound and was told I had a fatty liver. I have always been honest with them and said that I was a drinker, a bottle of red after work most days for the past 10 years which they paid little attention to diagnosing me with NALD!. I paid for a fibroscan recently returning a reading of 4.3 and the fatty liver had almost gone due to me modifying my diet and drinking less. They have always stated that my liver looked a ‘normal’ size after Ultrasound plus in a CT scan I had.
I was eventually diagnosed with Fibromyalgia and Acid reflux disease plus some mild gastritus. However the pain in and under my ribs gets worse if I have a few glasses of wine and I am terrified that I may have un-diagnosed Alcoholic Hep! What do you guys think? The doctors are calling me paranoid and it’s the nebulous Fibro causing me the problem! Not knowing one way or another or rather not being willing to accept and suspecting a mis-diagnosis has led to me feeling rather mentally run down.
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arthole
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Hi.
If you are so worried please go back to your Gp and explain how poorly you are. He should refer you to a heptologist. Please take care Lynne
Hi and thanks for your comment. I keep going back and they refuse to send me to a liver specialist. I paid close to £500 for a Fibroscan. Firstly they thought I had some kind of cancer as I had so many symptoms. I have learnt that liver disease can cause joint pain but all my recent liver check ups have been clear, even fatty liver so I am confused. This has been going on now for 3 years.
The only treatment for anything potentially alcohol related is complete cessation of all booze. Rules for NAFLD also stand. With relation to the fibromyalgia diagnosis do you know if they tested for auto immune hepatitis - symptoms of which can be similar.
Thanks for your comment. They tested for various forms of Hep and I was clear. I am aware that the treatment might be complete cessation of alcohol, however I would quite like to have an accurate diagnosis first. The problem seems to persists whether I drink or not.
The viral hepatitis's are completely different than auto-immune hepatitis and you've gotten a diagnosis of one auto-immune condition with the fibromyalgia. Often when you have an over active immune system then it is very common to have more than one auto immune illness.
If you have ongoing elevations of ALT, AST plus symptoms you need to be investigated for AIH. Blood tests alone can't diagnose AIH - it is often a jigsaw puzzle of tests (often including a liver biopsy to look at the liver on a cellular level) plus a positive response to meds (starting with prednisolone or another steroid to reduce liver inflammation levels).
You say you have no fibrosis based on fibroscan score so that is good plus no other out of sinc bloods. However you did initially state that the under the ribs pain gets worse if you drink therefore in that instance the drink is most likely the cause of your issues at that time.
Have a read at the BLT page about Auto Immune Hepatitis and I think you'll find that a lot of the symptoms you describe co-incide with those of AIH and if it hasn't properly been tested for then it might be worth pushing. britishlivertrust.org.uk/in...
All that aside, if you fear you have alcohol related issues as well then leave the alcohol alone - when you drink whilst also having a stressed liver it is like throwing petrol on a smouldering bonfire. No amount of alcohol is a safe level.
Makes some sense. I will ask my doctor about this. I feel like I am going around in circles at the moment. I have stopped drinking on a daily basis but find social situations difficult without a glass in my hand. I went 6 months without drink but the pain remained the same. Thanks for your input. Fibromyalgia is a very confusing condition.
Plus, it takes longer than six months abstinence to undo ten years of liver damage!
But you've got to start somewhere.
Your being in relatively good shape is to your advantage, but drinking and smoking, if you also smoke, are habits that strain your organs and lead to disease.
Some sense as in if that's what I have. I posted this as I am struggling to get a diagnosis. I obviously know that drinking to access is not a good idea.
Whatever you have or don't have it's true to say that drinking any alcohol at all is not GOOD for anybody especially anyone with autoimmune issues which render our body more reactive than for those without autoimmune issues.
From what you have said, if social anxiety causes you to drink alcohol in company then getting help to be rid of that may be a way forward for you.
From what you haven't said, you don't know if you are addicted to alcohol and don't want to find out yet.
It takes some people 10 years to get a diagnosis of some conditions because they are difficult to diagnose.
If your liver is stiffer than a fibroscan says, (fibroscan isn't a reliable predictor of damage in the low numbers e.g 4.3) you may reach a stage of irreversible cirrhosis if you continue to drink alcohol. Maybe you aren't ready to believe it yet. I hope you do so before it is too late.
There's an army of people here who will support you through difficult times of not drinking, but not one of us will tell you to keep on doing what you are doing.
I have fibromyalgia. It makes me ache all over and touch makes me wince. There are very few medications available, such as Lyrica, but it can help. I also have acid reflux w/mild gastritis, due to a hiatal hernia! This can be very painful, and l imagine drinking wine could aggravate things. Anything with tomato sauce or citrus aggravates mine.
Being told you have NAFLD is a serious diagnosis, this means you are predisposed to potential alcoholic hepatitis and cirrhosis. Try giving up alcohol, if it resolves your symptoms, you need to quit drinking altogether. Your liver has been damaged by poor diet, alcohol and/or stress and the only way to stave off disease is going to be clean eating, abstinence and perhaps, meditation. 😏❤️
I think the NAFLD was incorrect and it was Fatty liver from drinking. I have addressed this and the last check up gave me the all clear on this issue so I don't get why the pain persists and am wondering if it is the gastritus not my liver. Getting the medical profession to listen to what you are saying is a chore. They tell you you have a condition and then send you packing without giving any advice about how to deal with it let alone what it actually means! I was told from one of the scans I have Mesentery Paniculitus without any guidance whatsoever or follow up which leads you to google it and reveal a horror show. Then they say stop looking at google!!
Or at the very least, drinking wine doesn't seem to help (gastritis).
I do understand you not wanting to stick out like a sore thumb at social functions. I feel the same awkwardness, and don't have the luxury of old friends who are supportive either.
Also, there are alternative ways to relax at home, warm baths by candlelight being ideal lol, but there is lots more room for experimentation!
If you must google, use the nhs site and the livertrust. The best source of info it to keep putting the questions to the medics. Its no good them giving you a diagnosis and you not asking them for management advice or treatments .... a) they don't always have time.... b) they will assume you aren't interested or already know the answers because every body googles !
So when you see your doc, keep asking the questions. Make an appointment and between now and then jot your concerns on a notepad and take it with you. Its important to have a good doctor patient relationship to get the best care and results
A daily bottle of red wine over 10 years is a vast amount of alcohol and whether it be the cause of your symptoms or not, it will definately be adding to your discomfort and will be causing more damage to your liver. I certainly would not be waiting for a diagnosis before giving up the booze, it is vital you stop drinking now and adopt a much healthier diet and lifestyle to ensure you give your liver the best chance you can to recover. If you are likely to find it hard to give up alcohol it may be you already have an addiction problem which must be discussed and addressed with your doctor. No good can ever come from drinking on a daily basis.
I wish you well, take care of yourself and please look after your liver.
Laura
Yes, I agree with what everyone has said. Please abstain from alcohol. You could also show your GP this forum. Please take care of yourself Lynne
Hi,
Welcome. You have had some brilliantly supportive replies here. If you do wish to have chat, our nurse led helpline is open Monday to Friday on 0800 652 7330 10am to 14.45
Warm wishes
Trust1
I'm right there with you! I've tried multiple times to explain that my pain goes when I stop drinking, and returns when in do. My whole body aches most days but the rib pain only with drink. I've lost count of how many gp's I've seen about it...I think I'm on 8 now. Still no answers. I hope you get to the bottom of it.
That's because general practice doctors are not as familiar as liver specialists are with the subtleties of liver disease. It is such a common problem that many of us here have had it, the inflammation manifests as rib pain, referred from the swollen liver and spleen. I'm not saying you're going to love being Polly Purebred, it stinks. But the pain will resolve in time with abstinence.
Maybe, maybe not to Bootandall's comment. I have been to see a liver specialist and he said there is categorically nothing wrong with me other than Fibromyalgia so go figure. I am on here and it's just as confusing in some ways with multiple voices. Someone here is even saying that FibroScan is unreliable and that I could still have Cirrhosis with a reading of 4.3 and a next to no steatosis reading. This is not a criticism of anybody here just that telling someone this seems potentially irresponsible. I already know that I am an alcoholic and I presumed that was a given when I said how much I used to drink and I need to quit fully. My original question however was about diagnosis as I am worried I have alcoholic Hepatitis, however it may be severe gastritis which is not quite as life threatening.
I've never heard of fibroscan giving a false low, fibroscan commonly does give a false high reading - we've had members here who have been told they have cirrhosis based on fibroscan but it has turned out to be a false high as fibroscan can give higher than accurate readings particularly where liver inflammation is present. Highly, highly unlikely to have cirrhosis based on a 4.3 reading.
Obviously I am not a doctor, but it seems like a good bet you have some inflammation exacerbated by your drinking. I'm not sure exactly what you are asking, but l can tell you that gastritis can be due to excessive drinking, but it is only a symptom, not really a diagnosis. There is always something else causing it. Does that make sense to you?
Alcoholic hepatitis is a continuation along that spectrum.
The liver takes a huge amount of abuse before it starts to lose it's ability to function. Once it starts to lose its functional capacity, you can help stop it from deteriorating further by eliminating exposure to toxins, like alcohol. Or you can eliminate your exposure to alcohol before the liver actually starts to lose its functional capacity, which it sounds as though that is where you are at now, with the gastritis.
I know this wasn't something you did purposely, and wish you all the best.
Thanks for your input, The liver specialist has said that there is nothing wrong with my liver and the pain is due to my diagnosis of Fibromyalgia even tho, He took a blood sample which in this instance was very normal a fibroscan of 4.3 Kpa and a Cap reading of 237 which would indicate very mild steatosis. I have had skewed LFT's in the past but mostly high ALT (In the 60's and 80's) with slightly raised AST.
Fibromyalgia is a catchall for all kinds of ailments and misdiagnosis these days so I worry that he has got it wrong I suppose. The pain can be quite debilitating at times and is located around my liver and I also get nausea so it seems very specific to me. It stops me sleeping especially if I have had a drink. Obviously I just want to know if it's Hep due to alcohol consumption, Fibromyalgia or plain old Gastritus.
Any which way I know I need to (and have more or less) stop drinking. In short I would like a biopsy to rule out Hep which would help with my anxiety.
Hepatitis just means liver inflammation & would be reflected in high liver inflammation readings. Alcohol related hepatitis can only be halted by cessation of alcohol. Getting a label of alcohol related liver disease can be a hindrance (insurance etc) so it's best that you leave it as NAFLD. You fibroscan is normal as regards liver damage, the fatty change needs to be addressed and not ignored - same way whether it's alcohol related or not and the booze needs to go or further down the line you'll more than likely be looking at fibrosis and full on cirrhosis.
The British Liver Trust has a page about Alcohol and liver disease and also one about NAFLD and you might want to take a look at both.
The fatty liver was much worse. I have been addressing this issue by cutting down drastically on alcohol and changing my diet. Hence the relatively low CAP score.
Trying to get to the bottom a this arthole.
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Hi ... Sorry if this is unconventional .. i cant see your age and race .. but ahs anyone looked at your IRON levels aka Haemochromatosis, being quite common amongst those of Nth European decent and often presents in middle age with pain and liver issues .. just a thought as some countries are all over this issue and others it is rare and not all doctors will test for this.
You mean hemochromatosis? More or less normal levels in last tests. Thanks for the suggestion. Might get them re-checked but haven't seen anyone since the beginning of Covid.
How are you feeling now arthole? I am just curious as having same symptoms and no diagnosis along with unhelpful gp’s unfortunately, Aldo worried about hep,Thanks, Debs
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Recent diagnosis of Hep C
Fibrosis diagnosis 
GGT readings high
Too much worry?
Cirrhosis or fatty liver help please
