Peter

[PastaLover53]

Hi all. My names Peter. If like to share my story. I went through a period of heavy alcohol abuse. Thankfully I stopped in November 2023. But it has left me like a vacant shell. I have a distended abdomen. Pain to the right hand side. Severe mental confusion. No appetite. Chronic fatigue. Haven't been diagnosed yet still awaiting more tests. Still very unwell. Still very concerned regarding my health. Feel so lonely .

[Sunnyskies33]

Hi Peter. Welcome. If you are in the UK you might benefit from calling the nurse hotline at British Liver Trust (or read the information they have here) to get started on healthy liver living while awaiting your tests. If you have fatty liver a Mediterranean diet is very helpful...lots of veggies and fruit, fish, olive oil, coffee, lentils, unrefined grains like oats, stoneground wheat, some chicken breast. If you are able in your current condition, a 30 minute walk a day would be helpful too. This site is very helpful...I am new here too and have learned a lot from the people here.

[PastaLover53 in reply to Sunnyskies33]

Help there. Thank you for your message. Am able to do the walks but don't have a great appetite at the moment. Regarding my physical health I have a fibro scan arranged for tomorrow. Hopefully I will start getting answers so I can hopefully move on with my life. Nurse hotline can't help as I haven't received a diagnosis as yet.

[Fibro2021]

Hi Peter, thanks for sharing your story – that’s a big step. It sounds like you’re going through a really tough time and your anxiety is understandable. It’s good that you’ve stopped drinking – that’s a big achievement, even if it feels like nothing has changed right now. Your symptoms, such as confusion, chronic fatigue, and pain, could be related to various causes, including the impact of alcohol on your body. If you haven’t had your blood ammonia levels checked yet, it might be worth discussing this with your doctor. Sometimes elevated ammonia levels can cause symptoms similar to yours. Of course, this should only be done with your doctor’s approval, but this test might help better understand your condition.

Take care of yourself

[PastaLover53 in reply to Fibro2021]

I Have had countless tests undertaken namely Colonoscopy, Full body CT Scan, Endoscopy, ultrasound which haven't shown Liver damage. Yet I am still experiencing all thease symptoms. I have a Fibro Scan booked for tomorrow which I hope will give me a better indication into the state of my liver. I have also been asked to take a SIBO Test which could possibly explain the distended abdomen? But I don't buy that. I have begged my consultant to undertake a Liver biopsy but he is reluctant to arrange this as up until now there is no evidence of liver damage. So while all this still goes on I'm am still suffering with no diagnosis and no treatment.

[PastaLover53 in reply to PastaLover53]

I am adamant that I have liver damage I really am. All my symptoms lead to this. My concern is my consultants reluctance to approve a Liver Biopsy. Given that I'm paying privately surely it's my choice. I am running out of options. Where do I go from here?

[Fibro2021 in reply to PastaLover53]

Fibroscan cannot be considered a universal diagnostic tool. Not all liver problems are related to fibrosis or cirrhosis, for which a fibroscan can be informative. Unfortunately, it is absolutely uninformative regarding vascular liver diseases, such as NRH/NCPH (as my case) The ammonia test is equally important (like LFT) for assessing liver function, since detoxification of ammonia in the body is one of the most important functions of the liver.

[PastaLover53 in reply to Fibro2021]

Can it detect fibrosis or cirrhosis and if so the extent of liver damage?

[Fibro2021 in reply to PastaLover53]

Do you mean fibroscan? Yes, it can be detected to detect cirrhosis or fibrosis. Regarding NRH and other vascular diseases of the liver - no, fibroscan is not informative since liver stiffness practically does not change in these conditions.

[Smegmer in reply to PastaLover53]

A Fibroscan is good for Alcoholic Liver damage, but the readings can overstate the damage if there is any inflammation present. The tests you have had so far should rule out Cirrhosis. A biopsy isn't without risk, and that's why they are refusing to perform it. They would expect it to be negative, considering all the evidence so far, and feel it won't gain them any clinical knowledge.

How much and how long were you drinking for?

[Anthonysmate]

Although a Fibroscan is not a definitive tool, it gives a very good guide to whether you have liver damage. Inflammation can bump the reading up somewhat, I had a reading of 19 on my first scan, and they looked for stigmatic signs of liver disease but there wasn't any except symptoms similar to yours . They immediately offered me biopsy which showed fibrosis 3/4 with bridging, very close to cirrhosis, "Doing a good job, but not quite there yet" said my consultant. Went onto six month bloods and reviews etc, now on yearly and fibro down to 4 reading, kept to diet no grog for two years now, and I've discovered excersize which somedays I wish I hadn't ☺ Good luck, keep in touch, they will at least have an idea on the way forward when they have the fibro results..

[Bensfriend]

Sorry to hear of your condition but glad you have stopped drinking. I have similar symptoms and situation. I had all the test you had showed nothing including a fibromyalgia scan ( normal) . Have you had an endoscopic ultrasound? My symptoms come from scarring on my pancreas . I’m on replacement enzymes now. Symptoms get worse when it flares. Maybe something to look into . Wishing you the best

[Bensfriend in reply to Bensfriend]

Fibrosis Scan ( spell check) 🤭