Hi, is it possible to experience Hepatic Encephalopathy with F1 Fibrosis? Here's my backstory..
I'm ashamed to admit I was a daily drinker for approx 20 years (I'm now in my mid forties) as I used it to self-medicate to help with anxiety (terrible idea I know). I must have been averaging around 80 units a week for the first 10 years, and around 50 units a week for the next 10. Despite this I've held a full time technically demanding job.
About 2 years ago I developed itching on my forearms and shortly after I noticed my urine was bright orange and had terrible nausea. I immediately quit drinking and haven't touched a drop since. The nausea subsided but I then developed muscle twitching and for a period of time my limbs would randomly jerk. Since then my main ongoing symptoms has been intense brain fog, poor short term memory, muscle twitching and occasional bouts of itching. It's the cognitive issues that worry me the most - at times I can barely string a thought together and my speech can be slurred. I read up about Hepatic Encephalopathy and thought that must be it, as the brain fog immediately clears up after a bowel movement. I was convinced I had Cirrhosis and Hepatic Encephalopathy. I can't see what else it could be. I've also experience other symptoms during the past two years:
- Pale nails, no visible lanula on any fingers/thumbs, thin red strip on top of nails
- Very cold hands/feet
- Easily bruising
- Poor vision, feels out of focus particularly when looking at computer screen
- Constant headaches
- Sometimes a feeling of pressure in my head
- Slow movement, hands feel stiff.
- Stool colour is brown tinged with yellow
- Heavy feeling in the liver area
I haven't experienced any jaundice, ascites, bleeding, no major fatigue
Last month I eventually plucked up the courage to see a hepatologist who booked me in for blood tests, Ultrasound & Fibroscan. I was 100% expecting a diagnosis of Cirrhosis but the Ultrasound was fairly unremarkable (though there was mention of fatty liver and coarse echotexture) and the Fibroscan KPA reading was just below 7.0 which is F1 Fibrosis. Blood tests were normal. Consequently the hepatologist doesn't think my symptoms are HE related. He's highly respected in his field so I'm hoping he's got it right but I'm not convinced due to my symptoms.
Has anyone with risk factors for liver disease experienced symptoms of HE with a relatively low Fibroscan reading? If it isn't HE then what else could it be?
Appreciate any feedback.
Edit: Forgot to mention, during my initial examination the hepatologist observed some loss of muscle mass but no other stigmata for liver disease.
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Hi, Yes, there may well be HE even without fibrosis. Have you checked ammonia and b12 in your blood? Do you have a faecal sweet taste or odor in your mouth?
Hi, thanks for replying. I had a full set of blood tests including Ammonia. My hepatologist didn't mention anything was out of range.
Haven't noticed any such taste in my mouth though I've occasionally noticed a sweet smell in my bedroom in the morning if I leave and re-enter my room. Not sure if it's ammonia or something else. It definitely smells sweet and almost chemical-like.
I wasn't aware HE could occur without fibrosis. I noticed from your posts that you have NCPH, hope you're OK. It's got me wondering whether I also have it.
Normal ammonia levels are no exception for HE. HE is diagnosed by symptoms and trial treatment results in most cases. As you understand, it is sometimes very difficult to prove NCPH without liver biopsy, and the staining of histological samples with reticulin stain and a well-trained pathologist additional conditions for a correct diagnosis.
Hi, I'm in the same position with episodes of jerks and muscle twitching which have got worse since stopping drinking, and nothing showing up on tests so far.
There are some rarer vascular liver diseases like nodular regenerative hyperplasia, which can lead to non-cirrhotic portal hypertension. These won't show up on the normal tests because they don't create scarring (as I understand it).
I'm not suggesting that's the case for you & I'm not medically trained etc., so please don't let me worry you.
Do you have any other symptoms at all, and how are your platelets and GGT? Is the jerking worse when you're going to sleep?
Hi from a fellow nerd, though I don't feel quite so nerdy anymore thanks to the brain fog as nerds are supposed to be brainy!
My recent blood tests (including platelets and GGT) were all normal I assume, otherwise my hepatologist would have raised it in the follow up. I haven't requested the individual results as I'd only end up worrying if anything was remotely out of range.
The jerking was worse during the day. If I remember correctly, it started 3 or 4 months after I quit drinking and only lasted a few months. The muscle twitching on the other hand has been ongoing. Perhaps the jerking was due to alcohol withdrawal, I'm not sure.
I read your posts and am sorry to hear that you've been so stressed. Hope we both manage to find answers to these symptoms.
Any advice or information given by a hepatologist I would trust 100%. These are experts in the field of liver disease and should be respected, and their knowledge trusted., especially if this fella is so highly respected.
See if your GP will agree to a NH3 blood test. But this maybe have to be taken up at the hospital where the tests are to be completed. As all samples for ammonia must be sent on ice immediately to the laboratory . This NHS link may help: gloshospitals.nhs.uk/our-se...
You could say to your GP that although you trust the advice of your consultant, you would feel better if you had peace or mind, just to be sure.
Hi Richard, appreciate your response. I had an ammonia test and my hepatologist didn't raise any concerns so I assume the results were in range, though he mentioned before I took the test that the result wouldn't be conclusive as it can be in-range even with HE.
My biggest worry is that my brain fog immediately clears up after a bowel movement. The difference before and after is like the difference between night and day. That's why I still suspect I have HE. I'm not aware of any other brain fog conditions that can clear up with a trip to the loo. I sure hope I'm wrong.
I'm currently taking lactulose and my main reason for seeing the hepatologist was that I assumed I had Cirrhosis and expected to be prescribed Rifaximin, but as the scans didn't reveal Cirrhosis I didn't even ask him about Rifaximin. I don't want the brain fog to get any worse as it'll affect my job.
Hi. You probably are experiencing some pretty intense anxiety. The Queen mum drank around 70 units a week and didn't die from booze.
You have had a good check up and the Liver Dr is happy you aren't about to die. I was very sick some years back with Gastritis and experience some of the things you describe, took me 18 months to feel better. Booze can affect your whole digestive tract.
1. A liver doctor says you are "good to go". That is usually an extremely good sign.
2. Brown fecal output is exactly what you want. Can't comment on the rest.
3. Numbers are fine.
4. What I would do is in most cases say to people - "see a doctor" but you already DID! And he says you are fine. Stop drinking for a year and this may all go away or greatly reduce.
As posters above me have written, this could be something else like gastritis. Or it could be two things that you think are one but are actually not (gastritis causing tummy issues and a vitamin deficiency causing other things - just to make up an example).
Please note I am NOT a doctor! I have no medical training! But for your own sake stop drinking for a year and see what happens. I think you'll be fine.
Hi thereIf I were you I would push for a biopsy. My scans were all fine buy I knew there was something wrong with my liver I have symptoms similar to yours ( but worse).
When I had the biopsy it showed Nodular Regenerative Hyperplasia. Unfortunately doctors are not very well informed of this disorder though. It also shows relatively normal blood tests.....
Hi, yes I may eventually have to push for a biopsy if there's no improvement. I'm sorry to hear you have NRH. Hope you manage to get your symptoms under control.
Have you been tested for diabetes? My father was a poorly controlled diabetic. Sometimes there was a sweet smell around him and you could tell when he felt “off”. You may be surprised how blood sugar levels can impact a person.
I had wondered whether my symptoms might be related to diabetes but my recent blood tests included glucose and there was no mention of any abnormalities. I have noticed that I can sometimes feel quite faint and week after eating sugary food so maybe there is something going on. Thanks for the suggestion.
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