Can Hepatic encephalopathy happen without cirrhosis but just elevated liver tests?
Hepatic encephalopathy: Can Hepatic... - British Liver Trust
Hepatic encephalopathy
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LFTmystery
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What makes you think you have Hepatic Encephalopathy? It usually is associated with toxin build up in late stage liver disease.
From your tests it looks like at most you have a moderate degree of fatty liver (your 240 CAP score indicates this) & elevations of ALT/GGT which are also in keeping with fatty liver.
Dizziness alone isn't enough to suspect HE.
Katie
Hi Katie, thanks for your response. I feel very dizzy and like the room is spinning. I have been doing wierd things like forgetting to take the handbrake off or other forgetful things. My urea is also always low. Does this mean my ammonia may be high. I suppose I'm just very worried I feel so out of it.
You need to get this checked out by your doctor, they need to run the ammonia tests etc. If you are suffering dizzy spells or suspect you have HE then you shouldn't be driving or attemptying to drive - dizziness is a notifiable condition to DVLA gov.uk/dizziness-and-driving
I've been to the doctor but they didn't order an ammonia test. They ordered lots of others. Maybe I should go back.
Ammonia test usually has to be done at hospital as it needs to go straight to the lab. But, you absolutely needs to discuss these symptoms with your doctor.
Yes I have. My family doc thinks maybe inner ear infection. I'm concerned she dudbt think of ammonia
My Dad (with no liver disease) recently had a funny turn whilst driving - like a vertigo type turn - he was convinced he'd turned his vehicle over it was so bad. In his case he had a viral infection of the inner ear so your doctor is probably correct.
With no cirrhosis it would be unlikely to be HE.
Thanks Katie. You are really helpful explaining things 😊
I also get stabbing pains in the URQ and shoulder. These come and go but have been around for about 2 years.
While I agree you need to get it looked at… this falls very much into ‘hear hooves think horses not zebras’
Not everyone with severe liver damage even gets HE, so I doubt it would be that without some other obvious signs.
in reply to Ubwa
I love that turn of phrase and am now using it at every opportunity Ubwa!!
To fly in the face of conventional wisdom I’d say yes it could be possible.
I have been having intermittent symptoms since Oct 2011. Itching, crushing pain in the relevant area, hypoglycaemia (which would be caused by the Liver’s inability to store glycogen). Also strange dizzy spells like you which I very very strongly suspect would be HE.
I was also a very heavy binge drinker for 20 years prior to all this.
I’ve had an enlarged Liver observed on CT in 2012. That’s it, all bloods over the last 10 years have been in range. Obviously I don’t drink anymore! Docs won’t do a biopsy unless the bloods are out of whack.
So yes it could be imho, discuss with the GP. Be prepared that they may think you are a nutter & refer you for CBT like they did with me.
I hope I don’t have the last laugh tbh & they still think I’m a nutter in another 20 years time 
that's my experience also Avux.
“hypoglycaemia” is more than likely the cause of your light headedness. And while it can be caused by liver disease, it’s usually only caused by severe disease like cirrhosis. If your liver was so damaged you can’t store glycogen, it would have shown in bloods. Likewise, If the itching is caused by liver related issues it’s nothing to do with he, it’s caused by elevated bilirubin which will absolutely show itself in blood and even Basic physical tests. Let’s not forget too, a lot of what you have described can be explained by heavy drinking, there is very little not impacted in the body by drinking. It is after all, a poison. Again, hooves, horses, zebra etc…
how’s your sleep LFTmystery ?
yes concur with that-I had symptoms very akin to HE which I reversed with diet, abstinence and exercise. Liver stress causes all kinds of stuff, anxiety & the like
How would you also explain my noticeably decreased tolerance of paint fumes etc over the last decade? Also, the feelings of hypoglycaemia are distinct & noticeably different from those that are probably HE. I know the rest, like I’ve said, these symptoms are intermittent & not constant. Btw when I say heavy drinking, I mean HEAVY drinking. In the absence of any credible alternative diagnosis & the CT I’m going with both my instincts & my knowledge of my own personal history.
my experience also although that has improved with me-I think an enlarged liver through alcohol can cause that
Absolutely, I’m open to it being any of fibrosis/hepatitis/cirrhosis etc. Point is I’m almost 100% nailed on that its liver injury through 20 years serious alcohol abuse. Frustrating & relieving in equal measure that it doesn’t show in bloods & hasn’t done in over a decade despite ongoing symptoms. But hey, one has to be positive & keep on keeping on doing the right things belatedly doesn’t one until if/when things really start going obviously south 😉
good luck with it-having not seen a doctor for nearly 2 years due to covid-time to get my own bloods done
No need for doctors then Relax, this is a discussion forum, I wasn't attacking you merely offering a viewpoint from someone that has suffered a lot more severely from the effects than alcohol than you have. And I mean that as a very good thing. By "HEAVY drinking" , how much we talking? How do you know the difference between diabetes sugar issues and HE? So far the only symptom you have mentioned that may indicate HE is light headedness. Why you do think intolerance to fumes = HE? What did the doctors say about your enlarged liver? If it was hepatitis you should have inflammation markers. Correlation does not imply causation.
Do you know the mechanism of action that causes HE? If you had HE, it means your liver is not filtering blood, due to it being severely scarred. This will mean you will almost certainly have splenomegaly and portal hypertension too. With this comes anema, spur cells, low platelets, high blood pressure. But thats all ok right? Was your spleen and portal veins ok on the CT?
HE is a serious issue and has clear pathological pathways, so sorry if I don't agree it's something you can pick up and throw around like getting a cold. Unless you have been diagnosed with HE (and I have never heard of someone "just having HE") , I recommend trying to find out what is actually wrong with you.
Sorry if my reply was a tad tetchy. When you voice repeated concerns over a decade & get no change it can make you a little like that in the face of naysayers. Nothing personal
If I am ingesting toxins, in this case, paint fumes, that ordinarily would have caused lightheadedness etc for a brief period but now they affect you for a noticeably longer period than previously why would you think that’s the case? My simple conclusion is the damaged Liver is unable to process those toxins as quickly as it previously could hence the prolonged effects. FYI, I am not saying paint fumes = an episode of HE.
Yeah, I know where you are coming from with doctors not listening, been there too for another issue...and current one for that matter. I "fired" my local NHS trust for my care and went private and to the trust next door cause I got tired of their box shaped approach to treatment i clearly wasn't fitting into.
The fumes is a funny one, as only a small amount of it will actually be processed by your liver. Its likely your drinking has made it more sensitive to things. How much were you drinking? Bottle, half, 2? I'll go first I would drink at least 70cl up to 3l a day. Reason I ask is it damages more than just your lover, it may have damaged your mucosal membranes etc. I get affected by things like IPA on my skin, but fumes dont bother me any more than before. But i clearly had the chemistry to show what was going on inside.
What did they say about your enlarged liver? At the very least I would expect them to refer you to a consultant to look a bit more.
Drinking? Bottle of sprits in an evening, on the very odd occasion even more than that. A full box of wine. That type of thing. Not every night, but 2/3/4 nights a week.
‘Enlarged Liver’ on CT was observed with no focal lesion. My first symptoms were pain in the spleen area, followed closely by my first hypoglycaemic episodes. Had my first episode of suspected HE about 18 months later, 12 months after the CT.
General concensus since then has been to run bloods occasionally when I’m having symptoms.
A gastro I subsequently saw actually called out the ‘Enlarged Liver’ observation as bulls**t, but similarly offered no alternative explanations.
I’ve had 3 private fibroscans all of which showed a low kpa, but that doesn’t necessarily rule out things, I have since read.
What can you do? No alcohol in over 10 years, eat right with exercise & hope things cling on by their fingernails pretty much.
" pain in the spleen area"
Ok that also should have warranted further examination too, I used to get really sharp pains when I had PH.
Seems your experience with Gastros somewhat mirrors mine, try see if you can get a Hepatologist rather than a bog standard gastro. If in the UK, try get to see a doctor attached to a transplant trust - they seem to be of a different caliber.
Just be careful you aren't Ahab chasing your whale, it may not be your liver, but I too would not accept what you have been told at face value.
Regarding the spleen pain, again that’s intermittent, I’ve noticed since it flared up originally it subsequently flares up during infections, which would make sense.
I actually went to a Hepatologist privately 18 months after it all started for a consultation, just after the ‘HE’ first episode. He had a good feel of the upper right quadrant & basically just said we can only diagnose what we can see, live as healthily as you can, que sera sera type of thing. Also said enlarged Spleen is comparatively rare even in advanced Liver disease.
Yeah, am conscious of chasing down a false diagnosis of course & happy to be proven wrong (as long as it’s not even worse lol) but too many symptoms seem to add up, coupled with the history.
I have the same situation - persistent HE and nodular regenerative hyperplasia (NRH) of the liver according to the results of the biopsy. HE exclusively associated with cirrhosis is a big medical myth!
interesting post-thanks-trust it's not too debilitating!
In my case persistent HE is very debilitating and probably irreversible...
very sorry to hear that Fibro
Yes it is definitely possible. I have Nodular Regenerative Hyperplasia and many liver symptoms but it does not show particularly in biochemistry or scans.
I think we need to establish that NRH and cirrhosis both in their own way damage the structure of the liver quite significantly and in doing so both cause issues with blood flow through the liver leading to symptoms associated with portal hypertension and also the work the liver does in de-toxifying blood.
NRH is still a very rare condition and whilst I totally acknowledge that two of you here do have it and symptoms associated with it - NRH does mean that you have massive change to your liver structure and functions.
When a poster has neither cirrhosis nor NRH then it should be a case of saying that HE is more associated with advanced liver change rather than saying yes you can have HE without cirrhosis - whilst yes you don't have cirrhosis you do (with the NRH) have significant structural and functional change in the liver. It is unlikely that someone with say a mild bit of fatty liver would have HE symptoms & I think it's important for us to note that.
It's also important to note that NRH can only be established with a biopsy. It's impossible to know everything. Knowledge always changes as new data becomes available. Rare and rarely diagnosed are not the same thing.
In addition, there is a state of latent or minimal HE that can be diagnosed only and exclusively by psychometric testing. This condition may appear in the pre-cirrhotic stage (fibrosis stage) according to the latest published data.
Katie, not only does NRH cause portal hypertension it also causes liver failure. A number of hepatoligists have confirmed this across the globe.
Whilst I appreciate you are knowledgeable in matters regarding your husbands condition I am sure that you will also appreciate that someone like myself with an unusual diagnosis has researched extensively and have spoken to many Professors, Hepatoligists and gastroenterologists across the world.It is also important to understand you are only aware of 2 of us having this condition...this does not mean there are not more people with this condition on this forum. This disorder is not as unusual as you may think. You can only obtain a diagnosis through biopsy which can be difficult to achieve.
Noone is saying LFTmystery definitely has HE, simply that it is certainly possible to have it without overt cirrhosis.
I think Katie is saying that I'm unlikely to have HE with test results that show mild fatty liver and no fibrosis. My Heptologist isn't very concerned about my liver either but I haven't asked him this question. My guess is he will say something similar - it's unlikely HE.
lft your symptoms sound very similare to mine, and these slowly started to appear ( or i started to notice them ) only once i had stopped drinking so now i have a few brain related issues and i thought i had HE but i have been told no and i am waiting to see a consultant about this but i hope you get to the bottom of your issue but the only good thing i was told was at least you have stopped drinking because if you had not , where would you be now ?
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