HE / Lactulose regimens

Hi currently experiencing what I think is yet another episode of HE. Brain fog coupled with sleep disturbance, dehydration and loose stools. Struggle to drive at times due to the sensory alteration. I've still no diagnosis of anything after over four years of symptoms, only thing noted was an enlarged Liver on a CT scan in early 2012, and even that has been questioned as being subjective. All bloods in range since, all other scans normal. Yet, in addition to the "HE" I've had/got itchy legs, low blood sugar feelings (which never run concurrently with the "HE", always one or the other), pain in spleen area after colds and/or vigourous cardio vascular exercise....occassional pain in Liver area. I was also a HEAVY binge drinker for 20+ years, though I've been dry for over four years now. So, enough reason to believe its serious & very, very much likely to be Liver related IMO. Medics dont really want to know until if/when the bloods go awry. I'm currently getting bloods checked every 12 months, on that basis next I'm next due in April 2016. Not a nice position to be in really.

So, Im currently trying Lactulose indpendently as an OTC medication to see what it does as its a relatively benign medication. Just asking for people out there suffering/who have suffered with HE how do/did you take it as I know it can cause nausea etc if taken neat and in what quanitites did you have to take Lactulose for the fog to clear? Did it clear totally or did the Lactulose just take the edge off the HE? Do/did you take it constantly or do/did your episodes subside etc?

Please reply with your experiences

Muchas gracias :)

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  • As far as I know the lactulose itself doesn't clear the brain fog. I could be wrong but I think it works by keeping you regular so that there is no build up of toxins.

    I can't remember how much I used to take but I would take more or less depending on how regular I was.

  • I think that based on what you are saying here.... you need to go to your GP as SOON as possible and get the LFT tests done without waiting until next April. This is even and ON TOP of if you are being followed by a consulatant every year.

    You have these symptoms they need to be checked sooner rather than later. And maybe another scan as soon as possible as you need to do all you can to stop your liver tipping over into decompensated and it sounds like it may be at the edge...........

    If that GP refuses make another appointment with another one ( same surgery)

    Hope this helps

    The Lactulose may help to control the symptoms but please check your liver to see if anything else can be done at this point in time .

  • Oh and another thing, go careful about driving. I had to give up when I got ill, I think you'll be in trouble if you have an accident.

  • Oh bless you xxx your quite fab that you realise your brains not right 😘😘😘 Hubby's was there all the time and was convinced it wasn't him having a nutty time it was me and anyone else around him πŸ˜‚πŸ˜‚πŸ˜‚ with ref to the lactulose - robs dose was !!!! 30mls three times a day 😝😝 the aim was to have 3-4 poos a day πŸ˜…πŸ˜… you mentioned diarrhoea ??? The problem with HE is the build up of toxins - which are often not expelled from the body due to constipation - so the lactulose is taken because the toxins bind to the lactulose and get taken out with faeces - if you are already having diarrhoea I wouldn't recommend lactulose on top 😩😩 it could be very nasty for you and would also involve you making sure you drank plenty and replaced salts/sugars etc as you may end up with problems with your electrolytes - which could make you feel worse 😘😘😘 Do NOT drive if your feeling like this xxxx if you are passing less than 3-4 soft formed stools per day then try 10ml 2 times a day then if ok go up to 3 times a day - you can add 5-10ml to each dose until you require the desired effect xxx definitely get to GP though and start going through the 'diagnosis' so that you can get treated properly instead of just otc - they have some fab meds for HE now so it wouldn't be nowhere near as bad as it could have been several years ago ❀️❀️ good luck xxxx

  • Hi Avuxx99, I know that this has been going on for sometime now and that you are convinced this is a liver issue despite all tests, scans and consultants etc. saying otherwise.

    I wonder if you have been to the doctor and explained all your symptoms without stressing the liver point and see what diagnosis they can come up with or investigations they can do for you.

    Whilst you may indeed be suffering from brain fog issues this is highly unlikely to be hepatic encephalopathy which is pretty much a side effect of very advanced cirrhosis of the liver. Itching (due to liver disease) tends to be associated with high levels of bilirubin and jaundice and isn't a mild itch - its a clawing your own skin and flesh off itch.

    Brain fog, itching and low blood sugar levels can accompany other illnesses such as thyroid issues, diabetes type 2 and others and I am wondering if you've gotten so hung up on the liver that other things have not properly been investigated.

    I would be tempted to go to the doctor with your symptoms and see what they come up with other than the liver.

    Wishing you the best of luck,

    Katie x

  • If you already have loose stools I'm not sure self medicating with lactulose is a good idea??????????????

  • Agree 100% with Bolly, nothing surer to give you dehydration than going to loo too often and dehydration also causes fuzzy head symptoms.

    Taking laxatives isn't a great idea unless they are absolutely required.

    Katie

  • Couple of very intelligent responses there - you'd be very wise to heed them.

    You do need to get back to your doctor to investigate. You may not be doing yourself any favours by self-diagnosing mainly because you may be drawing attention away from something that is wrong but different from what you think.

    The thing about HE is that it's a symptom of advanced liver disease. Which begs the question if you have liver disease so advanced that the liver doesn't have the capacity to clear toxins from your blood how are all the other tests coming out normal?

    However you should take what's happening seriously and go and ask your GP to get a blood test. If they come back clear though you should discuss other issues with him though that may account for the symptoms - including anxiety. Your not the first person on these forums who's been a heavy drinker and is concerned they have serious liver disease despite clear tests and so - and I'm just putting it forward for you to consider - it may be something related to the causes of alcoholism.

    But you can't have it both ways though - it can't be so serious that you suspect HE but not so serious that you're willing to drive.

    Anyway, best of luck. Hope it's not liver related.

  • Hi thank you all for your replies.

    Yes of course been checked for diabetes, thyroid and so on and as I say bloods all in range.

    No alternative explanations with any credibility from the medics. The usual: "IBS"

    Liver has to be hot favourite given my drinking history and these symptoms.

    Been to the GP scores of times over the last four years, but much less frequently now as to be blunt, I've lost faith. They don't believe the possibility of serious Liver Problems unless bloods say so basically so it's not up for negotiation. The 12 month bloods have been at my request due to continued symptoms that aren't going away. I'm not under a consultant currently, been seen by a couple of gastros and had a private consultation with a Hepatologist.

    Had CT scan, Abdominal Ultrasound, Liver Ultrasound, MRI on spine, Endoscopy, Colonoscopy, four or five complete blood counts, Drugs tried in big doses (proton pump inhibitors) on basically a hunch from the GP. Fibroscan courtesy of the BLT.

    Apparently nothing untoward (apart from that aforementioned "enlarged" Liver on CT).

    So why the symptoms then, coupled with my very heavy drinking history?

    Fed up of it all to put it mildly.

    Way I see it is Lactulose could be an easy & (relatively) safe short term way of deciphering whether I am indeed suffering with HE or not. Obviously will make sure I'm hydrated etc throughout the short term "experiment" & If the head symptoms ease, that would be a pretty good indicator no?

    ...although no one really answered whether Lactulose on it's own makes the HE "brain fog" disappear completely or just lessens the level...? Bit of a grey area?

    Re: driving, maybe I shouldn't be driving if I feel out of it, but according to the medics I'm ok to drive on paper inspite of my repeated voiced concerns. When you have to concentrate very, very hard driving down the same left hand slow lane on the Motorway, you know something isn't right.

    But hey, what do I know. It's all in my head so the Doctors tell me.

  • "So why the symptoms then, coupled with my very heavy drinking history?"

    Yes but on the same basis.....

    What's producing your blood clotting factors then?

    Where are your blood proteins coming from?

    Where is all the depleted bile going?

    etc etc etc.

    You can't expect them to ignore all this...

    Lactulose makes you go to the toilet more on the basis that faecal material lingering in the colon leaks toxins back into the bloodstream. If you have diahorrea this can't be the cause of your HE. Lactulose is not specifically designed to treat HE. It indirectly treats it.

    Very sorry about your predicament - can't add much to what I and others said earlier, but based on what you've said it's a pointless illogical experiment.

    Also talk to your doctor about your fitness to drive.

  • I thought I explained how lactulose works in my earlier reply. Based on some of the things you've said I really don't think you have HE. If your bloods are ok you can't have HE because I believe it's these toxins that would be found in your blood that would be the basis for the HE. However if you're already more than regular you don't even need the lactulose.

    Also HE is quite often more than brain fog. Brain fog can be caused by all mannor of things. Like stress and disturbed sleeping patterns.

  • Whilst in no way a medical professional I have to say that it is highly unlikely that you have a serious liver issue if it isn't showing up on any of the scans you've had and with normal blood results. I'd have to agree with your doctors.

    An enlarged liver is generally a sign of some inflammation of the liver which would co-incide with your heavy drinking pattern at that time or it could just be that you have a large liver. From the outset of my hubby's diagnosis we were told he had a shrunken, shrivelled liver with a dense echo pattern on ultrasound all a conclusive diagnosis of advanced cirrhosis. His scans, blood tests, liver biopsy's have all shown this and with the range of tests you have had it would be practically impossible for cirrhosis to have been missed & HE is a side effect of advanced cirrhosis as are portal hypertension, varices, oedema, ascites - none of which you are displaying.

    Whilst I am not saying that nothing at all is wrong with you, something evidently is still bothering you - it could perhaps be anxiety related which can then create physical symptoms but I do not think that cirrhosis would have been missed. You've certainly had a massive lot of tests and scans - some of which my hubby who has had a diagnosis since 2012 has never had.

    HE is a serious condition resulting from toxins building up in the blood stream and affecting the brain (which you know already) as a result of cirrhosis. These rises in toxins are observed in blood results too. My hubby takes 20ml morning and 20ml night of lactulose to ensure he moves his bowel 3-4 times daily in order to remove toxins from his body but was also put onto Rifaximin during his transplant assessment in 2014 - he still has memory issues, disrupted sleep, fatigue, concentration difficulties and in no way would be safe to drive (he gave that up on diagnosis in 2012 when he knew he was unsafe to drive through the fatigue and concentration difficulties).

    I don't know what else to offer in the way of advice since I can only speak of the experience we've gone through with hubby's tests and treatment.

    Sorry not to be able to help more.

    Katie

  • Hi Katie

    Thanks for your reply. Sorry to hear about your Husbands woes.

    Always thought diagnosis of HE through bloods was somewhat difficult and done more on overt symptoms? I know testing for Ammonia levels is somewhat unreliable.

    Not disputing the fact that Fibroscans etc give an insight into liver stiffness....but HE can also be a symptom in Alcoholic Hepatitis (which would explain an enlarged liver) and not just Cirrhosis.

    ...but of course you would expect Hepatitis to -usually - show up in bloods.

    It's a mystery that's for sure.

  • "HE can also be a symptom in Alcoholic Hepatitis (which would explain an enlarged liver) and not just Cirrhosis. "

    Er.... If you suspect you may have alcoholic hepatitis you need to stop drinking immediately and stay stopped.

    PS - it's not.

  • Not sure by what you mean it's not? If you mean HE isn't/can't be a complication of Alcoholic Hepatitis, you're wrong.

  • Hi,

    HE isn't a symptom of Alcoholic Hepatitis.

    It's a symptom of advanced liver disease - which results from advanced fibrosis (cirrhosis).

    Drinking alcohol causes your liver to become inflamed. That inflammation is called hepatitis and because it results from Alcohol it's called Alcoholic Hepatitis.

    If you stop drinking you stop causing the inflammation of your liver. So no more Alcoholic Hepatitis. IF you continue drinking then the inflammation continues and Alcoholic Hepatitis continues and Hepatic fibrosis develops. As more and more of the liver becomes fibrotic the end result is Liver Cirrhosis.

    So whilst someone with Alcoholic Hepatitis may also suffer from HE if his/her liver has developed cirrhosis, the HE is a symptom of the failure of liver function resulting from the cirrhosis.

    Which is why if your liver is far gone enough to be causing HE then it should be easy to see the other signs of cirrhosis. The same scar tissue that doesn't allow toxins to be cleared is also unable to produce proteins, clotting factors etc etc..

    So if you are concerned you may have Alcoholic Hepatitis you should stop drinking immediately. Your previous scans appear to have ruled out any significant fibrosis.

    Cheers.

  • Hi. Well maybe you should tell Prof. Martin Lombard (google him if you don't know who he is) this then. Because when I explained my symptoms to him in person in April 2013 (after the first bout of suspected HE) he suggested I might have "a little bit of Alcoholic Hepatitis" & just to live as healthily as I can etc hoping the Liver repairs and see what happens.

    Now, if HE was exclusively connected with advanced Cirrhosis, why would somebody as well versed as he have said that?

    Needless to say, 4 years sober, symptoms still happening. Only thing for Alcoholic Hepatitis is no alcohol as you say. An actual diagnosis would be nice though.

  • Not entirely sure what you're saying - and I'm certainly not here for an argument with you - but my replies are only motivated by an attempt to assist. And I REALLY hate typing.

    From a liver perspective you can add acute causes of liver disease to what I was saying above - in the sense that an acute assault on the liver - like an overdose of pills for example can cause such severe hepatitis so quickly (acute) that extensive liver damage and inflammation result - which can result in the common symptoms of advanced liver disease - but in this context it's a distinction without a difference - as massive fibrosis usually results or is about to result.

    As I understand - from a really quick look at your previous posts - no doctor has ever diagnosed you with liver related hepatic encephalopathy or in fact any liver issue. So as I wasn't there I have no idea what Doctor Lombard was telling you or why but as you described your various symptoms then it's entirely possible that they were manifestations of Alcoholic Hepatitis if you were drinking very heavily so his advice not to drink was sound.

    If however you stopped drinking 4 years ago then you no longer have Alcoholic Hepatitis as alcohol is no longer causing inflammation of your liver by virtue of the fact that you aren't ingesting it.

    So as you no longer have Alcoholic Hepatitis you can't have Hepatic Encephalopathy resulting from Alcoholic Hepatitis - even by your argument - which I don't accept (and there's no evidence based on what you've said that you were in a position of experiencing acute liver disease).

    So if you can't have Hepatic Encephalopathy from Alcoholic Hepatitis as the alcohol would definitely have left your liver in a four year time period - from a liver perspective the only other possible cause is Cirrhosis - which is the usual cause - or something completely unrelated to the liver. In your case they appear to have ruled out cirrhosis.

    There are other causes of encephalopathy. I'm not trying to minimise your situation at all and I'm not dismissing your concerns. Something is obviously up and I can totally understand you find it frustrating but it can't possibly be helpful to you to act on conclusions based on an incorrect understanding of how these things work. All you're doing is inviting a discussion about why something can't be what you think it is - and in the meantime whatever it actually is is being ignored.

    Best regards.

  • Hi again, apologies if it came across as argumentative. Nothing personal. Just four years worth of frustration with the medical fraternity. Many thanks for the input and your rationale it's appreciated :)

    Yes, the alcohol will have long since left my body after four years.

    But AH can be hard to stop once it's started. AH is my own guess as to what is going on here but I accept there are some anomalies in that suggestion.

    Another trip to the GP beckons I guess. Sigh.

  • Hello,

    It's fine - I appreciate the sentiment - I think I come across as a bit of a know it all sometimes. I don't mean to and I definitely dont think I do know it all - I just study a lot - but it's easy to get a bit fraught when things are this important and this complex so it's important to thrash things out sometimes..

    I suspect the GP is your best bet.

    In respect of AH though I'm afraid....

    "But AH can be hard to stop once it's started. "

    is wrong - If your AH is severe or persistent and is accompanied by significant liver fibrosis then once you stop drinking the AH stops fairly quickly but the severe liver damage has ongoing consequences.

    If the level of liver damage was mild then stopping drinking stops further damage and the liver's repair mechanism takes over.

    So 4 years after your last drink you don't have AH - it can't be the cause of any issues. And extensive investigation indicates no fibrosis so that can't be it either.

    One for your doctor I think.

    Best wishes.

  • Hello 😘😘 wow - what a comment thread πŸ˜„

    Without going back and reading 'all of your posts' I just wanted to ask if you had been specifically tested for 'Hepatitis C/B' - I notice you said diabetes and thyroid but tests for Hep C are not routine and unless your GP has told you 'you do not have Hep C' then it will be unlikely that you have been tested. I would definitely request this ASAP if it hasn't been done already.

    I fully support all what MisterX, Bolly and Ayrshire say - they are all very knowledgable and experienced responders on this site ❀️❀️

    I was a RN before giving up to look after Hubby 24/7 - so I do have some medical knowledge but as my role on here is as a contributor/member any advice I give will be based on my personal experiences and not as a Nurse.

    I am concerned for you 😘😘😘 as I can totally understand how frustrating it can be when you feel you have something wrong with you and nothing is helping you prove it. I just wondered why you suspected that you had 'Hepatic Encephalopathy' ???? Was it something you read or looked up on the Internet ?? Until my husband actually started to behave like a loony I didn't know anything about HE and to be fair neither did the majority or nurses and doctors (especially in A & E) - like Mr X I like to read stuff and as a 'graduate' I know where to look - so spent a long time reading into HE πŸ€“πŸ€“

    I just wanted to ask why specifically HE ?

    And also did your short term experiment with lactulose make any difference ??

    Are you aware that Hep C also causes 'brain fog' that's exactly the term they use !!!

    Also there are many things that accompany advanced liver disease such as 'oesophageal varices/portal hypertension/spider angioma/gynaecomastia/lichen planus/pruritus' as well as individual symptoms of dark urine and pale bulky stools !!!!

    It seems as this is a great worry for you and I realise that in the past you drank heavily and this may add to your concerns but if you have stopped drinking 4 years ago then this will not be relevant to what you are experiencing now. Perhaps listing all your symptoms even ones that seem insignificant could help lead to the bigger picture. Also I would ask your GP to carry out another set of blood tests - liver function test and fbc and ask to be tested for Hepatitis B and C - explain to your GP your concerns and why - perhaps make a double appointment so you won't be rushed.

    I hope that this helps in some way and I hope that you get the answers your looking for 😘😘😘😘😘😘😘

  • Ok thanks for the replies Mr. X & Robs Wife.

    Requested another blood count before Xmas, not heard anything so yet again I guess bloods are in range.

    Re: Lactulose, GP agreed to prescribe. I took 3 x 30ml over a few days and difficult to ascertain but I reckon it lessened the severity by about 50%. Not definitive though as the period of brain fog only lasted about two weeks in total this time before it disapated and the low blood sugar feelings came back to the fore once more. I never have these two symptoms running concurrently.

    Re: Hepatitis B/C testing, no I haven't asked specifically about it.

    I have insisted on a referral back to Gastroenterology, so will ask about that when Im seen in early Feb.

    Suffering with a bad winter virus at the moment, and yet again with a virus, I'm getting distinct pain in the Spleen area. Which is another reason I think it's Liver problems.

    But we'll see what the gastro says.

    I'll keep the board updated as and when. Thank you all for your input, I appreciate it :)

  • Really interesting thread. I experienced "Chronic H.E." but my liver was chirossed and bloods reflected this, I was told to relinquish my driving license, and I missed chain sawing my foot off by 1" (have the welly boot with the chain saw cut in it as proof!)

    IF you have HE STOP driving! do not use chain saws, get it investigated! I understand HE is toxins in gut not cleared by liver, react with protein (steak is bad) forming amonia, which in blood crosses brain blood barrier and sends you loop the loop!! I suppose another issue could cause the same (or another) chemical to do the same, it might be ammonia from liver failing to clear some toxin or other, it could come from just about any other gland (I suspect) certainly you need a sympathetic doctor, and in my experience Drs. (generally) know little about H.E. and its effects, even less likley to get a Dr. who is sympathetic to helping you, a troublesome patient who may take a lot of attention, easy to say its in your mind, do not drink, NEXT patient ! Good luck, persist to get a Dr. who will help, maybe ask on here if anyone near you knows of a Dr or Consultant who is good with HE that you might seek some advice?

  • P.S. you could ask your Dr. to trial rifaximin which is used to help H.E. I believe it is costly, but if it helped........... anyway, that is a name of the drug used to help H.E. so you are armed with information....

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