Have I got HE

[Cazza_BDA]

I have had compensated cirrhosis for a number of years. Recently after a spell in hospital with Hepititis my fibre scan score went up to Decompensated F4 status.

I have finally totally given up alcohol since last November.

I was feeling great at first, but for the last

4-6 weeks, my eyes have developed big bags underneath, feeling very fatigued. Pains in arms & legs at night, and forever getting up to go to the toilet during the night.

My sister's tell me, I look terrible, & I have really bad mood swings, where I turn around and hurt the people I love the most.

One of them even acused me of drinking again, even checking for evidence, which really did hurt.

Even on my 'big' birthday, when they went out of their way to make it special, by going away for a weekend. It just felt like torture to me, watching them drink & enjoy themselves, I just could not stand being near them talking a load of drink induced rubbish. Where as, this was me. Not so long ago.

I am just snapping, with angry remarks, and being just blinkin awkward.

My bowel movement is fine, I do not have jaundice, although my memory and concertration is rubbish.

I have blood tests next week, the last 2 lots were not great, and seeing the hepatologist soon after.

Does anyone else recognise this as being part of HE.

[Fibro2021]

Hi, I'm really sorry to hear how rough things have been for you lately.

The symptoms you've mentioned — the fatigue, mood swings, sleep disturbances, and difficulty concentrating — can indeed be signs of hepatic encephalopathy (HE), even if your bowel movements are normal and you don't have jaundice. HE doesn't always follow the textbook pattern, and in people with decompensated cirrhosis, it can show up in subtle and frustrating ways.

It’s definitely worth raising all of this with your GP and especially with your hepatologist when you see them. Sometimes doctors will order an ammonia test to support the diagnosis, but actually, in many cases like yours, the diagnosis and treatment decisions are based more on the overall picture of symptoms and blood test trends, rather than ammonia levels alone. So even without extra tests, your team might decide it’s appropriate to start treatment or look at adjusting your current medications.

It might also be important for them to check if anything else has triggered this worsening — like an infection, constipation, or even recent medications.

You're doing an amazing thing by staying alcohol-free, and I hope you can get the support (and relief) you need from your team very soon.

[10864]

You’ve done amazingly well giving up alcohol and you’re giving yourself the best chance at a good recovery - well done!

I agree with Fibromthat you should talk to your go and rule out any medical reasons for these mood swings.

My additional advice though is a dependency on alcohol is not only physical but a mental dependency and addiction also. If you’re trying to do this alone without a support network, that mental addiction will be very hard to overcome, especially in situations such as you’ve described.

A support group like AA can help you understand the disease more fully and give you tools to help you cope with times like those - or even feeling happy simply avoiding them for a while! It’s one thing stopping drinking, it’s another living a happy sober life and a program can really help.

Many people think “AA is not for me, it’s for real alcoholics”. In truth, it’s for anyone who not only wants to quit drinking, but to stay stopped and be more than happy with their new life.

Look up a could groups local to you and give them a try, explain your worries and feelings if you’re comfortable and I’m sure you’ll find guidance.

Wish you all the best

[ColinH324]

It could be the signs of mild HE. You need an ammonia blood test, which is usually only carried out in hospitals as it needs the blood to be cooled to prevent the levels reducing while waiting to be processed. I have an ileostomy due to uncontrolled IBD, so my consultants are treating it with Rifaximin, as no large bowel means the other treatment - Lactulose, is unsuitable.

Every consultation I have at the liver clinic usually concludes with a test where I have to name as many animals as possible in 1 minute. On good days I do 30 or more, on bad days I am lucky to get 10. It does seem to fluctuate and it is frustrating having the mood swings that seem to come out of nowhere.

[PastaLover53]

Good morning Cazza. My names Peter. I have posted on here before. Like you I went through a really heavy period of excessive drinking. Stopped in November 2023. Since then I've been battling with numerous consultants and Doctors in the attempt of getting better. I too am displaying similar symptoms to those you describe. Heavy mental confusion, often frightening at times. Lethargy, fatigue. Heavily distended abdomen. Frequent visits to the toilet. Pains in my legs. Especially at night. Intermittent pain in lower right hand side.

That said, all tests I have had done are not confirming liver damage. Fibro Scan came back ok. Score FO-F1 No Fibrosis. Highest k Pa 7.8 Lowest k Pa 5.1. Non cirrhotic. Which presumably means I haven't got cirrhosis? I have now been diagnosed with a condition called SIBO. (Small intestinal bacteria overgrowth). Currently taking Rifaximin and Metronidazole for this. Brain fog seems to be improving albeit slowly. But still have a heavily distended abdomen and occasional pain as I described. So I guess it's just a case of 'suck it and see '. But all said and done i still believe I have liver issues. Although as I said the Drs are saying otherwise. But I will agree with Fibro, you have made the right decision to stop drinking, but I guess we're kind of in the same boat in terms of trying to improve our health.

I do wish you well on your health journey, and genuinely hope that things improve for you. If you ever want to offload, feel free to slip me a message and I will respond. Take good care of yourself, Peter. X