British Liver Trust
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Liver tests

I posted something similar before....is there anyone on here who has had a complete liver work up including an ultrasound, mri, ct scan, fibroscan and percutaenous liver biopsy all come back normal but still have liver disease.? I have been experiencing worsening symptoms including elevated ammonia levels leading to confusion...any ideas on where to next..all my blood work is close to normal with only alt slightly elevated

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It sounds as if you've had every test possible so there really is nothing else the doctors can offer liver related. You will have to trust what they tell you have you actually had your ammonia levels tested. Elevated ammonia is usually a sign of decompensated Cirrohsis and I would think you would have other Symptoms but I'm not a doctor. Don't drink if that is the cause and eat healthy.

Take care

Boone

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Hi Boone yes my ammonia levels are slightly elevated and I have countless symptoms but every single test has come back clear....which is strange

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I don’t have the same diagnosis I have Cirrhosis caused by Hepatitis C And I have Hepatic Encephalopathy aka (HE), You can read more here about this, (for this wonderful side effect I take rifaximin plus lactulose twice daily to help control it) and will be getting the brain mapping done sometime.

webmd.com/brain/hepatic-enc...

Hepatic encephalopathy (HE) is a brain dysfunction caused by liver insufficiency and/or portal systemic shunting. In patients with decreased hepatic function (eg, patients with cirrhosis), toxins from the gut can enter the bloodstream and reach the brain, where they affect neurotransmission. This can cause episodes of HE, which may present as alterations in consciousness, cognition, and behavior that range from minimal to severe.

However Sounds like you are in for more testing of the blood and digestive tract, with the test being normal so far, have they ruled out Noncirrhotic hyperammonemia ? Hows the heart and your breathing ? A diet with no red meat or foods with seeds, there are lots of diets on line to help you if you can’t see a Dietitian to help. And cut back on any alcohol that will help especially with your alt

ncbi.nlm.nih.gov/pmc/articl...

Good luck

🤠DlD

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Thanks for you’re reply....do you find that the Rifaximin and lactulose help a great deal?

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I don’t, the medication worked excellent at first but a year later to me it doesn’t seem to be as effective,the doctors seem to thank it does (but I will have a brain mapping done) 🤷‍♂️. That very well could be my fault though as I have cheated on the diet (gained weight) which I can say as it turns out it’s mostly important to follow or you will pay for it dearly. Or it maybe it’s I am progressing along with Cirrhosis and that the medication isn’t going to be as productive over time. It’s always something different.

🤠 Dld

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I wish I had not read your account of Rifaximin. I had five severe hepatic encephalopathy bouts which ended me being forcefully taken to A&E. I was then put on Rifaximin and five months in I have had no further bouts. Have you had a reacurance of hepatic encephalopathy after a year of taking this new drug? Kind regards

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Yes but not as severe or frequently but I know that I am loosing control by getting frustrated easily especially when I put myself in situations that require me to make decisions swiftly or multitask. I am trying to stay consistently on a good diet and take the Rifaximin & lactulose at least twice daily with the understanding that yesterday is best I am going to be. The doctors have suggested more medication in the form of Benzodiazepines or Antidepressants which could be counter productive to care for HE, so all this requires further psychological evaluations and so on .

🤠 DLD

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I just live day to day I have been very confused with diet though with diabetes and NASH what the hell have I got to eat?

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I understand seems like my diet changes each dr visit. Last 90 days everything I ate was wrong so we change the latest is this lectins free diet with low-protein which is to reduce the intestinal ammonia production and help prevent hepatic encephalopathy. The problem with this one is that resting energy expenditure is increased in patients with cirrhosis relative to their body mass, so what are you going to do. If it looks or smells good can’t have it. Sometimes I catch myself daydreaming while looking at certain foods in the store.

🤠DLD

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Oh I know I like cooking and baking. When I eat I have little pots to measure portion size when I see my meal it's smaller than a five year olds portion. I am constantly hungry. I can't exercise as I would like just a small slow walk knocks me out for a couple of hours. I HAVE NO LIFE IN ME JUST EXHAUSTED ALL THE TIME. I have to battle my body everyday to get up off my bottom and do something but if I don't I become very depressed and I put weight on and when your only 4ft 10inches every pound shows. Whoa sorry got carried away there. 😁😁😁🤗

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I get hepatic encephalopathy bouts and I can tell you it's not a nice state to be in. What is not said above is that you can fall into a coma and die.i had a ultra sound scan a couple of weeks ago and she agrees I have cirrhosis I had a alpha fetoprotein of 3.1. She also said I had a simple cyst in my left kidney.

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I understand that this HE is terrible I couldn’t find my bank card in my wallet the other day, my son pointed it out to me it’s right there where it has always been. I guess I couldn’t see it or I did see it but it didn’t register at all. And that was frustrating as hell for what seemed like hours I was looking all over calling the last place I used it and all the time it’s in my wallet. My alpha fetoprotein is 6.4 now which is down from 11 last year but up 2 points from the last test.

Good luck stay positive

🤠 DlD

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As you know we aren't qualified to give medical advice as we aren't trained and even if we were, we would need your full medical history.

However we can lead you to relevant professional articles. In the one from the link below it covers the fact that research is showing thatvliver disease is not always the cause of raised ammonia levels.

I hope it helps you with framing the questions you want to ask your doctor.

ncbi.nlm.nih.gov/pmc/articl...

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Hey Ted I have seen ypur posts on this before. There are other things that can cause raised ammonia other than cirrhosis such a metabolic disorders. Reyes syndrome etc. Given the results I think its pretty clear you dont have liver disease or cirrhosis to say the least. Perhaps time to look into other things. Best of luck Ted

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Hi Teds123,

There are some sites online that talk about non-hepatic hyperammonaemia. Most that I found are medical sites but they could give you and/or your doctors a different start point. From what I read this is a newish thing that is getting attention because it was seen primarily in patients with liver disease.

Perhaps you could talk to your doctor about the various other possible causes.

I didn't want to copy and paste here any of the sites I found that discussed it, I don't think this is the right place for that and I think you would be better off discussing it with your own doctors. I just wanted you to know that there is some info that suggests this is not as uncommon as we might think and there is some research and info out there for your doctors and yourself.

Best wishes,

Mary

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