Elevated ammonia levels

@adah No, I was never told I did not have HE. HE was what brought my cirrhosis to light, although prior to having my first episode I had other cirrhosis symptoms that the doctors did not connect to cirrhosis -- low platelet count, shaky hands, recently diagnosed diabetes, leg cramps, and edema. The HE episodes were thought to be neurological so I went to a neurologist. He was the one who said he thought the problem was my liver, at which point I was sent for a CT and that confirmed cirrhosis. A couple of the HE episodes had put me in the hospital and he suggested they test my ammonia level, which of course turned out to be high.
I am very thankful that it was diagnosed when it was because it turned out I had malignant lesions in my liver and if there had been more or if they had been larger, I could have been eliminated from being a transplant candidate.
JK

What kind of symptoms made you be hospitalized for HE? If you don’t mind me asking?

@adah I don’t mind you asking at all. It was a terrible time but if what I went through can help anyone else I’m happy to talk about it.

Some of my HE episodes were mild. I would have a bad stomachache, feel out of it, go to bed and wake up hours later, or the next morning and be fine. The more serious ones caused some delirium, non-sensical behavior, and complete forgetfulness. For instance one time I was thirsty and I kept going to the kitchen to get a glass of water. I ended up with about four glasses in front of me on the table. I also put some clothes on backwards. One time I became very unresponsive, I just sat on the sofa staring into space. That was probably the worst because HE episodes can cause coma and even death so the unresponsiveness was probably heading to that. I was also very belligerent and combative. There was no way my husband would have been able to drive me to the hospital so I ended up going in an ambulance about three times.

My episodes always started with a stomachache and fatigue. If I was out anywhere and my stomach felt the least bit off I would immediately head home. Most often it was a false alarm but better safe than sorry. I was fortunate in that most of the time I was able to lead my normal life whereas some people are in a constant fog.

Please feel free to ask any other questions you want answered, either here or in a PM.
JK

Thanks for posting this. In my case it is my husband and he damaged my relationship with some of his family. I was the problem. I tried to explain about the HE but was ignored. I guess that is easiest route to take for some people. Some relatives and friends stuck with him and I am grateful for that

I have significantly elevated ammonia levels in my blood. I have chirrosis of the liver since 1977. Recently have had low potassium and magnesium twice. Can the low electrolytes trigger high ammonia levels.

I was recently diagnosed with Idiopathic NCPH due to a. finding of Rectal Varices during a Colonoscopy. Had a Transjugular Liver Biopsy with a pressure of 8. EGD found no Esophageal Varices. Treatment per Hepatologist is to monitor liver enzymes for changes and an EGD every 1-2 years. Continue to avoid ETOH and eat a well balanced diet with exercise (walking, etc).

My father was recently diagnosed with elevated ammonia levels which are having an impact on his cognitive abilities as well as his gait. He has had a number of tests (MRI, CT, Bloodwork, etc.) that do not indicate any type of cirrhosis with his liver. Initially, he was seen by a neurologist due to his past history of stroke, but they have discounted any type of neurological problems and ran an ammonia test to learn that those levels are high. He is 77 years old. He is currently hospitalized and is on lactulose (20 ml 3x a day) and rifaximine (500 mg 2x a day). Initially his ammonia was at 99 umol/L and the past few days since starting lactulose it has been: 32, 96, 63, 84. The ups and downs of the ammonia counts seem to correspond with his "brain fog." The doctors are at a loss as to what could be cause the ammonia in the first place and the family can't understand why the ammonia is jumping up and down even though he is receiving medication to keep it down.

Does anyone else have any experience with a similar case and have any thoughts on either cause for the ammonia in the first place or additional treatments that might help reduce and keep the levels low?

Any and all advice is welcome. I can provide additional history and bloodwork information if that would help.

Thank you in advance.

Liver processes the ammonia your body produces and creates urea that is kidneys process next. If the liver is not functioning correctly you will have ammonia levels increase. After they get to high you will feel ill, foggy headed, balance issues, and you can pass out and eventually die. It will poison you. I had issues like this when I needed a Liver transplant. One day I lost consciousness and my son found me on the floor in the living room and I had left a mess in the bathroom and all over myself. I was not aware of what was happening until EMS took me to the Emergency. I had to be hospitaled for a week until they doctors could reduce my ammonia. Eventually I received the transplant.