This is a topic that is the absolute hardest to understand. I asked my doctor, “Do I have hepatic encephalopathy from liver? He looked at me like I was crazy. He had just told me to take my lactulose as prescribed. Believe it or not, I still didn’t get it. The truth was that I sure did have more than simple brain fog, but did NOT know it.
With liver disease, we want something that we can measure, so we ask questions. What is my Child Pugh or MELD score? Many want to know about grades and stages of varices. Those are areas we can measure. Not so with hepatic encephalopathy, commonly called HE. Let’s dive into this.
Hepatic Encephalopathy
He is defined by the two words hepatic which is for liver disease, and the word encephalopathy, which is a term for many different conditions that cause your brain to have malfunction. We’re just talking about the kind caused by liver disease. Even then, brain dysfunction that is caused by HE is not the same in every person.
HE can be mild or severe. It can show up as confusion, memory loss, personality changes, and go all the way to a coma in the most severe form. Ultimately, it’s brain failure that starts with liver failure. Sadly it is a neuropsychological disease. It can be a nutritional illness such as when Organ Failure: Hepatic Encephalopathy causes muscle wasting and frailty.
Our HE Story
In my story, I denied there was anything wrong with me. I argued that the lactulose was not needed. In fact, I was dizzy and falling, using sticky notes to perform my job well, and spent way too much time with confusing thoughts. I lied to my doctor and family about taking lactulose because it didn’t taste good and it kept me sick to my stomach. At the time, it didn’t seem dishonest. More like an honest person who was more sick than she could understand.
Through it all, I truly was traumatized and did not understand what was happening. After applying for disability and getting denied, I HAD to go back to work. So I faked it there too. My whole world was a disoriented scene to an outsider looking in. But to me, it felt like I was just fine. My working memory was reduced, but some areas of my brain were functioning A-OK. By the time I was listed for a liver transplant, HE was out of control. My sweet nurse practitioner called me out, and then prescribed Xifaxin. Check out my youtube on that.
Any Liver Disease?
Truth is that with liver disease, no matter what causes it, your body can lose it’s ability to filter your blood, body, and brain. Excess ammonia can be in your bloodstream and cause your brain to slow way down.
Brain Abnormality – What?
At its most basic level, psychiatric problems, basic working memory, and neurological dysfunction all fall under the broad term of hepatic encephalopathy. It can be caused by any degree of advanced liver disease and failure, and also portal systemic shunting.
Do I Have Hepatic Encephalopathy from Liver?
If a hepatologist tells you that you have it, believe them. I didn’t and it hurt me in the long run. There are tests, however they are pretty iffy and the results are vague.
Tests for HE
The Gold Standard tests for HE are broken down in to psychometric and neurophysiological. There is a Psychometric Hepatic Encephalopathy Score. meaning that they give simple paper and pencil tests. Dr. Doug La-Breque tells great stories of his years in helping patients get an accurate diagnosis. There may be reaction time tests that can be done online or in an app on a phone. Most of these are also motor reaction. Basically, how fast can you click the right answer. We’ll learn more about this later.
The other that is widely used is the blood lab test for ammonia. Doctors don’t all agree that this is the best marker because ammonia only affects your brain after it crosses the blood-brain barrier. So serum levels in your blood are not accurate.
The MRI may be used but it has no hard evidence. An electroencephalogram may prove changes in brain waves and white matter. Most doctors consider this as non-specific since it can show changes that are made by other metabolic disorders or from drug and alcohol use.
Do I have hepatic encephalopathy?
Has your doctor ordered any tests for HE? If you have asked yourself the question, Do I have hepatic encephalopathy from liver disease, follow me for updates. I’m almost 10 years post liver transplant and know for certain that there are irreversible components of HE that leave me all shook up to this day. As always, if my blogs are not easy to decipher, I’m blaming the long tern damage from HE. We’re all learning to confront our side effects and symptoms while overcoming them with liver disease.
We’re in it together. Xo Karen
