1. < Digestive Health

Hepatic encephalopathy

Posted by Lisa @techi, Sep 7, 2017

Yesterday l saw my neurologist at the Mayo Clinic she told me some good news that l don't have frontal dementia and l was suppose to see another neurologist and psychiatrist/ psychologist and l was able to cancel both appointments. But a vascular disease doctor l saw before her was talking about one of my stunts being wide but he didn't know how wide so l had to have a ct of my stomach and pelvis to see how wide and if they would have to do anything. So he put on my notes that he will have to talk to a gastenerologist for a second opinion. Well l thought that was great. Then l started itching this morning and l had to take a shower and put on my cream from the dermatologist. Then l looked up hepatic encephalopathy which l do have and it seemed like the neurologist sounded like she wasn't saying anything that seemed right to me. When l asked my husband he said she sounds like she's being careful what she's saying because l have been misdiagnosed a lot. When l was reading the stages it seems like l have symptoms of all 4 but she said that maybe sometimes your ammonia levels fluctuate. Which l can see that. Then my general practice doctor referred me to a liver clinic instead of a gastenerologist. And l was reading that when you have stunts you are suppose to be seen every month then 6 months and then if everything is alright maybe you can see the doctor every year just to make sure you have no problems with the stunts. After my shunt was put in l saw my gastenerologist once and then he said he was retiring and asked me which of his partners l wanted to see. I tried to make an appointment because he didn't say it was a rush he said l could see him next year. Then when l tried to make an appointment they wouldn't schedule me an appointment because l owned them 62.00. And l really wasn't in to much of a rush since all my other hospital bills. So now l tried to make an appointment again since the Mayo Clinic was asking me about seeing a doctor at home. They called me and scheduled appointment then l got a call from the hospital saying my general practice doctor is referring me to the liver clinic. So when l asked the question why l am not going to the gastroenterologist l can't get an answer that makes sense. But my ammonia levels are ok so l just don't understand doctors now a days. If you asked a question about your health you got an answer but l guess they know in my case l could sue them. Because l was told all these diagnoses l had and all the meds they gave me that now l am allergic to all these pain meds. I guess l will go natural remedies we didn't have all these problems and l am finding out instead of them helping they are harming you.

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adah | @adah | Feb 9, 2019
In reply to @contentandwell "@adah it does sound like HE and I presume the doctor must have felt that he..." + (show)
@contentandwell

@adah it does sound like HE and I presume the doctor must have felt that he did if he put him on lactulose. I never had a biopsy for my cirrhosis diagnosis, I believe I had a CT scan. I remember the test -- I had to drink some horrible liquid in three parts and then have a very brief test done -- but it was so long ago, and I am not a medically inclined person, that I forget which test it was!
From what I have heard people experience HE in many different ways. My HE episodes started with a really upset stomach and fatigue. They progressed to being irrational, sometimes minor, sometimes major. For the minor ones, I could sleep it off. The more major ones put me in a hospital.
I hope if it is his liver you are able to get him to a hepatologist. I live in NH and there is only one in the state, two hours away at Dartmouth, but Boston is only 55 miles away so I went there when it was determined that I had cirrhosis. The hospital at Dartmouth does not do liver transplants either.
JK

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What are they doing for your liver?

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1 reply
adah | @adah | Feb 10, 2019
In reply to @rosemarya "I did not experience hepatic encephalopathy during my liver disease and failure. My doctors kept careful..." + (show)
@rosemarya

I did not experience hepatic encephalopathy during my liver disease and failure. My doctors kept careful watch on my ammonia levels and they always stressed to my husband to be alert for mental signs where I wasn't acting like myself. He was supposed to report it if he saw signs of it.

Here is what I found from The American Liver Foundation.
https://liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/hepatic-encephalopathy/diagnosing-hepatic-encephalopathy/
adah, Have you contacted the doctors about his mental changes? Is he still taking lactulose?

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The dr knows of his mental confusion and yes he is still taking latulose. But has never mentioned HE

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 10, 2019
In reply to @adah "The dr knows of his mental confusion and yes he is still taking latulose. But has..." + (show)
@adah

The dr knows of his mental confusion and yes he is still taking latulose. But has never mentioned HE

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adah, You are asking excellent questions. As a mother, I feel your fear and your concern about all of this.
Does anyone go to the doctor appointments with your son? If not, someone should do this because an extra set of ears and another voice could be helpful, especially due to the mental confusion that he is experiencing.
When is the next scheduled contact with the doctor?

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adah | @adah | Feb 10, 2019

I do go to dr with him. He is going to have a liver biopsy.
But I don’t think that will tell if he has HE

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JK | @contentandwell | Feb 10, 2019
In reply to @adah "What are they doing for your liver?" + (show)
@adah

What are they doing for your liver?

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@adah I had a transplant in September, 2016. All better, and life is good. I cannot say enough good about my care at Mass General. I love that place. I know Mayo is great too, but for those of us in the Northeast, MGH is a wonderful choice. If they had not come through for me soon I was about to get on the list at Mayo, but thankfully MGH came through.
JK

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rwiltgen1 | @rwiltgen1 | Oct 18, 2023

I have been diagnosed with Waldenstrom’s and have slurred speech. Is this a symptom of Waldenstrom’s?
Ray

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joeysteiner | @joeysteiner | Jan 30 12:56am
In reply to @contentandwell "@techi. I’m a little confused. Have you been diagnosed with non-alcoholic cirrhosis, also referred to as..." + (show)
@contentandwell

@techi. I’m a little confused. Have you been diagnosed with non-alcoholic cirrhosis, also referred to as NASH cirrhisis from fatty liver? I assume you have if you are having confusion episodes, HE. If so, your family needs to learn about HE and the other symptoms you may have. Someone in your family should accompany you to the doctor to learn about it, or at least speak to your doctor.
I had HE episodes, some minor, some major that put me in the hospital. These started happening before I was diagnosed with NASH cirrhosis. My family was very concerned, the PCP I had when I had my first episode thought I had Alzheimer’s, which a neurologist scoffed at, but because I didn’t have some symptoms that are common with liver problems such as jaundice and out of range AST and ALT numbers, my PCP (a new one, not the one who suggested Alzheimer’s) could not figure out what I had, and sent me to the neurologist. He, after a couple of appointments suggested my problem was my liver and after tests, cirrhosis was finally diagnosed.
Prior to the diagnosis though my family was extremely concerned and had no idea what was wrong. I’m sure your family must also be concerned and if they speak to your doctor maybe that will help them to understand.
I hope your family will learn more so they can help you through this ordeal and understand HE episodes.
JK

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Hey JK,

Do you have the info for families of HE Patients?

I'm looking for info for my loved ones...

Joey

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 30 7:02am
In reply to @joeysteiner "Hey JK, Do you have the info for families of HE Patients? I'm looking for info..." + (show)
@joeysteiner

Hey JK,

Do you have the info for families of HE Patients?

I'm looking for info for my loved ones...

Joey

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Hello Joey @joeysteiner, Welcome to Connect. I thought I would respond to your question for JK. You might find the following discussion helpful to ask questions.
-- I have questions about Hepatic Encephalopathy: https://connect.mayoclinic.org/discussion/hepatic-encephalopathy-4/

Here is a search of Connect showing related discussions that might also be helpful - https://connect.mayoclinic.org/search/discussions/?search=Hepatic%20encephalopathy.

Also, the American Liver Foundation is a great resource for caregivers and patients for learning more about Hepatic Encephalopathy - https://liverfoundation.org/liver-diseases/complications-of-liver-disease/hepatic-encephalopathy/

@rosemarya, @sharonagnes, @athenalee and others may also have some suggestions or thoughts to share with you. Is your loved one currently being treated for HE?

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