Blood Sugar/ hypoglycaemia or ammonia/HE

My husband is having a lot of shakiness / tremors. It is mostly noticeable in his hands, but sometimes he says he feels it internally. It seems to coincide with brain fogginess. I check for hand flapping (HE) and have had his ammonia levels checked too. Nothing is out of range, but I wonder how much those levels might fluxuate. Would it bounce up and down daily, be a slow and steady rise, only go up intermittently based on foods eaten? We are beginning to test his blood for fluxuations in glucose to help at least rule that out. His GP says go see your gastro doc and ask her to send you to the neurologist if she can’t figure it out. Any insight or experience with this would be appreciated.

I found myself having the same problems in the last few days which is new. I had an epilepsy attack while driving the car 4 days ago and the guy from the ER tested me with a sugar test. It was 60 which means I almost got into coma... Also I've started swelling up to the point I had to go to the hospital again 'cause I couldn't walk anymore. They tested liver enzymes and everything else and it showed absolutely nothing. Unfortunately didn't find the solution yet :(

Dolphin5 - did you ever learn more about ammonia levels/HE - my father is currently experiencing this - was in hospital and now in a skilled nursing facility before they did an ammonia blood test and we realized that was what was causing his mental confusion - it has varied and they’ve been treating with lactulose and now rifaximin - too early to tell if it’s working - though his mental confusion has lessened. I’m trying to find out more about treatments for this - or even just to know what to expect

It’s been just over a year now since we were dealing with this. Gosh, I don’t envy you. My husband was transplanted June of 2017. I have not thought about all the precursors to liver transplant in a long time. What I can tell you is that, yes, that is the treatment. The lactulose makes you poop out the toxins that are building up in the brain. He was on rifaximin when he was admitted to the hospital (his liver suddenly decompensated and he was transplanted 2.5 weeks later) and I don’t know how that worked for him. Everything was failing at that point so it was hard to know what was going on at that point. Prior to getting admitted , the problem with the lactulose for my husband was that he would only take a half ounce or so a day because he was still working and commuting so didn’t want to have inopportune “emergencies” like, say , while on the road commuting or during a meeting. That said, he really should not have been working at that point because of the HE. He should not have been driving over 100 miles a day in that condition , plus working and thinking straight was extremely challenging. But in answer to your question, all the research I did and questioning the neurologists, hepetologists and gastroenterologist about HE … what I learned is, everyone is different in how they are impacted. The blood tests used to determine the amount of ammonia build-up is not a hard and fast measurement of how much your brain is being impacted. I also learned that you have to take a LOT of lactulose to make a difference, which means you end up having to remain very close to a bathroom. The more you take , the more you s**t. I also learned that HE can sometimes cause long-term problems if it isn’t controlled so its important to take that lactulose! I think my husband was up to about 4 - 1 oz. doses a day by the time he was hospitalized.

Hope that helps. My best to you and your family. I’m so sorry you have to go through this, but hang in there. Transplant does happen and it does work. Life changes… adjustments take time…patience is needed because it certainly isn’t easy. Great that you found this forum. It helped me so much when we were going through this.

Thank you so much for the detailed response - dad is currently on 3 doses a day of Lactulose - and experiencing the s**t problem you described …he isn’t a candidate for a transplant because of his age (82…they say the cutoff is 70)…so we’re just trying to manage symptoms -he has been on 3 daily doses of Lactulose about 3 weeks now and Rifaximin about one week - and it seems to be making a big difference in his clarity and ability to use his body - I can only describe him as “frozen” before they started the Lactulose - it was like his brain couldn’t tell his body what to do…such as using his hands and thinking through steps to an action. Glad that your husband was able to get the transplant and wishing you well…

Likewise. I hope you can keep your Dad comfortable. He is blessed to have you and I hope you have support around you too, as caregivers need also. I just went through the death of my father with the help of hospice and my loving family. During my husbands sudden liver failure , we were fortunate enough to have his transplant in the city where 2 of our adult sons live. Hang in there… and keep asking this community questions! Such good support here!