Elevated ammonia levels

@peder417 So they still have no idea what is causing high ammonia? Have they indicated what else can cause that?
Can gastroparesis cause high ammonia? My cirrhosis was diagnosed by way of a CT scan if I remember correctly. I went through so many tests over time that's all a mish-mash in my mind, and I am not medically inclined.
Sorry, lots of questions but since I am only familiar with high ammonia from cirrhosis I am curious about other causes.
Thanks.
JK

I have an ileostomy with 6 inches of small bowel. I’ve been on TPN for 12 years. Recently, about a year ago, I started having seizures, dizziness and lost of memory. After 2 MRIs and 2 neurologists I was told there were no medical reasons for my symptoms. After my primary doctor ran a blood test my ammonia level was 300. Due to the TPN and fluconazole (which I have to take to avoid another heart valve infection), my liver produces high enzymes and isn’t processing the ammonia. I can’t take other meds that cause diarrhea. I just started taking Xifaxan. My primary recommended me following up with my gastroenterologist. Should I see another specialist? Will this medication stop the dizziness and seizures? I know I’ll not get my memories back.

Hi @mjgstewart and welcome to Connect. I will try to answer what I know from my experiences but I suspect you will get other responses also.

I was on xifaxan due to having NASH cirrhosis. When you have cirrhosis your liver cannot filter out the ammonia as it should so it can go to your brain and cause problems, generally confusion, and sometimes more serious -- delirium, coma, and even death if not treated. The ammonia did not cause me to have dizziness and seizures, but we are all different. I got very irrational, and one time very unresponsive.
I would definitely see a gastroenterologist, they are the most experience with this.
Are the memories you are concerned about from things that have happened when you were experiencing these episodes? I lost some of those memories but other memories were still intact.
Do they say if this is something you will need to take forever or can they do something that will prevent these problems?
I will be very curious to see what the doctors have to say, I had never heard of ammonia problems for conditions other than cirrhosis but I knew there were some.
JK

Hello @mjgstewart,

You may notice that I moved your message and combined it with this existing discussion on high ammonia levels. I did this as I thought it would be beneficial for you to meet a few other members who are discussing much of what you are experiencing – I’m confident @peder417 @adah @frankw54 @kltchrmn and other will return and join this discussion.

If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Hello @three,

I’m so sorry I didn’t see your message earlier; I sincerely hope your husband is feeling better now. Since you mentioned that your husband may not have liver disease, I did a bit of research which led me to this information about "Noncirrhotic Portal Hypertension or NCPH.”

Portal hypertension is abnormally high blood pressure in the portal vein (the large vein that brings blood from the intestine to the liver) and its branches. Cirrhosis is the most common cause of portal hypertension, but it can also be present in the absence of liver disease like cirrhosis – noncirrhotic portal hypertension. https://aasldpubs.onlinelibrary.wiley.com/doi/pdf/10.1002/cld.497

@three, has your doctor offered a treatment plan for your husband?

@mjgstewart

Xifaxcin will help but not that much. Please ask your doctor for RAVICTI. It removes ammonia through the urine. It is extremely expensive which is why doctors will not prescribe it. But it sounds like this is what you need. I am trying to just get a prescription of it for my husband but doctors go deaf when you ask for it. The cost of this drug will not drop until 2025 when it comes off patent. I worked in big pharma research for 38 years and I am not sure how to get it. But I think you need it. Maybe if enough people push for it. Good luck to you. I will leave a message here when I am able to get it for my husband. So far all I got was a prescription for zinc something from the 1950's Try cutting back on protein but do not give it up altogether.

@chrissey I’m not sure who this is a response to, and what was causing their high ammonia levels, but when I had cirrhosis and high ammonia levels it kept things in check for almost a year. Then my cirrhosis progressed to a point where I needed to supplement with lactulose. Prior to taking xifaxan I was having problems at least every couple of weeks. I was taking lactulose but the xifaxan worked so much better.
If the other drug can’t be prescribed, xifaxan is a good alternative in my experience.
JK

That is the problem. Xifaxcin has little effect now. It was very good. But it is different for different people. Lactulose is really the only thing that effectively lowers ammonia. This is through poop. The person that I answered has had surgery on his bowels. Laxatives for this person is scary but that is what this doctor wants to give him. The only drug out there that would help is Rivicti. There is also a lower cost version but the sodium in it causes blood pressure problems. Rivicti will lower ammonia through urine thus be easy on this person's digestive system. Doctors will not prescribe this only because of cost. This person has to ask for it.

Have you ever been told You did not have HE? But they said it was sinus imflammation? On the cat scan?