Avatar universal

Hepatic Encephalopathy or something else

Hi guys,
I am 36 years old male and just finished Hep C therapy 6 months ago.
3 months ago virus was undetected.
But my concern is how I feeling.
It started about 2 years ago. I felt like my head full of cotton swabs
or in fog. And I get some days better some worse but it always there.
I wake up in the morning and feel more less ok but when I come to work
it starts to cover me around 11 and it only gets better by the evening
when I come home.
It is like I feel little bit disoriented and confused but at the same
time not to degree that other people can notice.
Also I have red palms sometimes and some little red dots on my body.
My doctor told me that I don't have cirrhosis because my platelets
around 230-240 and other markers within norm.
I started to take lactulose lately but don't feel much effect so far.
I still try to go to gym 3 times a day but I have energy for 30-40
minutes of exercise no more.
I did not do biopsy before and now doctor says that I don't need it now.
Also my stool sometimes light sometimes more less OK and I have
discomfort in my right upper site all the time although mild one.

Can you guys comment on my symptoms. Is it possible that I have
cirrhosis and hepatic Encephalopathy or platelets and relatively
active lifestyle indicate otherwise. I don't have much energy although.
Thank you very much and I will pray for all.
10 Responses
Avatar universal
it is possible but I doubt you have cirrhosis. listen to your doc he can look at your blood test and tell if you have cirrhosis. of course if you want to be 100% sure find another doctor that will write the script for the biopsy. or at least tell your present doc that you want to have a blood test called the fibroSURE to see what it says. best of luck
Avatar universal
Question...who prescribed Lactulose for you? Have you ever had your ammonia level tested? Is your doctor a gastroenterologist, hepatologist or regular GP?

I ask because I can't imagine a doctor would prescribe Lactulose for a patient if he/she was not experiencing high levels of ammonia in their blood stream. It is my understanding (and I could definitely be wrong, not an MD) that high ammonia levels tend to go hand and hand with the last stage of liver disease.

I also think your doctor is dead wrong to not want to do either a biopsy on your liver to determine exact stage and grade of your liver. Or the other test, Fibroscan? can't seem to remember the name, but it is a scan I believe opposed to an invasive procedure.

My husband is the one with HepC and cirrhosis. He has mentioned having light colored stools but has not had issues with red palms or red dots on the body.

If I was you I'd definitely get a liver biopsy and have my ammonia levels checked. I'd also find myself a doctor who was willing to answer my questions and not just tell me "you don't need that." I'm seriously questioning why he has you on Lactulose and doesn't seem interested in finding out the status of your liver or the levels of ammonia.

Let us know.
Avatar universal
Thanks for your answers.
Doctor did not prescribe lactulose I decided to try it just to check if it will help with my symptoms. In Canada it is available over-the-counter.
Fibroscan / Fibrosure is not available here in Canada so I guess I would have to go
with biopsy. I will try to get scriptI for it next itme I see the doctor.
Avatar universal
Good morning,
Some of your symptoms are familiar, I have had the red palms for years, some drs. have indicated liver problems in the past, but my enzymes have always been normal so they never pursued the Hep c till 6 years ago, was dx and delayed treatment, did have a biopsy in 04 which showed a stage 2.  The answers about the lactulose and blood ammonia,  my last visit to the gastro showed a blood ammonia level of 192 which is twice to high end, but I was not experiencing any symptoms, (had another test last wk no results yet) but with all I read about the ammonia levels it scared me a lot...... I have now applied for the meds through Roche and hope to start tx soon.   By the way CONGRATS on your successful tx.........
Avatar universal
I can tell from the info in your post that you dont have Cirrhosis or Encepalothopy.
Post treatment fatigue is common-give it more time and discuss with your doctor.
Avatar universal
Very alarming to hear you are treating yourself !!! you should not be taking lactulose without knowing your amonia levels. It is one thing to obsess on internet symptoms but to treat yourself is just stupid & dangerous !!! several years ago after I found out I had HCV I was in shock and came on the internet and convinced myself I had every disease under the sun including cirrhosis. I will never forget I was at one of the best hep docs in the country if not the world and said to him, doc what do you think about these palms? he looked at them and said what do you mean they look like normal palms? showed me his and they were redder then mine :-)  I was convinced that they were red, looking at everyones palms. My point is the mind is a strage thing and can work you into thinking bad things. The internet can be very harmful to some people. I now use the internet the way it was meant to be used, to gather information. I use it to gain knowledge and then use that knowledge to make sure my doc is treating me properly. Please do yourself a favor and find a good hepatologist and let him treat you. good luck
Avatar universal
Thank you all for your advices.
I will meet doctor in the beginning of December so hopefully will get some answers and
directions from him.
I decided to try Lactulose as I did not find any contradictions and side effects of it
so it seems harmless but you are right it better to do everything under doctor's
supervision. It is just I can't meet him often.
Avatar universal
Do an ultrasound, less dangerous. But I think most of your symps are post tx. I finished in May and still am not up to par. Post tx is an area were there just isn't alot of info. Definately no clinicial data. Since I completed tx(successfully) I've had an incredible cascade of symp's. I thought I had RA, low thyroid, low testosterone, OA, insulin resistance. This stuff wrecked my teeth, they are brittle and chip very easily. No one told me about any of this stuff. The lactulose will not hurt you. You can have your ammonia levels checked but that won't tell you much. We have to just hang in there. I am just glad I got rid of the virus........
Avatar universal
for the meantime avoid wheat and protein if you suspect hepatic encephalopathy
Avatar universal
I was diagnosed in 2000 with Hep C. I had the biopsy and elected not to take interferon treatment. The last 2 years I have had no health insurance. I am concerned about the progress of this condition. Are there any known clinical trials, etc in the Chicago area or other ways to get help for someone with no health insurance? I have a dull ache on the right side and definitely a little foggy brain in terms of forgetfulness and lack of focus. I also have a little touch of shortness of breath. Also do you know what pain medications or supplements that should not be taken with Hep C?
Thank you.
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