newbie

 Hi I am new here. Recently I was diagnosed with hepatitis but the type is unknown although viral has been ruled out and I don't drink alcohol. I also have chronic pancreatitis and fibromyalgia. I was wondering if anyone could tell me the progress of this disease. I have dark urine but no jaundice. I am constantly nauseous and vomiting more days than not now, my daughter has also been saying that she is concerned about how confused I seem at times. I have no idea how advanced my liver disease is as my specialist hasn't discussed stages or anything but said that inflammation and fibrotic tissue was seen at biopsy but I don't have cirrhosis. Is there a normal progression of this disease where you can roughly guess how bad things are. My daughter has mentioned transplant to me but the specialist hasn't.

Thanks

Hi, Gymbug, and welcome to the forum.  I am sorry you have been diagnosed with liver disease.  Have you seen a hepatologist (liver specialist?)  As Sue stated, it is very important that you see the right type of doctor and get a definitive diagnosis.  Ask exactly what kind of liver disease you have and what the treatments are for it.  Ask if you should pursue a liver transplant.  These are things you need to know.  There are some types of hepatitis (means "liver inflammation") that are not viral, such as autoimmune hepatitis and hepatitis caused by certain drugs.  We can't really offer you any information until you know exactly what type of hepatitis you have.  Until you find out, though, there are certain things you can do.  If you are not retaining fluid, try drinking lots of good water.  Don't drink alcohol--at all.  Refrain from eating beef.  Eat lots of fresh fruits and veggies.  Be sure to let your doctor know all medications you are taking, including over-the-counter and herbal meds.

We are here to support you and give you whatever information we can, but first we must know what you are dealing with.

Hugs,

Connie

Gymbug,

One of the first signs of jaundice is dark urine.  I learned that the hard way.  I let the dark urine go as possible dehydration.  Then the nausea and vomitting started.  Then the full on jaundice.  Once the full jaundice happened an amazing amount of fatigue followed.  I was diagnosed with autoimmune hepatitis (AIH).  The longer you go without treatment, the more you risk developing cirrhosis.  So I would insist on seeing a hepatologist (they are GI docs with a specialty in liver disease).  If you have AIH, it is a fully treatable illness and life expectancy is that of the average Joe provided you are treated.  Severe AIH has a 5 yr life expectancy if left untreated. 

Please insist on seeing a hepatologist.  Have your ANA, SMA, anti-LKM (all antibodies that will help with diagnosis) been done?  They are simple blood tests.  They should test for fatty liver, AIH, CMV, Epstein-Barr. 

Have you been on any meds or natural supplements lately?

As far as transplant goes, it's best to keep your own for as long as possible.  If you don't have cirrhosis, they won't talk to you about it.  Since you have pancreatitis, they'll be choosy on the drugs they treat you with.  If it's AIH, you'll start with prednisone as that'll help control the inflammation that's causing the biggest problem at this point.  Really, since you don't have a definitive diagnosis, I'll stress it again...see a hepatologist and please get back to us with your diagnosis.

 

Thank you all for getting back to me the info was great. I have had a lot of tests but they can't find a reason. AIH is being looked at at the moment. I have an appointment with the liver specialist on Tuesday to get the results but I can't take steroids because I get steroid psychosis. about 10-13 years ago I was very suicidal and took several paracetamol overdoses I wondered if this could be the cause but when I asked the specialist he didn't seem to think so. I am actually prescribed paracetamol to take with my morphine but I don't take it because I'm worried that it will make things worse.

They are also looking at whether the pancreatic disease is causing the problems with the liver. My blood levels ast,alt etc are between 600-1000 but I'm not really sure if thats high or if I should be worried. The dr's don't seem worried and no treatment has been started for the liver disease although I'm on several medications for the pancreatitis and fibromyalgia.

Also my periods have stopped is that normal?

Thanks for letting me vent, I'll see the specialist on Tuesday and see what he says, my daughter is coming with me as I always forget something.

GYMBUG