What do I now? - Liver & Pancreas Disorders Message Board

investigate · 04-16-2009, 02:29 AM

Hi guys,

Fantastic resource for information with regards to Liver disorders. Without your contribution non of this is possible I really appreciate the time that is put in.

My Liver condition is really undiagnosed and investigation after investigation is leading me to dead ends.

In short , I was flagged after feeling tired with elevated LFT's last September. This lead to Ultra Sound Scan and a Liver biopsy which confirmed I have a Cirrhotic Liver. I have had all of the Hep and autoimmune blood tests and all have come back negative.

I have also gone through both the 24h urine test and the 48h Penicillin Challenge test as well as had an eye test for Keiser Fleisher rings. Again its all clear.

I have also (last week) gone through an Endoscopy and they have located 4 grade 2 Varicies which have been banded. I have another appointment to go through the same again on the 13th of May.

Now I'm in the process of having myself transferred to a more specialist center for a second opinion.

Officially they have diagnosed me with Cryptogenic Cirrhosis of the liver. Obviously, this is not good enough.

So, what now?

I am fairly sure this is not Wilsons but am uncertain whether this is NASH that has lead to Cirrhosis. Would the biopsy results show this even though the liver is now scarred.

All help and support is appreciated.

Keep fighting

.

vocalist1945 · 04-17-2009, 01:39 PM

I, too, have been diagnosed with "liver damage" as the AST and ALT levels are
elevated and also my iron level is over 475. My auto-immune tests confirmed
Sjogren Syndrome which can damage or destroy bile ducts leading to inflammation and liver damage. Biopsy to come but have no idea what the problem is.
Non-drinker for life and always took care of my health. But I don't give up either.
Many, many times our drs. are so busy with TOO many patients and MISS very
important details about our case. Will keep posted about results of your case
and may learn something about mine.

investigate · 04-18-2009, 05:20 AM

Vocalist1945,

I wish you all the luck in the world. I totally agree with you on your GP point of view. We are living nations that have an ageing population so the load on our medical folk is immense. Unless you are proactive, you will be forgotten and sadly end up on some ward left to die.

Nobody can really push as hard as you yourself can. No one will understand how you feel. It's totally up to you to fight.

Knowledge is power, and having a balanced view, a challenging view keeps everyone on their toes.

I'm hoping I get a transfer soon. Don't worry, I'll be pushing like a bat out of hell.

.

vocalist1945 · 04-25-2009, 02:04 PM

Investigate:
Have you ever tried 250 mg. Milk Thistle (80% Silymarin) 3 times a day. This herb is
well known for helping the liver to regenerate. I have been taking it (the brand I am
taking is Nature's Bounty) and my AST and ALT have both come down in the number.
I don't know about the iron level as it has almost been a month since the iron has been
checked. Google "Milk Thistle" and see the hits you come up with. (buy a quality brand)
One question: You said your condition was basically undiagnosed.....and yet the
biopsy confirmed cirrhosis. Is there something else they are looking for?