Liver biopsy and no answers!

[Souppie]

Sorry I have not replied back to anyone but I have been having a pity party. All the anxiety and being so upset and afraid over the dam biopsy, I finally find the courage to go thinking I will finally have my answer. NOTHING....a big fat nothing. My biopsy only showed some abnormalities, nothing diagnostic. Yes, I am happy but......

I did not want to have AIH but knowing I am sick, knowing something is wrong I accepted this based on what the doctors said. My spleen and liver are massive, my belly is swollen ( no fluid) , I feel so out of sorts and I don't know what to think now.

The GI doctor wants me to go back to the hematology doctor, and look more into my blood for abnormalities. I have had it with all of this.

I had a positive coombs test and tested positive for porphyria. I thought I would throw that out there and see if anyone has info on this. The doctors blew it off because they ALL said it was my liver!

I also have a strong anti smooth muscle antibody showing up in my blood. Do I just dismiss this finding? I feel like I am going crazy thing about all of this.

The doctor said "well it will take some time to figure this out" I thought I was finally going to have my answer and get on with life. I feel like I am back to where I started.

So frustrated, I had to vent.

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That's great news, you don't have cirrhosis so consider yourself lucky. Also, have them to check your iron levels because we are learning that can tell a lot about what is going on.

[Kristian]

Hi Soupie,

Unfortunately that can be the case. I was in a similar position. The biopsy confirmed cirrhosis in my case but what was causing it just couldn't be determined. It was clear something was going on they just couldn't identify what. It took the pathology after my transplant to finally confirm my diagnosis. You may be similar, in that it may take time to get you a final diagnosis. That is just the way it is sometimes unfortunately, you just have to be patient with it.