Seeking Advice

Cathleen Mary

Last summer, I was diagnosed with autoimmune hepatitis. This seems to be complicating my CRC follow up. My CEA, previously dependable for me, appears no longer so. I have been told my slowly rising CEA is due to the hepatitis. Scans of my liver are also confused by the hepatitis. I am concerned that what I previously depended on no longer serves me well and the hepatitis will mask a recureence. I do have a good team at Mass General, including a liver speciatiist. I am still learning about autoimmune hepatitis. Am I overreacting? Any advice or questions I should be asking?
Thanks so much...I have come to rely on this wise, experienced, and helpful group.

Cathleen Mary

Lovekitties

Dear Cathleen Mary
So sorry to hear of this complication. Can you tell us how they determined that you have autoimmune hepatitis? From the little I have read it seems the only sure way to know the difference between this and mets to liver is with a biopsy.

Are you being treated for AH? If so with what?

I can certainly understand your concers regarding the reliability of tests given this added issue. I am glad to hear that you feel you have a good team of docs working with you on this.

I wish I had answers or suggestions for you, but am woefully ignorant of this subject. Perhaps with a bit more research I can find out more.

Prayers for you as you move forward,

Marie who loves kitties

Cathleen Mary

Lovekitties said:

Dear Cathleen Mary
So sorry to hear of this complication. Can you tell us how they determined that you have autoimmune hepatitis? From the little I have read it seems the only sure way to know the difference between this and mets to liver is with a biopsy.

Are you being treated for AH? If so with what?

I can certainly understand your concers regarding the reliability of tests given this added issue. I am glad to hear that you feel you have a good team of docs working with you on this.

I wish I had answers or suggestions for you, but am woefully ignorant of this subject. Perhaps with a bit more research I can find out more.

Prayers for you as you move forward,

Marie who loves kitties

Thanks, Marie. Yes, the

Thanks, Marie. Yes, the autoimmune hepatitis was diagnosed through a liver biopsy. A liver biopsy was done because of elevated CEA, LFTs,. They have mentioned doing a liver biopsy every year or two which may mean you are quite right....it is the only way to differ between the hepatitis and mets. Not sure; this is all knew to me. The autoimmune hepatitis, in and of itself, is pretty overwhelming. I appreciate your response.

Cathleen Mary

maglets

Cathleen Mary said:

Thanks, Marie. Yes, the

Thanks, Marie. Yes, the autoimmune hepatitis was diagnosed through a liver biopsy. A liver biopsy was done because of elevated CEA, LFTs,. They have mentioned doing a liver biopsy every year or two which may mean you are quite right....it is the only way to differ between the hepatitis and mets. Not sure; this is all knew to me. The autoimmune hepatitis, in and of itself, is pretty overwhelming. I appreciate your response.

Cathleen Mary

sorry
Oh Cathleen Mary....so sorry to read this news. I too know nothing about AH but I wanted to drop you a note to say I will be thinking about you and sending a prayer or two.

I am sure this news must be very difficult to absorb......

best love,

mary margaret

dmj101

Cathleen Mary said:

Thanks, Marie. Yes, the

Thanks, Marie. Yes, the autoimmune hepatitis was diagnosed through a liver biopsy. A liver biopsy was done because of elevated CEA, LFTs,. They have mentioned doing a liver biopsy every year or two which may mean you are quite right....it is the only way to differ between the hepatitis and mets. Not sure; this is all knew to me. The autoimmune hepatitis, in and of itself, is pretty overwhelming. I appreciate your response.

Cathleen Mary

Cathleen Mary, I agree with
Cathleen Mary, I agree with Mary Margret.. what is with the sisterly names I keep reading tonight..
I wanted to say I will look into this I have never heard of this before..if I find anything I will let you know..
Sorry it must be fustrating to have little knowledge of what you have.. take care...

LivinginNH

Hi, try to get Dr. Kenneth
Hi, try to get Dr. Kenneth Tanabe for any liver surgery at MGH - he's one heck of a surgeon, and known world wide
Will chat more later by PM.

Luv,
Cynthia