Elevated AFP

[gelia]

   I am a 62-year old female.  In July-August, 1983, I had a very serious case of (what they now call) hepatitis C ( which they then termed  non-A, non-B hepatitis) for 6 weeks & was in the hospital for a week.  I've never been so sick.  So often websites say  that symptoms for hepatitis  C are  mild to moderate--this wasn't the case for me.  I worked in dentistry & caught it from a sick patient.  After I got well, the dr. did a scan & said my liver looked fine.
   Last October, my primary care  dr. sent me for regular blood tests, including an AFP test.  It came back at  15.3 (with normal being  0-10).  I had  a  CT scan & it was clear.  In Dec. I had another AFP blood test   & it came  back at 16.7.  I had a PET scan &  it came back clear.  In January I had  another AFP test, & it came back at 18.4  So, I had  an Ultrasound  & it came back clear.  Today I  got  the results of the latest  AFP & it is now  16.5.   All of my  doctors  are totally  stumped.  This  merry-go-round has  me  & my husband very upset  because our doctors just don't have any answers.  They say that my AFP shouldn't be elevated from hepatitis C  after all these years.  But, my gastroenterologist thinks I will develop liver  cancer, with time.  He has seen this before  & says  that the liver cancer tumors can take months  to years  to show up.  He had one patient whose AFP went  up slowly like mine, & after 5  yrs., she developed 3  tumors in  her liver  suddenly, all at once.
   Has  anyone had a similar  situation or  know  why  an AFP  would go up & down?     Incidentally, I feel fine & have not been ill, but I  do have pain most of the time in my right side  within  the ribcage area.
   I would really appreciaate hearing from anybody with any thoughts or knowledge about an elevated AFP.


This discussion is related to Alpha Fetoprotein questions....

[Trinity4]

I'm sorry, but your doctors are incorrect.  I've never heard of catching hepc from eating food that an infected person has handled and if you read the documentation and studies about hepatitis c you will find that to be true.  No hepatologist or GI would ever tell his patient he could have possibly contracted hepc from an infected person who handled the food they ate.  If that were the case, all of our family members would be infected with hepatitis c as well.  Many people work in the food service industry who are hepc positive.  Infected persons handling food is not a mode of transmission and people who have hepc are not considered "carriers".  Either someone has the virus or they don't whether they are symptomatic or not.  

[Trinity4]

Forgot to say, Hepc is transmitted by blood of an infected person entering the bloodstream of another.  Whether it be IV drug use, toothbrushes, nail clippers, accidental needle sticks and so on, it still must be blood to blood.  Hepc virus can not be transmitted any other way.

[copyman]

Ok now something isn't right. There is NO way you got Hepatitis "C" from a salad !!! Even if the dressing was made from Hepatitis C blood. So forget about that scenario. Any doctor that would say that is incompentent.

The only type of hepatitis that you could get from food is Hepatitis "A". Maybe that is what your doctors are talking about?

Bottom line is you still need to see a hepatologist to sort this all out.

Best of luck

[eureka254]

As a number of the posters noted above, your doctors do not seem very well-informed about hepatitis c.  Hepatitis A is food-borne, NOT hepatitis C.  Many individuals who have hep c don't really know how they were infected and can only make 'educated guesses' -- however, because it is a blood-borne disease, the fact that your doctors are suggesting that you might have contracted it eating food prepared by someone with hcv is incorrect (and, imho, highly irresponsible).  Your '83 symptoms do sound like the "acute" phase of hep c -- some people experience fever, jaundice, etc. very similar to what you described when first exposed.

The physicians who are stumped by your AFP changes -- are they hepatologists or gastros?  It's not unusual for family practitioners or primary care providers to be unfamiliar with hcv, but most experienced hepatologists (liver specialists) are familiar with the fact that it is not unusual for people with active hcv to have slightly elevated AFP levels, especially so when the disease has progressed to cirrhosis.  

It sounds as though your doctors have been thorough in following up the high AFP with imaging studies, but I wonder if you have had a liver biopsy recently?  Though the scans you mentioned are sensitive for tumor detection, liver damage can be difficult to assess accurately by imaging studies, and your higher than normal AFP may be reflective of some liver damage (especially considering that your length of infection is possibly >25 years).  

As for your question about AFP as an indicator for liver cancer, the general guideline is AFP levels >400 IU/ml may be considered to be 'diagnostic' of tumor.  And, it's important to note, even within the hcv population with advanced disease, the frequency of liver cancer is ~10%, so I do not agree with your gastro -- on what does s/he base the thinking that you will in time develop liver cancer?!?

When my husband was diagnosed with liver cancer in 2007, he was asymptomatic (most liver cancers show no symptoms until late stage), but his AFP was >2,000 IU/ml.  Since his surgery his doctors monitor his AFP regularly -- as example, his AFP 3 months ago was 45.5 and his CT Scan found no tumor. Hope that helps. ~eureka

PS:  One not uncommon finding among people with active hcv is gallstones-- if you're having significant abdominal pain, the likelihood of gallstones is much higher than the likelihood of cancer! :)

[Trish77]

I'll echo that I think you're confused about what kind of Hepatitis you have and/or how you contracted it.  As the others have said, Hep A is the food-borne Hep.  Hep C is transmitted only blood to bloodstream transmission.  Even if you got some blood on your skin or in your mouth, it wouldn't infect you UNLESS there was an open wound of some kind that allowed the infected blood to enter your bloodstream directly.  Possible you contracted Hep C ...but NOT via the food.

The evidence that you cleared Hep C is NOT that your symptoms went away, it's that you have no evidence of viral load - detected virus in your blood.   I would suggest you go for a PCR blood test to determine if you have actual Hepatitis C viral load and NOT just antibodies.  You need to get a better handle on what exactly it is you do or don't have.  

Trish

[gelia]

    Thanks so much for your input.  What is toxic hepatitis? What  type is associated with that?   I've never heard of it.  Anyway, I never thought I had Hep C--but when I discussed having had non-A, non-B  hep with my primary care physician, he  told me to "get with it"--"it's no longer "non-A, non-B, it's now called hepatitis C".  He indicated that I was showing  my age by referring to what I had as being "non-A, non-B".  He was not my doctor 26 years ago & wasn't  around when I was diagnosed.  I was originally told I had mono until I ended up in the hospital (in 1983).  Then, they ran all kinds of tests & finally decided I had non-A, non-B hepatitis.  No, I haven't been tested for hepatitis C, but I'm going to find someone who will test me & get this mystery out of my life.