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....

[gelia]

   Thank you so much for your response.  No, I have never had a liver biopsy, although I have suggested  it.  I am working with my primary care dr. who  had deferred now to my gastroenterologist,  who in turn sent me to my oncologist.  I've known my oncoogist for 9 years.  He  became my dr. when I had uterine cancer.  After my radical abdominal cancer surgery  9 years ago, I have been cancer-free ever since.  My oncologist didn't have a clue as to why my AFP is elevated.  He deals almost exclsively with women's cancers, so he suggested I get another blood test in a few weeks & sent me back to my gastro-guy. I called him & requested  a second opinion with a specialist at UCLA.  That was denied by the HMO, but they might allow me to see  a hepatologist at USC or Loma Linda.  My gastro-guy interned  at Loma Linda & said he's seen this  sort of AFP elevation  start slowly but eventurally rise to the  point that  a  patient develops liver cancer, sometimes  in months or years--but he felt it was good to find out at such an early stage so they can continue to test me.  I know he  plans  to request another PET scan in April.  He  did state howerver, that they don't see any signs of cirrhosis or  gallstones.  If cirrhosis can't be  easily detected by scans, as you mentioned, is a biopsy the best and only way to go?
   How is your husband doing?  I hope he is doing well--you sure know from first-hand  experience how scary  this is.  Did he suffer at all from pain in his right  side?  I  did A LOT when I had  hepatitis, &  I am again now.  I know my dad did, too.  Again, thank you for your input.

[Bill1954]

Pro—our posts crossed.

And… that must have been wicked pesticide; all these years and it causes grown men to obsess over pigs with wings…. :)

[Bill1954]

And as a side note, I think slightly elevated AFP marker is consistent with chronic viral hepatitis; and that you are a long way from being doomed. If this view persists, ask for a referral for consult to another specialist to calm your nerves. Some folks simply have high level of this marker, perhaps as residual from their fetal stage?

Bill

[Bill1954]

Hi Gelia,

I just briefly read this thread here, so forgive me if I’m missing something.

Non A, Non B Hepatitis is indeed now called Hepatitis C. This was changed around 1990 or so, when the Hep C virus was identified.

The path this diagnosis usually takes is a person’s primary care doctor will for some reason test for Hep C antibodies; if this is reactive (positive) they are typically referred to a GI or Hepatologist for further testing.

The specialist will run further tests to rule out a ‘false positive’ initial antibody result; this test is called a ‘HCV RNA by PCR’ test, and checks for the presence of active virus, rather than simply the presence of antibodies.

Until you know if you’re HCV RNA positive, you have not been diagnosed with HCV. Our bodies produce antibodies in response to a foreign pathogen; around 15-25
% of patients that have been exposed to the virus will go on to clear it with their own immune response; and of course, false positive antibody results are a possibility too.

Your primary care doc can order an ‘HCV antibody’ test; if this is reactive, request a referral to a specialist, and go from there. This test is an easy, relatively inexpensive blood test; no point in tying up a specialist’s office until these results are in hand.

Be sure to request copies of all test and procedure results; it will help you communicate more efficiently not only in here with us, but with other specialists if the need arises.

All the best to you—

Bill

[Proactive]

You could certainly save yourself a lot of aggravation and maybe even worry by simply calling your doctor and request/demand that you get tested for hep c antibodies, and if you have the antibobies, then an additional test call Hepatitis C RNA PCR. The second test will tell you if the virus is active, or your immune system beat it back in '83...That settles the question of Hep C or not. As I mentioned, when I was 13-14 I was using pesticides (that sweet 70's batch mix ) to kill yellow jackets, which my Dad was alergic to, I accidently inhaled some (didn't know it at the time)..Long story short, within 24 hours I was on the way to the hospital with an extremely high fever, then jaundice quickly followed..Well, my liver became inflamed (the definition of hepatitis) due to the toxins I had inhaled...hence, toxic hepatitis

"Toxic hepatitis: Hepatitis (inflammation of the liver) caused by an industrial chemical such as carbon tetrachloride or phosphorus" or any toxic substance for that matter, including pharmaceuticals.

mayo clinic link  http://www.mayoclinic.com/health/toxic-hepatitis/DS00811

The bottome line, get fricken tested for hep c and then you'll know. Ethier you will have piece of mind in knowing you are virus free, or you'll be armed with knowledge to make an informed decision on your future course of action...
Pro

[gelia]

   Thank you so much for your input & kind wishes.  Perhaps it was Hep. A, but my incompetent doctors  26 yrs. ago (even though the main dr. was  chief-of-staff at the hospital) mis-diagnosed me, calling what I had Non-A, Non-B.  Not having any records  from back then, my primary care  physician now is obviously not in tune with what kind  of Hep. I had.  I'll find a hepatologist, have tests run, & get to the core of this matter.  I  can't have my  AFP bouncing around in an elevated state while the drs. try to guess.  The fact that I had hepatitis makes the  drs. assume this is why it is  elevated &  why I am "doomed".  Also, my dad passed away 5 yrs. ago from gall bladder/liver cancer.  Again, thank you.