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 sure others will advise regarding the AFP since I'm not very familiar with that, howerever I am curious about your statesment:  " I worked in dentistry & caught it from a sick patient."  

Caught it as in blood to blood transfer?

Trinity

[Proactive]

I'm also curious, or confused. You stated you had hep c in 1983, and then stated, "After I got well" How did you get well? Did you clear the virus on your own? I didn't see you mention having undergone treatment.
Pro

[copyman]

I disagree with your doctors. Your AFP can be "slightly" elevated from HCV. And any good doctor knows that liver cancer will show the AFP results in the hundreds.
If you still have HCV see a hepatologist (liver specialist) and make a plan to rid yourself of it. If you get rid of the HCV it will greatly increase your chances of NOT getting liver cancer.
Best of luck

[gelia]

   I was the office manager in the dental office.  One of my best friends was a dental assistant. Several of us were invited to her home for dinner.  Her husband fiixd the salad, & then said he didn't feel well.  He was diagnosed with Hep. C a few days later.  3 weeks later, I came down with it.  My doctors all agreed that  my friend who was the assistant must have caught it from a patient who thought he had the  flu, but actually had Hep. C--in turn, she didn't appear to have the infection, but was a carrier & gave it to her husband.  My doctors  felt that either I caught it from her husband who had fixed the salad, or from her--we often shared food with  one another...but in the long run, they felt she  had caught it while working in someone's mouth who was sick.
   In reading about Hep.C, I realize it doesn't "fit" my  kind of Hepatitus, but my doctors all tell me that non-A, non-B is now Hep. C & that's what I had.  Incidentally, I never had a blood transfusion or used drugs, etc.
   As for how I got well, back in 1983, all they gave me was Tylenol &  put me on an antibiotic for a couple of weeks.  I had  a fever of 105 & was put into the hospital for a week.  When I say, "after I got  well", I  meant after my symptoms went away(raging sore thoat, horrible body aches & pains, nausea, yellow eyes & skin, etc.).
Gelia

[gelia]

After reading what I can find on the internet, I am inclined to agree with you.  I have asked my 3 doctors if it could be associated with my hep. C, & all of them keep telling me "no".  I have asked to see a specialist & am currently waiting for my HMO's approval.  Thanks for your input--it confirms what I'm thinking.
Gelia

[Proactive]

The odds of being infected with hep c in the manner you suggested seem very remote to me, keeping in mind that hep c is passed "blood to blood" Have you actually tested positive for hep c? I had "non a/b hep when I was younger, ended up in the hospital for 2 weeks...but it wasn't hep c, it was toxic hepatitis.

[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.

[gelia]

   Thanks for your input.  Obviously pople who know a whole lot more about hepatits than I have spoken out to say that I couldn't have had  Hep C as it is not transmitted  in any other manner than blood-to-blood.  My doctor made  it sound  so simple...just like some people are  exposed  to a cold, a few will catch it & others will not.  My  mom & dad & boyfriend were with me all the time & none of them caught it.  It sounds like my current doctor's ignorance  has labled me with Hep C.  Do you know how one catches  what  was termed Non-A, Non-B?  I ALWAYS felt that the  doctors 26 yrs. ago didn't have a clue as  to what I had & finally took a guess since  by eyes were  yellow & so was my skin.  It's turning out to be a "guess" that has  wasted a lot of my time worrying about it.  As with all  HMO programs, I'm  going to have to DEMAND some further testing.  I know, for a fact, that I never had ANY kind of transfer of blood from anybody, sick or not.  

[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.

[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

[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

[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]

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…. :)

[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.

[gelia]

   Thank you so much for your input.  My doctor ordered a complete liver panel & all of that came back fine.  How extensive is a PCR blood test--in other words, is it only used to detect hepatitis virus & determine it's type, & how active it is or isn't?  I have a lab request sheet from my dr. for my next AFP test, & I see  they do not offer a PCR test.  They offer: 1) lipid profile, 2) liver/hepatic function, 3) AFP, 4) Hep A Ab IGM, 5) Hep A Total Ab, 6) Hep B Core Ab IGM, 7) Hep B surface Ab QNT, 8) Hep B surface Ag w/reflex fonfirmation, 9) Hep C Ab+.  Are any or all  of these part of the PCR test?  You sound knowledgeable about this, so I assume you or someone close to you has had it done. & therefore you'll know the answer.  Agan, thank you so much.  

[jdwithhcv]

The test you need to have them order is HCV RNA by PCR.  This will determine if you have a viral load, and thus that you are infected with HCV.  If you have detectable virus, then you will need to know its genotype.

Good luck.

[gelia]

   I will get tested for hepatitis C so I can get this settled once & for all. However, can Hepatitis A  or B cause an elevated AFP many yrs. later???  Toxic hepatitis  sounds more like what I  had--& I did have a new house with a new lawn that I sprayed with all kinds of stuff to keep pests out, & cause everything to grow.  I would think that maybe that was what I'd had, but what about the patient who had come to our office & been worked on & later fund out he had Hepatitis, & my girlfriend's husbaand who  had it?--All coincidence?   And, about 3 weeks after I was diagnosed, a  friend of mine at our  dance school came down with it.   However, her dr.said she got hers from sushi!
   Thanks so much  for the mayo clinic lnk--I will ck. it out.

[gelia]

    Hi Bill--you sound very well informed & I really appreciate your input.  Was your Non-A, Non-B hepatitis transmitted blood-to-blood?  Mine definitely wasn't.
    I can get my PCP to requeest a HCV RNA by PCR test & if he has no idea  what  I'm talking about, MAYBE my gastro-guy will...however, what I think I TRULY need is a hepatologist because my gastro-guy primarily understands & deals with colonoscopies & endoscopies & all the problems associated  with negative results from them.  I know he is the one who is supposed to handle all the liver questions,  but if he just isn't knowledgeable enough to deal with that part of his practice.  I think it's time for a  change or at least a 2nd  specialist.
   Oh, & thanks for the heads-up about getting copies of all my test results, etc.  I've been doing  that & it really makes a difference.  Thanks again.

[gelia]

    Thanks so much for your response.  By your name, you obviously are speaking from experience.  How  difficult is it for them to determine the genotype once the HCV RNA by PCR comes back positive  for HCV?  Is that another blood test or  something more  extensive?  Thanks so much for your input.