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Elevated AFP

   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....
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1117750 tn?1307386569
remind me to never order a salad in America!
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Avatar universal
"And… that must have been wicked pesticide; all these years and it causes grown men to obsess over pigs with wings…. :) "

LOL!  When Larry Ellison calls me offering big bucks for my flying pig, so that he can place it atop the mast of his America's cup boat--we'll see who has the last laugh!!!..............;^)

Best of luck Gelia, keep us posted..
Pro
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Avatar universal
Oops, I misread your earlier post and thought you already had the antibody test.  Certainly have that first, you may not need any further testing.  Good luck.
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Avatar universal
I would agree with Bill and the others that PCR at this stage is overkill.  I would get your antibodies done on each of Hep B and Hep C.  I really don't know how it works on Hep A but you might as well rule that in / out.  With Hep B, do a little homework first as one of the antibodies, and I believe it's the surface antibody but I wouldn't quote me on that, if it comes back positive it's a good thing as in if you had Hep B at one time, it's cleared and you're both immune and non-contagious.  That's getting a bit ahead of the game, I just don't want you getting upset at any positives until you understand what it infers.

If you get a positive Hep C antibody, then yes - next stage is a PCR that will determine if you have any viral load.  In about 15 - 20% of the cases, Hep C clears on it's own without any treatment and a PCR will tell you if you are one of the lucky few.

So...positive for antibodies on any of this does not necessarily imply that you HAVE Hep B or Hep C.  

Good luck with this.

Trish
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419309 tn?1326503291
You got some great advice from some very knowledgeable members here.  Hopefully some additional testing will yield you some answers.  My own experience with my husband’s care the last few years has demonstrated to me the importance of finding the right specialist – at one point my husband was referred to an oncologist who had NO experience with liver cancer – it can be frustrating when the doctor seems to know less about the disease than the patient!  

Sounds a bit like you’re being shifted around, playing a bit of musical chairs, but I hope your HMO approves the referral to a hepatologist.  I have to say, like Bill,  I too am very uncomfortable with your gastro’s doom and gloom comments about developing liver cancer – the occurrences of elevated AFP in the absence of tumor is actually far more prevalent than the occurrence of high AFP because of liver cancer.  Undoubtedly it’s good that he’ll be monitoring your AFP levels, but I don’t agree with his conclusions.  (You didn’t mention MRI, which is also an option to consider since it also has good sensitivity in detecting tumor, if that continues to be a concern.)

If it turns out that you are diagnosed with hep c, the next good step would be a liver biopsy to determine the extent of damage.  My husband is proof that imaging can miss cirrhosis.  He had ultrasound, CT Scans, and though they could see the massive tumor, neither was able to visualize his extensive liver damage.  (His Stage 4 liver cirrhosis was conclusively diagnosed when he had his surgery and they removed the left lobe of his liver for examination.)  Although not the only option and certainly not perfect, liver biopsy is considered the most accurate method of assessing both inflammation and/or scarring in the liver.

It’s great to hear that you continue to be cancer-free; my husband and you definitely have that in common – today, he too is cancer-free since his major abdominal surgery three years ago.  He actually had no abdominal pain or symptoms despite the fact that the tumor was 6x12 cm  – we happened to have been fortunate enough at the time to have a primary care physician who was top-notch, and his liver cancer was diagnosed as a result of work-up after a near heart attack.   It was a difficult and scary time, but we made it through to the other side.

Thanks for the good wishes, and the same to you!  And if you find you’d like to dig into more information about hepatitis c, in addition to the wonderful Janis & Friends site, you might also find some useful information here:
http://www.hcvadvocate.org/
Let us know how things turn out for you. ~eureka
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87972 tn?1322661239
Gelia, I fully agree with both GreatBird and Trinity; the HCV antibody test should precede any PCR testing, regardless of how or who pays for anything; these are expensive and valuable resources, and they should be performed in the correct order.

One more webpage that will help you understand this better; we use an alphabet soup of abbreviations and acronyms in here. This should help you decipher these pages better; this page is available in a box in the lower-right side of this page titled ‘most viewed health pages’, or you can click on this link:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

Happy researching :o)

Bill
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Avatar universal
   Fortunately, my HMO has never found the need to approve any blood test by  PCP  has ordered for me, so I  should be able to get the PCR.  However, I will keep in mind that if push comes to shove, I can ask for an antibody test to finally get some ACCURATE info!!  Thanks so much  for your very knowlegdeable input--it helps so much!
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Avatar universal
I agree with you GreatBird.  The antibody test is much cheaper and the HMO would be more likely to approve that over a PCR.  

I would use a antibody test first since geila does not know exactly what type of hepatitis she may have been exposed to or if it is viral hepatitis and she did state they do offer the antibody test according to her lab requisition.
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9648 tn?1290091207
My understanding is that a diagnosis of non-A non-B hepatitis simply meant someone had hepatitis that wasn't A or B. Now it is true that non-A non-B came to be known as hep C, but if you had other toxic exposure it's very possible you didn't have Hep A, B, or C.

All  you really need to do is have an antibody test to see if you ever had exposure for hep C. If that test comes back positive you can be further tested to see if you have the virus.
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Avatar universal
   WOW--what a great website!  I have only opened a couple of the topics & I can already tell this is going to be of tremendous help--THANKS SO MUCH!!

Gelia
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87972 tn?1322661239
Gelia,

I haven’t seen this mentioned in the thread yet; if you haven’t seen this, please take a look at the site “Janis and Friends’; I’ll link you to their page for newly diagnosed:

http://janis7hepc.com/have_you_been_just_diagnosed.htm

Scroll down that page, and be sure to review any topics of interest in the column in the right-hand side of the page titled ‘other HCV information’; this covers topics like biopsy, blood tests, fibrosis, etc.

This should make things much easier for you to understand… it helped me immensely when I was initially diagnosed.

Best to you—

Bill
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Avatar universal
   HI again!  I will take your  exact wording to my doctor.  Actually  the "Hep C Ab+" test that I mentioned to Trish hasn't been ordered...it's just a test that can be requested from the lab, as  can any of the ones I mentioned to her.  The only test actually requested on the lab slip I have right now is another AFP.
  You've  given me so much great  info & encouragement--thank you so much.  I'll let you know the outcome.  

Gelia
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87972 tn?1322661239
Hi again Gelia—

My Hep C (HCV) was diagnosed in 2004; and yes, while I’ll never know for certain, I had a history of sharing IV drugs so chances are my exposure was from a typical source. There is a percentage of patients that don’t fit into standard risk categories, and might never know where or how they acquired the disease.

The HCV RNA by PCR can be ordered by your doctor to include genotype testing; the most cost efficient way of doing this initially is to order a ‘HCV RNA by PCR with reflex to genotype’; this language will instruct the lab to conduct a PCR test; then, if and onlyh if this test is positive, they will run the same sample for HCV genotype. This eliminates the need to draw blood twice, and saves the draw fee at the lab.

The HCV RNA by PCR test should only be ordered once a patient tests positive/reactive to HCV antibodies; in your comment to Trish above, this has already been ordered… it is the ‘Hep C Ab+’ you already mentioned.

Good luck; yes, a hepatologist is generally better informed as to the disease than a GI doc; however, most GI docs are capable of managing simple cases of HCV. It might require months of waiting time to see a hepatologist; no reason a GI doc can’t get this moving along for you.

Take care—

Bill
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Avatar universal
    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.
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Avatar universal
    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.
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Avatar universal
   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.
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Avatar universal
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.
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Avatar universal
   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.  
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Avatar universal
   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.
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87972 tn?1322661239
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…. :)
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87972 tn?1322661239
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
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87972 tn?1322661239
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
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Avatar universal
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
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Avatar universal
   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.
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