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.
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.
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
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.).
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.
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.
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.
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.
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.
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! :)
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.
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.
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.
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.
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...
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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:
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:
Let us know how things turn out for you. ~eureka
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.
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