Hep C rollercoaster

[pierrot]

Hi, all.
About two months ago I posted about my positive HCV result. A week or so later, I posted that it turned out that it was false positive.
Today, quite accidently I found out that I was either misinformed or misunderstood (the former, I am sure of). It turned out the second test was not for determining whether the first test was false positive or true positive. It simply showed the level of something (I'm not exactly sure), and the nurse told me that I was fine because it was low or something.
I had another blood test, but aparently the same test I had the first time. After doing some internt search, I asked my doctor to do RIBA test (which I understand to be definitive test for positive/negative confimation), but she didn't know what I was talking about.  
I'm very confused now and back to the uncertainty. I just want to cry.
Moreover, my doctor's explanation about test results didn't enlighten me at all, so I am asking your help.
I had reactive result for HCV antibodies. RNA test was 1.70  (I'm 34 years old female)

Thank you so much.

PS: Also I was planning to study to become a nurse, but I suppose that's out of question if I have HCV.

[niceguy2007]

relax, one thing at a time.

RNA means the actual HCV virus in the blood.

1.70 what?  KIU? or millions of IU?

RNA means viral load, as far as i know.  1.70 could mean 1700 IU/ml which is a very low viral load.  this means u have a good chance of clearing with treatment.

u need to post more informaiton on the RNA viral load units.

[pierrot]

Thank you so much for fast reply.
I don't remember units, but above 1.70, it read < 50, which seemed like a some sort of benchmark.
Do I need hurry about treatment?

[niceguy2007]

I'm still confused as to whether you really do have  a positive RNA test.  
you need to give us the units.  if you're not RNA positive, you don't have to do treatment at all.

[rochammer]

Pierrot

“It simply showed the level of something (I'm not exactly sure), and the nurse told me that I was fine because it was low or something.”

The first test if for antibodies which was positive. The second test is for virus load PCR which was <5 .

The question you need to ask your doctor is. Did I clear the virus on my own?
It sounds like you did which means your body fought it off. Only about 15% of people do so if you did you are very lucky.

Rock

[Kalio1]

It's a shocker to find out you have HCV, we all know the feeling. try not to jump forward to it meaning you can't become a nurse, that isn't true. Don't be in a rush, give yourself time to learn all about it, learn about your particular condition and your options. Many people have HCV and really don't have any impact and have lived with it without damage, it's likely you are one of them! On a forum like this you will find more people who HAVE sustained some measure of damage, but don't let that fool you into thinking everyone who has HCV ends up with liver damage or other issues you see on the boards. There are basically two schools of thought, one is, when you are diagnosed you should treat it and try to "cure" yourself of it. The other is to adopt a "wait and see" position. You have to determine just where you are before you can even deal with that. You will need to learn all you can about your condition and this disease first.The only treatment available today is a course of Interferon and Ribivirin. Your success with treatment is influenced by your genotype and your condition and other factors. It is a "silent killer" disease, so you can feel fine and also have liver damage, others feel lousy yet have no liver damage. It's all over the map. I find the ClinicalOptions.com site to be extremely informative both in text and videos and well worth registering, but you can look through the archives on this site or Janis and Friends or many others and find lots of info too.
Your doctor should explain to you all about the test in a way you can understand, I'd try to find one that can. It is their job to inform you, it isn't like everyone just naturally understands this stuff! Your doctor is key when you have HCV as is your own independent education on the subject. It is an evolving disease situation with a variety of opinions. There is a lot you will need to learn and as you do, it will help to empower you to deal with having this disease and how you will manage that if you have a doctor who is well informed. Do you have symptoms and that is why you tested for it or?
You want to get copies of ALL your test results so you can see the numbers yourself. It will be foreign at first but soon you will learn all about your blood!
Sounds to me like step one, you tested positive, then had a PCR DNA test that would determine your viral load, that is the usual case, first the pos/neg test, then the test to find out the ggenotype and viral load. Your genotype affects your chances of success should you decide to go through treatment so it's quite important.
Ask the doctor to explain it or refer you to someone who can.You want a doctor who has had a lot of experience treating HCV because there is a lot of misinformation and doctors who aren't up on the latest.was it a primary doc that did the test? Most people with this disease see a Heptologist or a Gastroentrologist, you might want to try to find a good one. Two things are discovered on a PCR DNA test, your viral load is one and the other is your genotype. Did the doc tell you your genotype?
If you were told that this viral load number being "low" meant you have a mild case or something that part is untrue. Your viral load does not tell you your condition and it is not a gauge of much other than how much virus they see in your serum at any given moment, it is constantly changing number. You could test it in the morning and again in the evening and get vastly differing readings, that number isn't very relevent unless you are treating with Interferon/Ribavirin.
Your tools to gauge what your status is now are a variety of blood tests that can give clues as to liver condition and a liver biopsy is the "gold standard" for determining liver condition but don't think about that just yet!
What you will need is more information and a lot of it, I'd start by getting copies of all your bloodwork test results. Give yourself time to take it in and get over that initial shock/fear of finding out you have HCV.
It does sound like your doc did all the right tests, do you have another appt?

[jmjm530]

After re-reading your post and "Rochammer's" it appears you haven't treated yet. That doesn't alter my advice, above, HOWEVER as Rockhamer states, you already may have the correct tests done.

Obviously your doctor isn't explaining things clearly to you. So my revised advice is that before doing anything else, get your own hard copy of ALL testing done to date by these doctors. Then ask your doctor to explain to you whether or not you have the virus. Also, feel free to post the results here  for more input. Lastly, if you're still at all confused, bring all the paperwork to another liver specialist (hepatologist) and have them explain it to you.

-- Jim

[jmjm530]

Sorry about all the confusion. To keep it very simple:

(1) The antibody test is the wrong test to order. Just because it's positive doesn' t mean you have the virus.

(2) Tell your doctor you want the "Heptimax" test by Quest Diagnostics. If your doctor doesn't know the test, all they have to do is write the word "Heptimax" on a prescription form and then you bring the prescription to the nearest Quest Diagnostic Center.  You can find the nearest center here:
http://www.questdiagnostics.com/?gclid=CJv1vv642o0CFQuJgQodCmNdZA
Then make sure you get your own copy of the results as well as the copy your doctor gets.

(3) If for some reason your insurance won't cover Quest labs, ask your doctor for a viral load test with a sensitivity of at least 50 IU/ml and ideally 5 or 10 IU/ml. If your doctor doesn't understand what you're talking about, see another doctor.

All the best,

-- Jim

[FlGuy]

I think I remember your original posts.  The context of that, and the results your provided then, showed that one result showed less than 50 and less than 1.70.     The 50 is iu/ml limit of the viral load test and 1.70 is the log equivalent - showing you as virus undetectable.  The other test result was under 5 iu/ml and it's log equivalent which was something like 1.5.   So, based on my recollection you seem to imply that you have 'no detectable virus' as the result of those two viral load tests.  That is a good opening question in your next conversation with your doc, the current doc or a new one.  You need to understand results of important tests given to  you by a doc who can communicate effectively.

[jmjm530]

If  FLGuy's recollection is correct, then it appears you don't have Hepatitis C, just the antibodies. This is good news. It means you do not have anything to worry about. But to confirm this I again strongly suggest you get your own copies of all the tests to help verify things either with this doctor or another doctor -- and from what you say, probably another doctor who should be a liver specialist (hepatologist). I doubt if my GP would be able to make heads or tales of my viral load test results or even which tests to order.

-- Jim

[pierrot]

Thank you for all encouraging words.

Here is even more confusing part. I just got result of Hep C AB EIA SERUM (which I believe is for HCV) from hospital at which I volunteer faxed to me, and it's negative. I had this test on June 22, 2007 which is after the positive test result in May. At the I did the second test, I didn't ask about result because I thought incorrectly that the first one was false positive.
Today I had anonther blood test, which is going to be another EIA test, that is, a third one.  

As for RNA test, I asked a nurse and she said the unit is IU/ml.
So, the lab result showed <50 IU/ml in the first line,  and below that 1.70 IU/ml. The nursed described it as titre being between 1.70-50. She said that I have HCV, but not the kind that I need or can get treatment.

[jmjm530]

Pierrot: She said that I have HCV, but not the kind that I need or can get treatment.
---------------
Your nurse either doesn't understand, or is explaining things incorrectly. It *appears* you are non-detectible via RNA viral load test, which is the only test that matters at this point. Why do they keep giving you the EILISA test? It will tell you nothing useful at this point. You really need to collect all your test results and see another doctor to go over things. Your current approach will just drive you crazy.

-- Jim

[FlGuy]

The 'RNA Test' sounds like Quest Diagnostics' 'HCV RNA Quantitative'.  The iu/ml means 'how much virus (international units) are found in a ml (milliliter) of your blood.  That test can 'count' to as few as 50 in a milliliter of your blood.  the '1.70' is just another way to express the '50'.  So, really, you were below 50, which is to say that you were also below 1.70 which is to say that the test could not find any virus in your blood.    The other test, down to 5 iu/ml or 1.5 , was even more sensitive than the other one that went down to 50.  Having had two viral load tests (one very sensitive) and both showing undetectable are thought to be reliable and redundant results.  The key is to understand, from a doc who knows these reporting results,  if that's what the tests really portray.

The nurse seems to be causing a little confusion in conveying results to you.

[FlGuy]

By the way,  'Also I was planning to study to become a nurse, but I suppose that's out of question if I have HCV'.  I don't see why, even if you had hcv,  it would be limiting factor in education or career choices.  One of the country's leading hepatitis doctors was infected with hcv at one point and he continued to practice and, I think, teach.

[pierrot]

FIGuy,
I did do RNA test at some lab, which I think was called Quest though I'm not sure and it read 'quantitative'. But I don't know about "the other test, down to 5 iu/ml..." you meniton. I only had one RNA test that had result of <50 and 1.70 (this one wasn't written, <1.70).
Is this 'the other test' something that I should get? What is it called?

Despite everyone's very generous efforts to help me, I am still confused about my test results. What does it mean to be "non-detectible via RNA test"? What test do I need to get to know for sure whether I am postive or negative?  

To summarize, I had postive EIA test sometime in May, then had RNA test which had <50 and 1.70 IU/ml reading, and then in June, had a negative EIA test.  And still, I'm not sure what all this means.

And maybe I should mention that shortly before 1st positive test, previous test showed that I had elevated level of bilirubin. Second test was okay, but it was from this test (or tests) that I got the news that I had HCV.

And maybe I should mention some of symtoms I've been having - recently I often had headache, sudden feeling of being hot (hot flash?), constipation

[James43]

(II) What does"negative", "not detectable" mean?

The meaning of "not detectable" or "negative" depends on the test used.

The most sensitive test is normally the qualitative PCR test. In the laboratory, to which I go, the detection limit for this test is 100 eq/ml. That means that any viral load below 100eq/ml would give the result  "negative", and any viral load above 100eq/ml would give the result  "positive" . But, in this qualitative test, 'positive' can mean everything above the detection limit,  110eq/ml as well as 11,000,000eq/ml - it doesn't give you a number for the viral load.

The quantitative HCV RNA test via  *PCR*  is often somewhat less sensitive - a detection limit of 200eq/ml  in the case of the laboratory, to which I go. But as the name says: It measures the quantity of viruses in your blood.  It has the advantage to give you a number for the viral load. - There is also a cheaper  *bDNA*  test. But its much less sensitive, with its detection limit being at approximately 200,000eq/ml.

So, when you are " negative ", maybe there is no hepatitis C virus in your blood. But maybe also you do have hepatitis C viruses in your blood, but the number of viruses is lower than the detection limit of the test. -  In clinical trials, ' negative ' nowadays normally is defined as less than 100 Eq/ml.

http://www.hepcprimer.com/tests/pcr-1.html

I'm new to this, pierrot, but might you have had the quantitative HCV RNA test? And results showing the virus at levels below detection limits? Which I would think to mean below the level at which you need to get treatment.

[pierrot]

FI Guy, jmjm, James and everyone, thank you so much.

What does quantitative RNA  of 1.70 IU/ml and negative result of second EIA test mean? Or do I need more test like qualitative RNA, which I understand to be more accurate thanks to you? Since I do have 1.70 IU/ml viral load, does that mean that I do have HCV, or does this mean that I have something between 0 to 1.70 IU/ml, thus may or may not have it?

As for being nurse, I believe that one needs to have some kind of health clearance. In any case, the hospital where I volunteer told me not to come while l clear this up. Howerver, they told me to call someone who may help me maybe somehow (I just don't know what this person does). So I may get more answers on Monday, but right now I'm quite confused and impatient to understand what all this means. Thank you for your help.

[Jakied]

Pierrot, did you ever have the confirmatory "Riba' test for Hcv antibody?  The screening Elisa test and the confirmatory Riba check only for antibody, NOT Virus.  If the screening test is a 'weak' psotive (meaning <3 on the signal ratio) there is a good chance the screening result is false +.  The Riba (Recombinant ImmunoBlot Assay) is VERY specific for Hcv antibody.  The testing flowchart says a + screening test and neg Riba means a neg outcome for antibody.

From what I can understand from your posts, you have a weak + screening test and a neg Pcr, which says you may have antibody but no virus.  I have a feeling if you have a Riba test, that will come out neg, which would mean you have no antibody and no virus.  

[pierrot]

I made a mistake with Signal tp Cut-Off. It actually reads:

*Signal to Cut-Off                                  2.94       H                 or = 1.0 and <8.0. The CDC recommends supplmental testing such as RIBA or NAAT(nucleic acid amplified testing) for confirmation.  

(However, doctor instead ordered HCV RNA titre.)

[pierrot]

Jakied, I never had Riba test.
I finally got all the results faxed and here is the situation:

4/18/07 result reads like this:
                                     In Range        Out of Range          Reference Range
*Hepatits C Antibody                             Reactive                  Non-Reactive
                                                          Verified by Repeat Analysis
*Signal to Cut-Off                                  2.94       H                 or = 1.0 AND <8.0. The CDC recommends supplmental testing such as RIBA or NAAT(nucleic acid amplified testing) for confirmation.

Hepatitis B Surface                              Borderline
Antibody QL                                    

5/7
HCV RNL, quantitative    <50                                               <50 (60? not sure) IU/ml                    
real time PCR
HCV RNA, qunatitative    <1.70                                             <1.70 Log IU/ml  
real time PCR

6/22
HEP C AB, EIA SERUM   negative                                     negative
HEP B SURFACE AB       negative                                     negative

Any suggestion for interpretation?

In case it's relevant, here are other out of range results from blood test I had:
4/18  
Hepatitis B Surface Antigen w/Confirmation:
Hepatitis B Surface Antigen - non-reactive
Hepatitis B Surface Antibody QL - borderline
Hepatitis B Core IGM Antibody - non-reactive

Absolute monocytes - 179 L (reference range 200-950 cells/uL)
Bilirubin, total - 1.6 H (0.2-1.2 mg/dL)
Cholesterol, total - 210 H (125-200 mg/dL)
LDL-cholesterol  - 133 H (<130 md/dL (calc))

5/7
Bun/Creatine Ratio - 23 H (6-22 (calc))
alpha-fetoprotein, tumor marker - 2.6 ng/ml (reference range: <6.1; but for some reason, it was circled)                          

[pierrot]

I made a mistake with Signal tp Cut-Off. It actually reads:

*Signal to Cut-Off                                  2.94       H                ''  or = 1.0 and <8.0. The CDC recommends supplmental testing such as RIBA or NAAT(nucleic acid amplified testing) for confirmation.  

(However, doctor instead ordered HCV RNA titre.)

[pierrot]

Sorry for the mess. For some reason, it doesn't show up as I posted.

From what I've read from knowledgeable and helpful people here, it seems that I need to take RIBA or qualitative RNA test? Do I need both? And what is NAAT? This is first time I heard about it.

And do I need to be concerned that bilirubin level was elevated to 1.6 on 4/18 though it was down to 0.4 (reference range 0.2-1.2) on 5/7? Thank you so much.

[Jakied]

I would suggest you have the 'Riba' test done before you have the Pcr qualitative test.  MUCH cheaper, easier and result is ready in two days.  My gut tells me your Riba will be neg, which would mean no antibody to Hcv.  Riba is VERY specific for Hcv antibody, more so than the screening test.

Patients who are riba neg almost always are pcr neg, which means virus neg.  NAT means nucleic acid test, which is another name for Pcr.

If I were you, i would have the riba test.  if this is neg, you are probably, 99%, home free.  If you want to remove all doubt, then have the pcr qualitative test, which is expensive but peace of mind is worth something.

take the riba test and hope for a neg result.  I have a feeling you will be neg.