newly diagnosed with hep c

[Javi1962]

I was in the hospital with a flu on july 3rd, this turned into pneumonia and boop lung infection, while there for over a month, doctors found out I had hep c, through blood work, I asked my doctor what i should do, he did a blood test and said my liver enzymes were good and to see him again in 1 year to be tested again. I feel like I need more treatment or something, not just see you in a year. what would you recommend I do? not sure what my first step should be.
also dr prescribed me prednisone which supresses immune system, on 10mg per day, been doing that for 3 months now.


This discussion is related to my G.I. Dr. ignoring my disease.

[22hamilton]

I think you are probably quite fortunate to be diagnosed at this time, now you know of the presence of the virus you can be proactive and do something about it, this is also an exciting time in terms of treatment options.
Obviously you need more information to work on the appropriate action to take,I would be looking to find out more about genotype etc and if your doctor appears dismissive I would find a doctor who is prepared to treat the situation with importance that it deserves. You will find answers to more or less all your questions if you read around this forum. Welcome aboard and goodluck !

[Shehabi]

I was in your situation when i knew about it, my action is that i visited 2 more doctors and took their opinion on that, you may do that and opinion wont harm you,
what i did in relation to that also, i read about it in this forum and the internet, i learned few things about the blood tests and the liver function tests (names and some numbers) not really expert but i know the names at least, then i went to do the those test (Liver functions, Viral Load, Ultra sound) and consulted the doctors again with the results.

luckily i started early with relatively low viral load and i was (undetectable) in week 4 of the treatment.

this was my case and maybe it wont be yours but you have to be proactive and start asking and searching, be here in the forum and read, ask any question and many will reply, don't be down or depresses and if you do so, come here and talk, don't worry you shall get over it

good luck

[Isobella]

You need to find out what kind of blood tests they did.  There is an antibody test that will show whether or not you have been exposed to hcv.  If this comes back positive they should then do an HCV RNA/PCR test to determine if you have an actual viral load.  

If you do have a viral load it means you have the virus and would need additional testing from there.  They will do a genotyping and most often a sonogram and biopsy.

Not all people with hcv have elevated liver enzymes or liver damage.  But if left untreated it can certainly lead to that.

I would definately follow up with another doctor if your current doc is not taking this seriously.  You should consult a gastroenterologist or hepatologist (preferably) to get some real answers.

I was also diagnosed out of the blue and felt very fortunate to have treated and cleared the virus before I became symptomatic. And it is true, there are so many different treatment options coming out in the near future.

So, let us know if they did the PCR.  And if not, get it done and let us know how it comes out.

Good luck to you,

Isobella

[nygirl7]

Yes to all that was said above I totally agree you do need more testing to determine if you do have the disease and how bad the liver damage is that you have.  Then from there you can make a decision to treat or see if you have time to wait.  Biopsy is the best tool and it's not the same as the ultrasound so have them both.

Most regular physicians don't know anything about hep so make sure you do see a doctor who specializes in it.

[Javi1962]

Thanks everyone for the comments, I went to see my doctor again today and I asked him to give me a referral to see a specialist so I can at least start treatment, the doctor tells me, I checked your enzyme level and your liver is fine everything checks out normal, so your hep c is not active, so your insurance more then likely will not let you see a GI dr. I asked him well what do I do from here? i am concerned I have hep C and don't know anything about it or what to do!!
He said he will submit the referral to see what the insurance co. says, and I should come back to him every 6 months to check my liver enzymes through blood work.

this sounds to me like wait till the damage comes first? can't I start treatment now? and does this sound right? through a blood liver enzyme test he can tell my hep c is not active? not sure what this means, if not active WHAT is it doing?

please help!

[Javi1962]

Hey Shehabi, your comment said that after 4 weeks you were undetectable, does that mean the hep c goes away?? please explain that, i hear of the treatments working, but then other people say it never goes away, which is right?

[Isobella]

The antibodies don't go away.  They are produced by your immune system after having been exposed to HCV.  The virus can go away.  Either you clear it on your own or you have tx.   The question remains whether or not you had an PCR/RNA showing a viral load.

That will show if there is actually virus...not just antibodies.  People can treat if there is a viral load.  So,  Shehabi began treatment, had a PCR/RNA done at 4 weeks, and it came back undetectable (UND) which meant that the treatment was working.

If you do actually have the virus, there is no active or inactive version of it. If you have antibodies and no viral load, I suppose your doc could be referring to this when he says your hcv is not active....but I would specifically ask him if they checked for antibodies or if they did the PCR.

If it were me, I would ask for copies of my labs.  That way you will know exactly what was done and what the results are.

Good luck,

Isobella

[Javi1962]

Thanks for the advise, I am going today to get a copy of labs, I will post what it says, maybe you can help me know what to do next.
Dr. said I was not active due to enzyme levels being normal.

[epiphiny]

I agree with everything that has been posted here, but I DO NOT agree with your doctor saying that the virus is not active simply because you have normal liver enzymes!  It is absolutely not true!  I had normal liver enzymes for years but I most definately had the virus, and it was replicating.

The only way it could be 'inactive' is if it has been killed off by either your own immune system or treatment, but as Isobella said: only a test that checks for the amount of virus that is detectable in your blood can tell you with you have the virus or simply the antibodies.

IMHO, you would well advised to look around for a better doctor, one who is more knowledgable about Hepatitis C.  In the meantime, I look forward to seeing your your actual results.

Epi :)

[Shehabi]

Isobella answered your question, and i would you to take a look at this post, it is really good information to you and everyone.

http://www.medhelp.org/posts/Hepatitis-C/Intersting-Case-Study-to-all/show/1095287

[Javi1962]

I went to the doctors office and this is the results from lab, not sure how to read so I will post comments:

HCV lgG AB         Reactive*

HVV lgG AB S/CO Ratio     >11.0

S/CO Ratio
Nonreactive:    11.0

Specimen is highly reactive (S/CO ratio > or = to 11.0). Confirmatory test be RIBA is not indicated. This immunoassay test was performed on the Siemens Advia Centaur system using two HCV recombinant (c200 and N55) antigens and synthetic HCV core (c22) peptide. Assay performance characteristics have not been established when the Siemens Advia centaur HCV assay is used in conjunction with other manufacturers assays for specific HCV serological markers.

_____________________________________________________________________


AST / SGOT                 27
ALT / SGPT                 38

P6 - enzymes


comments: no liver problems, Regular report in 1 year



don't know what any of this means, please help me, not sure what I should do next, doctor said, since my liver is normal enzymes, I am not ACTIVE hep C and the insurance will not refer me to specialist, he said I don't need one at this point.

this is the only test I have taken, no viral count or geno type, idk.... :(

[Javi1962]

I accidently put:     HVV lgG AB S/CO Ratio     >11.0

should be HCV lgG NOT HVV

[Joey_M]

It's possible you have been exposed to the Hep C virus but cleared it on your own - about 15 - 20% do. You should get a viral load test - if undetectable, you probably cleared it on your own. If detectable, you should then get a genotype test. I agree with others here and don't think your MD understands the standard of care for Hep C.

[Isobella]

Over my head, but I googled around and found this.

http://www.turkjbiochem.com/2007/051-054.pdf

ABSTRACT
Hepatitis C Virus (HCV) infection is frequently diagnosed by detection of antibody
against the HCV (Anti-HCV). The seropositivity of anti-HCV could reflect chronic
infectious status and/or previous infection. Detection of HCV-RNA by PCR is still
laborious, too expensive, requires specific expertise and facilities, and usually used to
confirm positive serology. This study was performed in anti-HCV positive patients to
determine the relationship between anti-HCV Sample rate / Cutoff rate (S/CO) ratios,
HCV-RNA and Alanine aminotransferase (ALT) levels. In addition, the utility of anti-
HCV S/CO ratio values in predicting HCV viremia in anti-HCV positive patients were
evaluated. Serum samples of 124 patients were tested for anti-HCV by a MEIA technique,
for HCV-RNA by a quantitative PCR and for ALT by IFCC UV test. S/CO values for
anti-HCV test and ALT levels were correlated with the quantitative values of HCV-RNA
(respectively, r=0.824, p<0.0001 and r=0.795, p 25.9. All HCV-RNA negative cases had normal serum ALT
levels (24.67 ± 8.56 U/L) and relatively low S/CO values (3.81 ± 4.32) for anti-HCV tests.
HCV-RNA positive other cases had greater S/CO values (119.53 ± 37.99) and elevated
serum ALT levels (99.53 ± 49.96 U/L). The sensitivity and specificity of anti-HCV in the
diagnosis of HCV viremia was 100 % and specificity was 100 % respectively when S/
CO ratio was set 25.9 as a cutoff. Among patients with high S/CO ratios, the likelihood
of HCV-RNA positivity was directly related to S/CO ratio. S/CO values may be used to
predict HCV viremia in Anti-HCV positive individuals and therefore, quantitative HCVRNA
testing could not be routinely required for all patients.
124 anti-HCV positive patients confirmed by a third- generation
test, were included in this study.
Sample rate /Cutoff rate (S/CO) values for anti-HCV tests
and ALT levels were correlated with the quantitative values
of HCV-RNA (respectively, r= 0.824, p<0.0001 and
r=0.795, p25.9.
HCV-RNA values were between 102 and 107 IU/ml in
samples with a S/CO>25.9. All HCV-RNA negative
cases had normal serum ALT levels (24.67±8.56 U/L)
and relatively low S/CO values (3.82±4.32) for anti-HCV
tests. HCV-RNA positive other cases had greater average
S/CO values (119.53±37.99) and elevated serum ALT
levels (99.53±49.96 U/L). Average ALT levels versus
Anti-HCV S/CO values are shown in figure 1. S/CO values
and ALT levels were significantly different between
HCV-RNA positive and negative patients (p<0.0001
for both) (Figure 2, 3).
Turk J Biochem, 2007; 32 (2) ; 51–54. Balk et 53 t al.
We further analyzed the best cut-off value of the S/CO in
differentiating viremic from non viremic patients. The S/
CO value of 25.9 showed sensitivity (True positive ratio)
of 100 % and 1-specificity (False positive ratio) 0 % in
discriminating both categories of HCV infected patients.

[BellaMamma]

Hello and welcome.  One of the reasons I joined this site was the positive feedback.  It's also very reassuring to know that people are educating themselves about thier health, and eager to do what is best. Your doctor angers me and should be educating you.  As far as your insurance goes, I do believe that any GI or Hepatologist would see you, just simply based on your positive Hep C.  These doctors would definately give you the next blood tests to determine the status of the blood results...because it is possible, like previously mentioned by others in the forum, that your body cleared it up on its own.  If that is not the case, you need more answers.  It will prob take few weeks before you get into the specialists appt, but it is worth the wait.  Also, you are not using or drinking, right?  If you are doing these things(I am not judging you), you need to stop.  Your liver is filtering all of these things, and it is def not helping your liver or Hep C if you are using or drinking.  These are poisonous to your liver, and if you do have Hep C, it will make your viral load higher.  Please continue to post...

[Javi1962]

does anyone know if I can just pay for a test to check viral count and geno type?
are there clinics that will let me do that? or do I have to go through a Doctor?
Thanks everyone for your comments!

oh also Bellamamma thanks for your comments, yes I am not using, I do not do drugs I was drinking beers on the weekends with freinds while watching sports and things, but I have since stopped that as well until at least I can figure this hep c thing out.

[Joey_M]

You need to get a doctor to order these lab tests - a lab will not do it without their orders. What kind of insurance coverage do you have? You should be able to find a more knowledgeable doctor. There are many in the LA area.

[Javi1962]

I have Anthem Health, I called the doctor again today, he is suppose to call me back, what lab test should I ask him for, is it the RNA test i want? or Riba? sorry new at all the terms.

[Joey_M]

Here is a link that explains the tests:
http://hepatitis.about.com/od/diagnosis/a/HCVtests.htm

Based on what I have read, I think you want the Quantitative RNA at this point. If your doctor doesn't know which test to order, you should find a new one with experience in Hep C. I have Anthem in San Francisco and their coverage has been great and have a lot of medical providers in network.

[Isobella]

Ask for a Quest Heptimax.  That should do it.