random test and now I may have hep c?? So scared please help

[Sayitaintso]

I had a hcv quant rna pcr and I'm terrified now!
Of course I can't call the doctor until Monday!

It said VALUE : 215 / Std range: NOT DETECTED
Linear range is 15 to 25,000,000 IU/ml

what does this mean??
I'm newly pregnant, I have an 18 month old, married...
did I give this to them??
I'm so upset and depressed and anxious right now

[Mugwump]

I would think that it means what it says NOT DETECTED. If it said detected with a log of a quantified viral load then you would have HCV.


I take it that you tested positive for the antibodies? If you did what this means is that you were exposed to HCV at some time in the past and your body naturally cleared the virus. If you test positive for HCV antibodies it does not necessarily mean that you have HCV. I had HCV am cured and will always test positive for the antibodies to the disease.


Remember also that having HCV antibodies cannot protect you from getting the disease they only work to slow the disease not prevent it. HCV is a very slow acting disease with high risks of a reduced life span, extra hepatic effects when it becomes chronic and generally is a disease that slowly kills you like chronic alcoholism.


I am sure that your doctor will confirm all I have told you.



CHEERS
and best wishes
Eric

[Lynn K]

I think based on what you posted

"VALUE : 215"
"Std range: NOT DETECTED"

Is that you maybe weakly detected

Your result was 215 if I am understanding what you posted correctly is a very low viral load. A normal range result would be "Not detected".

But you absolutely need to have your doctor explain your result. Without seeing your result we can only guess at what the report means and most of us are not medical professionals.

However, the risk of household transmission is very low even between long term monogamous married couples hep c is not considered to be an STD.

The risk of transmission to your unborn child is about 5%.

Hep c is a very slowly acting virus and can take decades if ever to cause serious liver damage in most people and with the new treatments recently approved is nearly 100% curable.

I hope you do not have hep c but if you do your 18 month old very likely does not have hep c and the risk to your unborn child is low. There are many here married for many years where one partner has hep c while the other does not so again your husband likely does not have hep c either. But if you are positive you would probably want to have your husband and child tested if nothing else for peace of mind

Best of luck to you please let us know how this turns out and let us know if we can help in anyway

[Mugwump]

Sorry, I was weakly detected but they never put the words not detected on any report I had that exceeded the minimum value. That is why I very strongly suspect that the test is only a statistical noise reading with that low a result. Otherwise they would not have stated NOT DETECTED

Lynn if you are correct then a retest is what should occur. I was weakly detected once but the number was in the thousands so I never completely cleared during interferon treatment until the EOT and then quickly relapsed.

Here is hoping that her test was a false reading if 215 was the actual quantified value. It does happen frequently according to the infectious specialist Doctor I deal with and is a something which is much more frequently a false positive and certainly not a confirmation of infection.

I have never heard of anyone who is HCV active that has had a reading that low.

[Sayitaintso]

Thank you all for the responses!
My doctor's office called and he wants me in tomorrow morning to discuss results. I am an anxious person, so hearing that doesn't exactly settle the nerves (even though I'm sure it's routine)
Of all of the lab work (CBC , metabolic panel, etc, etc) everything was normal except low gamma gt, low creatinine, low glucose (non fasting), low MCHC

The hcv quant rna prc was 211 IU actually

I guess now I wait to hear what the doctor says... ugh

[Lynn K]

We've had a few here that had no number because it was below the level of quantification (15) but reported as detected those were some of the weakly detected post treatment ones

[Sayitaintso]

He said I have a low strand of Hep C... That "not detected" means nothing? I'm so sad and scared for my husband and baby girl
He said saliva carries it?!? I have kissed my little girl on the lips since birth
What is going on

[Sayitaintso]

I am getting a retest for quant rna pcr and also having test for:
- genotype
- SMA 18, (Comprehensive Met Panel), GGTP
- AFP
done tomorrow

you were saying a false positive is fairly common?

Thank you all for your help

[Lynn K]

Hep c is not speed by kissing hugging sharing utensils coughing sneezing sharing a drink from the same glass or bottle.

Hep c is spread through blood to blood contact only it is a blood born virus. Don't share tooth brushes or fingernail clippers or razors there is a small risk with those

[Sayitaintso]

I need to find a new doctor... he told me to treat it like a cold as far as putting others at risk!

[dragonslayer]

What kind of doctor told you to treat HCV like a cold?   The way its spread is so different from the way a cold is spread that its hard to fathom a doctor giving advice like that.  Was this your pcp who told you that?

Really shameful, the incompetence out there that masquerades as proficiency.

[FutureThinker]

Yes, Say --- find a new doctor! FT

[Lynn K]

Hep c is blood borne if your doctor compared the infectiousness of hep c to the common cold absolutely see a new doctor your doctor sounds woefully uninformed

[Sayitaintso]

He is a "gastroenterologist"...
I had my daughter with me, I was in tears... he said parents shouldn't be kissing their kids on the mouth anyway blah blah blah to treat it like a cold
I felt scared to even touch her - I FEEL scared that I gave something to her

Would you say the tests I am going for tomorrow could tell me something different?

And also read that the genotype test has to have over >650 IU to detect... where mine is 211... is this a waste of time?!

[dragonslayer]

Say, Id just have the restest.   The result will tell you what to do.. .Your initial viral load measurement was so low, youll want to see what it says on the restest.   If you still have a detected result, at that point, Id decide to find another doctor; this one sounds incapable of treating you properly.    You might want to find out how many patients he's treated for HCV and with what, and how successful the outcomes were.

You have every right to ask him these questions, and to vet him as thoroughly as you want.. This goes both for him, and any new doctors you interview.

The fact that he thinks you can infect others by kissing, or breathing/sneezing on, etc, would probably be an immediate disquailifier. 

But dont jump to conclusions... HCV is a rapid replicator...  With a result of 211, you might not have the disease, its so low.   Stay calm, take the retest, and repost the result....  Im sure youll get lots of help, support, and advice here.

Good Luck!!

[Lynn K]

This info comes from the US Center for Disease Control

http://www.cdc.gov/hepatitis/hcv/cfaq.htm#cFAQ31


What are ways Hepatitis C is not spread?
Hepatitis C virus is not spread by sharing eating utensils, breastfeeding, hugging, kissing, holding hands, coughing, or sneezing. It is also not spread through food or water.

[Sayitaintso]

Thank you all so much! It is so nice to have people to talk to and calm my nerves a bit (the pregnancy hormones aren't helping! haha)

I will repost my results when they come in

[davidsconfused]

I was married 38 years with it,  but didn't know it until the last year and a half so there was no precautions taken at all up till I found out I had hepc. My wife doesn't even have any antibodies much less hepc.  It's not that easy to get and requires direct blood to blood transmission.

[Mugwump]

Sayitaintso; You are where many of us were once. The ignorance about how this disease is spread is a terrible failing of our medical systems. I cook professionally and did not worry whatsoever about spreading the disease before I was cured.


The small risk of spreading the disease to your unborn child is really the only aspect that I as a male did not have to consider.
I strongly suggest that you change doctors asap! I was extremely fortunate in having been referred to one of the best infectious disease specialists in the Canada when I was diagnosed in 1993, he and his staff informed me very well about the truth about how this disease is communicated and how it is not.


Please think of it this way, if the disease were as easy to spread as a common cold on door handles etcetera then it would be an epidemic of monumental proportions. Above all do not start to think of yourself as being different or remotely dangerous to others that you deal with. Unless you are sharing needles or your blood directly with others the chances of infecting someone are almost zero.


Because of the wonders of the human placenta barrier it seems that the exchange of life giving sustenance is not the mechanism of transmission to the foetus. The best guess is that the transmission of the disease from mother to child more frequently occurs during the birthing process. Please try to speak to a more informed individual about the risks during pregnancy and delivery!


My sister is a well respected paediatric (neo-natal) specialist nurse with over 30 years experience here in Canada. She has worked at the delivery of many HCV infected mothers without seeing the spread of the disease.   


I know that the fact that there is almost no chance of spreading the disease to the ones you love is of little comfort. The fact that there is a chance no matter how remote is what lingers in your spirit! And this is because of love.
So let that love guide your hands with your children and your loved ones.
Because you have these fears I know you are a loving parent and compassionate person and this is all that matters really.


Learn to be compassionate with yourself and dealing with this disease and getting treatment after your child is born will happen and you will be fine. Yes have your children tested when possible but do not blame yourself if the disease did spread during your pregnancy! It was in no way your fault or the fault of anyone.


If others are less than understanding of this then do not dwell upon their ignorance. In knowing the truth of the situation yourself and being of a calm but determined spirit the ignorance of others regarding this disease will be much easier to deal with. The thoughts and best wishes are with you from all on this forum. 

[I fightis thetitis]

Lyn and Eric,

I'm confused on this one.
So if the HCV lab test reports
"HCV RNA 15 IU/ml - LogIU/ml 1.18  HCV RNA not detected"
Does that mean HCvirus is there but since it is below 15 that is considered not detected?
Or does that mean something else like Virus not there, however cannot test below 15??

Thx

[Lynn K]

It means the LLOQ Lower Limit of Detection is 15 so as best as the test can determine there is no virus. It down not mean there is no virus. That is why we wait post treatment to make sure any virus that may have existed does not return.

Think of it as say you had poor vision and your friend asks you to look at something small and far away. It is there but you can't see it.

So more like your first example except maybe there is no virus maybe there is the test just cannot determine once the amount of virus is below the LLOQ.

There is one other senario if there is less than 15 but the test picks up virus DNA it would be <15 detected so the test doesn't know if it is 14 or 5 IU/mL present but it can detect virus DNA

Hope that helps
Lynn

[I fightis thetitis]

Thanks Lynn,

So when you had your EOT test do your labs show <15 - log 1.18?
or do your labs show the virus @0 = complete eradication?

I guess one could argue if at EOT one has a lab at <15 with log 1.18, virus not detected, the virus can potentially still be there and replicate.

Or perhaps the existing antibodies make the HCV test always present <15.

Better question: Do the labs need to show 0 without the <15 to be in the clear?
at 24 weeks EOT can a lab still show <15 log 1.18 and one is considered cured?

Thank you for your support.

[Lynn K]

The test is looking for virus DNA which is the virus. Antibodies are made by your body when it is fighting the virus antibodies are not the virus so would not be picked up by the test for the virus

This is my 44 week post treatment result

Component Results      Value     Std Range
HCV RNA RT-PCR, QT   See Below   See Notes

HCV Not Detected
HCV QNT TEST INFO   See Below   See Notes

The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL".

Narrative
Original Narrative
3-12 S/O LABCORP, NC 27215 (HCVQT)
Result status: Final result

A result of log 1.18 is not zero it is weakly detected as far as I am aware.

The point is even with my test result at EOT that looked exactly like my 44 week post treatment above there can still be virus present. The only way to know is wait 12 weeks post EOT and see if the virus has repopulated. When I relapsed in 2015 on Sov/Oly 12 weeks my EOT test was as above but my 12 week post was 2.4 million IU/mL when not cured hep c comes back with a vengeance there is no doubt you have relapsed

For your last question  would say as your doctor I have personally never heard about being weakly detected 12 weeks post but different labs report differently

Best to you

[I fightis thetitis]

Thanks Lynn,

Okay so I just spoke with my doctors assistant and she said everyone who is treated for Hep C with Harvoni will typically be <15 with 1.18 log at the EOT. However this is considered non detected bc it is below measurements.
Also, that at 6 mos and 24 weeks those numbers should remain the same unless you relapse. She said they will never go away completely.
Confusing but I am wrapping my head around what it means.

Best!
Greg

[Lynn K]

Got no idea mine is as shown no numbers and not detected.

Found a site
http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83142

that says:

Interpretation
This assay has a result range of 15 to 100,000,000 IU/mL (1.18 log to 8.00 log IU/mL) for quantification of hepatitis C virus (HCV) RNA in serum.
 
An "Undetected" result indicates that the HCV is absent in the patient’s serum specimen.
 
A result of "<15 IU/mL (<1.18 log IU/mL)" indicates that HCV RNA is detected, but the HCV RNA level present cannot be quantified accurately below this lower limit of quantification of this assay. When clinically indicated, follow-up testing with this assay is recommended in 1 to 2 months. To assess response-guided therapy eligibility, an "Undetected" result is required, and a result of "<15 IU/mL mL (<1.18 log IU/mL)" should not be considered equivalent to an "Undetected" result.

1.18 log is apparently the same as 15 the LLOQ of the test

[Lynn K]

It could be how your lab reports but I can't see how our viral load test should differ from someone who never had hep c. Yes we will always test positive for antibodies but in my thinking we should not have any viral load

[FutureThinker]

Thanks for the link/info, Lynn -- FT

[Sayitaintso]

** UPDATE **

I finally got my results back from the retest done on 5/11!

HCV RNA by PCR, Qn Rfx Geno
Hepatitis C Quantitation HCV Not Detected IU/mL 01 HCV
log10     Unable to calculate result since non-numeric result obtained for     component test
Test Information: The quantitative range of this assay is 15 IU/mL to 100 million IU/mL

HCV Genotype            Not indicated

Also, I was able to located labs from 2013 where they tested for antibodies and that was negative!

HCV reflex to Quant RT PCR
02s/co ratio   0.0 − 0.9           <0.1 HCV Ab 02                                Interpretation:     Negative


Could the test from 5/4 that showed a value of 215 IU/ml (but stated "not detected") have been a lab error?

I had the WORST anxiety for WEEKS after that doctor told me I had it... grrrr



I want to thank everyone that offered their insight and kind words during everything!!

[Lynn K]

I cant speak to your old results or what may have happened but a result of Not detected does mean you don't have hep c so congrats.

Maybe you were one of the lucky 25% who beat hep c on their own is my best guess.

But none the less congrats one less thing to worry about for you! And thanks for letting us know

[Mugwump]

SayItaintso lab test anomalies are common. All it takes is a slight reading of what appears to be viral rna and the software counts the blip. This is why some test methods must repeat test to confirm a reading. In your case the false reading was noted as not detected but there was an anomalous count the first time around as I suspected.

I am extremely surprised that you did not just have another inexpensive antibody test first before going on to a full gold standard Genotype test! No wonder medical costs in the states are so ridiculously high. Sounds like your doctor is not up to speed with the real world when it comes to HCV IMO

Anyway I am thrilled that you really do not have the disease and all the best to your next child, you and your family. 
Cheers
Eric