How do you know if you're 'undetected'?

[Nina Mae]

Hi Everyone,

If I start rambling, forgive me.  (I 'speak' incessantly when nervous).

Does someone actually 'tell; you when you are/if 'undetected'?  I had labs done after week 4 (had stopped riba temporarily).

 I know a lot of members post lab results some must be relevant to 'undetected' status.

Most recent from Apr 10 (Day 39 of 84;Epclusa/Riba):

ALT:   13 (reference range:  <36 U/L)
AST:  32 (reference range: <36 U/L)
HGB:  110 (115-155 g/L)
PLT:   161  (150-400)
Total Bili:  14 (<17)   
Conjugated Bili:  7 (less than 8 ;preview shows symbol and number  as <

I don't know what the my RNA is nor VL.

Abnormal tests results:

Hemology panel:  HGB 110; MCV 76 (82-98); MCH 23.3 (27.5-33.5 pg); RDW: 19.6 (11.5-14.5%).  Methinks this is indicative of my anemia, no?

But these two tests are nagging at me and I wonder if they are also tests that would be considered in reference of virus detection:

INR (Final):  1.4 (0.8-1.2)
ALP:  209 (35-120)

Is it these two tests (INR and ALP) part of the 'detection' status also?  Is the entire hemotology panel included in this?  Is there anything I'm missing?

Had the Triphasic CT Scan today...afterwards, after they check images, I suppose, tech asked me if I ever had an MRI and how do I react to them....was that a subtle hint that I'll be doing that next or am I 'riba paranoid' and he was just making convo?

I'll tell you what...the small dosage of riba that I'm on in comparison to what so many others had to endure is ridiculous and my deepest respect and kudos to each and everyone of you who didn't end up being dragged away in a straight jacket!

Could/would someone please help me sort this out?

Thank you!   

[Lynn K]

The HCV RNA by PCR test aka viral load test the one with a number of copies of virus in your blood is the one that would say either a viral load or not detected that is the test that says you have either no virus in your blood or the amount is below the tests ability to detect usually less than15 IU/mL

The test we are referring to when we say not detected is the viral load test the HCV RNA by PCR test that is the only test that will provide this information.

HCV RNA by PCR translated into English means HCV (Hepatitis C virus) RNA ( ribonucleic acid) similar to DNA like when you do a DNA test to know your family history or how they find criminals sometimes. PCR (Polymerase chain reaction) this is the specific laboratory procedure being performed.

INR is how long it takes your blood to clot people with cirrhosis have blood that takes longer than normal to clot which is why be bruise more easily.

The alkaline phosphatase test (ALP) is used to help detect liver disease. In conditions affecting the liver, damaged liver cells release increased amounts of ALP into the blood.

ALT and AST are liver enzymes they are increased when your liver is being injured. Most people with hepatitis c have slightly elevated liver enzymes. Yours are in normal range now because your hep c viral load if not at a not detectable level is at least very low so hep c is no longer hurting your liver.

HGB is part of a CBC complete blood count HGB means hemoglobin it is one of the many different components of human blood. Ribavirin often causes a decrease in HGB on treatment this is called anemia if your HGB is below normal you may feel tired and easily winded when you are anemic.

PLT is platelet count another component of human blood platelets are often low in cirrhosis mine were 85 before my hep c was cured now four years later they are 125 still below normal but improved. Your platelets are normal so that is a good thing.

Personally I’ve never had a CT scan or an MRI I’ve only had abdominal ultrasounds for imaging of my liver and spleen.


Hope this helps

[Lynn K]

This is exactly how my lab reports HCV RNA not detected results. This is my test from March 2016 one year after I finished treatment I just wanted to be sure.

HCV RNA BY RT-PCR, QUANT - Details
 
Details
Study Result
Narrative

3-12 S/O LABCORP, NC 27215 (HCVQT)
Component Results Component   Your Value   Standard Range
HCV RNA RT-PCR, QT   See Below IU/mL   See Notes IU/mL

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".

General Information
Collected:
03/11/2016 1:55 PM
Resulted:
03/18/2016 10:12 AM
Ordered By:
Name removed, ARNP
Result Status:
Final result
This test result has been released by an automatic process.

This is my before treatment HCV RNA test

HCV RNA BY RT-PCR, QUANT - Details
 
Details
Component Results Component   Your Value    Standard Range

HCV RNA RT-PCR, QT   2422260 IU/mL   See Notes IU/mL

HCV LOG 10   6.384 log10 IU/mL   See Notes log10 IU/mL

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".

General Information
Collected:
09/03/2014 12:10 PM
Resulted:
09/05/2014 11:08 PM
Ordered By:
Name removed
Result Status:
Final result
This test result has been released by an automatic process.

[Nina Mae]

Thank you so much for all this, Lynn. 

Is the HCV RNA Quant Test done routinely during tx or prior to tx (for baseline?) and maybe at EOT?

I'm looking at the labs that I have and not one (there are 3) show or indicate anything re: 'HCV RNA' nor "VL".  The BW I have are from *after* I started tx,  I started on  March 1 and I have copies of Mar 14, Mar 28 and the most recent done on Apr 10 and none of them indicate anywhere this 'HCV- RNA' and I'm starting to get as mad as a hornet that things aren't being communicated.

I'm all freaked out, getting 2 imaging tests for HCC and not knowing nothing other than they 'must have' seen 'something', and I still feel like I'm not getting the full picture of things here and that's pissing me off...aside from being on the 'edge' waiting for a confirmation as to whether this 'something' is benign or malignant!

Sorry about the rant...I need to go meditate or something...about to climb walls.

[Lynn K]

So I assume at some point you had a test for a viral load which confirmed you have hepatitis C and another test for genotype likely genotype 1a. You only would need that test to know for certain you are infected with hep c no additional “baseline” would have been needed. As far as on  treatment testing the only thing on treatment testing would confirm is patient compliance with treatment. On treatment testing is really of no diagnostic value.  The only test that says you were cured is the test drawn 12 weeks after you have completed treatment, if that test is not detected you are cured.  Well it is nice to see not detected at four weeks on treatment it doesn’t mean anything. If you should happen to test weakly detected at 4 weeks of treatment all it really does it scare patients it doesn’t mean anything as far as your end result.  There have been a number of people who tested positive while on treatment but went on to be cured at 12 weeks post. In my case I tested negative at four weeks and at EOT but I was found to have relapsed 12 weeks post treatment.

 While many offices do perform on treatment viral load testing it’s not really necessary. What is a good indication that you have hepatitis C on the run is having normal liver enzyme test results when they were elevated prior to treatment.

 Does your doctors office have an online location where you can view your test results? My doctor uses my chart that is how I can seen my results from years ago any time I want.  If they don’t have a service like that your test results are your test results you can go into the office at anytime and have them print you copies so you have hardcopies you can review.

Most of us like having access to our test results so we can have a better understanding of what’s going on and be able to ask questions here at the forum.

If you don’t have an HCV RNA test I guess they didn’t test you for viral load. If they are not doing on treatment testing they likely will test you at EOT but they definitely should test you 12 weeks after you have completed treatment that’s the one you want to see.

[Nina Mae]

Yeah, Lynn, you're right.  I was in a real 'riba state of mind' yesterday and I replied to your post...somewhere!  lol

Anyway, I did find from back in Nov 2018:

 HCV RNA (PCR/NAAT) Quant:  237595
HCV RNA (PCR/NAAT):  5.38 log10IU/mml

But that was back in Nov. and since you explained that not all dr's do check RNA through tx, my group doesn't.

 They test HCV RNA Quant  3 times that are assigned:

1)  at EOT (in my case, May 23rd);
2)  Week 12 post tx (Aug 15th);
3)  Week 24 (Nov 7, 2019).

Lynn, thank you again, so very much for holding my hand through this panic-type attack I must have been having yesterday.  I'm much clearer today and that's a gift!

So I should go back to my 'wait and see' theory because I really shouldn't future surf at my age anyway!  lol

Stay great, feel better!   

[Lynn K]

Worry does nothing to reduce tomorrow’s troubles it only steals the joy from today.

Try to remember what you spent energy worrying about a couple of years ago. No matter how much you may have fretted it did nothing to change what eventually came to pass I’m sure.

Or a blast from the past:  la la la la la la live for today!

Best of luck on your EOT tests in late May

[Nina Mae]

"Worry does nothing to reduce tomorrow’s troubles it only steals the joy from today."--Lynn K.

So well said, Lynn!  I've struggled with 'worriment' most of my life...worrying about one thing or another (It's hereditary, every woman in my family is a worry wort).

Thanks for your well wishes for the EOT tests! 

Sidebar:  The tech who did that triphasic CT scan said that dr will get the pathology report in a week...that will be next Monday. 

So I'll 'wait and see' what's up with that...I figure if I don't hear anything from anyone by Tuesday, I'll be on it.

[CS35NY]

I am also trying to see if what my results mean as my doctor has been slow to respond because of COVID.

HCV RNA Quantitative  Real Time PCR <15 detected
HCV RNA Quantitative Real Time PCR <1.18 detected 
I am about to finish my 7 week of 8 week treatment. This blood test is from the end of 6 weeks. PLEASE HELP ME.

I am so nervous that I will have add on to my treatment time and will not know early enough.

35 type 1a; infected since birth (or since 16 without other risk factors present).

[Lynn K]

We have had a couple of people here who tested as detected at EOT and even at 4 weeks post treatment who went on to become not detected at the critical 12 week post treatment test. See if you can find some of DragonSlayers posts from I believe 2015. We are guessing it could be virus fragments still circulating or whole virus particles that are not viable and most importantly can no longer reproduce.

Got this from the internet about how these new hep c meds which are called DAA’s or direct acting antivirals work.
“these drugs work by interfering with the action of a protein needed for the growth of HCV. This prevents HCV from multiplying.”

People have tested as not detected during treatment and at EOT but when tested at 12 weeks post were found to have relapsed. If fact that happened to me.

On treatment testing means little. The only test that matters is the 12 week post treatment test.

I know it’s hard to be patient and calm especially when you don’t see not detected on your HCV RNA test result. Hang in there and know that these drugs really do work for the majority of patients especially those who don’t have liver damage who have been treated multiple times in the past. I was treated three times with the old interferon based treatments and after being infected for about 30 years I was diagnosed with cirrhosis. I failed my first DAA treatment when the meds were first being approved. This put me in the category of most difficult to treat patients. I was finally cured on my fifth attempt with Harvoni and ribavirin for 24 weeks.

Even if the worst should happen and this round of treatment doesn’t work there are many other very effective treatments that can be used. We have had a few here that did fail their initial round but later retreated and were cured.

Hang in there best of luck
Lynn

[Lynn K]

I forgot to ask what treatment are you taking? And yes your result is detected not the preferred result of not detected. But with no viral count as your result is lower that 15 virus cells per mL of blood. You wrote 35 type 1a I assume you mean you are 35 and you are infected with hep c genotype 1a. Genotype 1a is the most common form of hep c in the US. It is the same genotype of hep c I was infected with.

[CS35NY]

Thank you for that response!!! I am so sorry to ask another one and bother you but these were my old results:

HCV RNA Quantitative Real Time PCR 8100000
HCV RNA Quantitative Real Time PCR 6.91


Does it show a decrease? Man do I feel stupid as I cant tell. Thank you.

[CS35NY]

I am taking Mavyret. Yes ma'am. I am 35 years old with no liver damage but poor liver functioning. My mother died from cirrhosis of the liver in 1996 due to Hep C and I'm just so anxious still. I wish I had found this forum earlier!

[Lynn K]

Why do you say you have poor liver function? Is it because you have elevated liver enzymes? Having elevated liver enzymes means something is bothering your liver in this case hepatitis c. Elevated liver enzymes does not equate to severity of liver damage. It only means something is currently attacking your liver. I have cirrhosis which was diagnosed in Jan 2008 but have normal liver enzymes because I no longer have hep c attacking my liver. Some doctors refer to liver enzymes tests as liver function tests but that isn’t really an accurate description.

So sorry about the loss of your mom. We lost so many along the way waiting for medical science to find these new DAA meds and a cure.

Hang in there your not done yet.

[Lynn K]

“ Liver Function Tests (LFTs) are one of the most commonly-requested screening blood tests. Whether for the investigation of suspected liver disease, monitoring of disease activity, or simply as ‘routine’ blood analysis, these tests can provide a host of information on a range of disease processes. The title ‘liver function tests’ is, however, somewhat of a misnomer; only the bilirubin and albumin given in this panel offer information regarding the functional capacity of the liver. At a basic level the evaluation of liver enzymes simply gives information as to whether a patient’s primary disorder is hepatitic or cholestatic in origin.“

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3609680/

[CS35NY]

So it's a VERY complicated story that I won't get into too much detail BUT I gave birth in Decemeber. I wasnt awre I was infected although I did have a test done when I was younger that was not really disclosed to me. But that was also in the late 1990's so who know how accurate.

I was diagnosed with something called cholestastis while pregnant. This is where the poor liver functioning finally came to light. I don't have cirrhosis but my OBGYN was concerned with the liver functioning (dark urine, light poop, itchy hands and feet). Low and behold a hepatitis full panel and this was confirmed.

[CS35NY]

Oh no it wasn't just a basic screen of the liver enzymes. I should have explained that!

[Lynn K]

Ok well you said you don’t have any liver damage so I’m a little confused on that. Why do you say you have poor liver function?

[Lynn K]

Hi did you see this article?

https://www.hepmag.com/article/shortened-epclusa-regimen-effective-recent-hep-c-infection

I would suggest trying to discuss this with your doctor about the possibility of extending your treatment.

Ok I missed your message about the cholestastis. Was this pregnancy related and has since resolved?
Good luck