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Author Topic: My Test Results Please help me Understand this  (Read 20614 times)

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Offline hope2bcured

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  • Posts: 26
My Test Results Please help me Understand this
« on: October 16, 2015, 01:00:51 pm »
I just got my test results back and Im not sure what this means, please someone
tell me this is good.

HCV RNA PCR (QUANT) - HCVRNA
COLLECTION DATE   10/13/2015   08/19/2015   06/22/2015
ORDER DATE   10/13/2015   08/19/2015   06/22/2015
RESULT DATE   10/15/2015   Result Received Electronically   08/21/2015   Result Received Electronically   06/24/2015   Result Received Electronically
ORDERING PHYSICIAN   Ayala, Julio   Ayala, Julio   Ayala, Julio
HCV RNA QUANT,IU/ML   <15 (<15 IU/mL)   <15 (<15 IU/mL)   1223204 (<15 IU/mL) H
HCV RNA QUANT,LOG IU/ML   <1.18 (<1.18 )   <1.18 (<1.18 )   6.09 (<1.18 ) H


Offline hope2bcured

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  • Posts: 26
Re: My Test Results Please help me Understand this
« Reply #1 on: October 16, 2015, 01:31:24 pm »
When I researched my results I got the following.

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.
 
So basically, I am screwed, thats what this means right?

Offline Lynn K

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  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: My Test Results Please help me Understand this
« Reply #2 on: October 16, 2015, 02:22:24 pm »
I believe the <15 is the lowest level the test can read not your result. I did also see in the line of info what may be your actual result

HCV RNA QUANT,IU/ML 1223204 (<15 IU/mL) H  (H meaning high) and

HCV RNA QUANT,LOG IU/ML   6.09 (<1.18 ) H which is also above normal. Log is a different way of representing the same number but in the logarithmic scale

The <15 is a normal result as is the log <1.8 if I am understanding your information correctly your scores of:

HCV RNA QUANT,IU/ML 1223204  and
HCV RNA QUANT,LOG IU/ML 6.09 (<1.18 )

Would seem to me to indicate you are positive for the hep c virus with a viral load ( copies of virus circulating in your blood) of 1,223,204. But you should absolutely confirm this with your doctor

That being said you are not "screwed" by any stretch of the imagination there are new meds just approved in the last 2 years that are highly effective with cure rates in the 90's of short duration treatment and more easily tolerated by most patients than the older less effective treatments of interferon weekly injections.

I had hep c from 1978 until this year

You will be fine see your doctor get treated get cured

Good luck
Lynn

« Last Edit: October 16, 2015, 02:26:10 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline gnatcatcher

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  • Posts: 1,372
Re: My Test Results Please help me Understand this
« Reply #3 on: October 16, 2015, 04:28:03 pm »
I just got my test results back and I'm not sure what this means, please someone
tell me this is good.

HCV RNA PCR (QUANT) - HCVRNA
COLLECTION DATE   10/13/2015   08/19/2015   06/22/2015
ORDER DATE   10/13/2015   08/19/2015   06/22/2015
RESULT DATE   10/15/2015   Result Received Electronically   08/21/2015   Result Received Electronically   06/24/2015   Result Received Electronically
ORDERING PHYSICIAN   Ayala, Julio   Ayala, Julio   Ayala, Julio
HCV RNA QUANT,IU/ML   <15 (<15 IU/mL)   <15 (<15 IU/mL)   1223204 (<15 IU/mL) H
HCV RNA QUANT,LOG IU/ML   <1.18 (<1.18 )   <1.18 (<1.18 )   6.09 (<1.18 ) H

hope2bcured, if each line gives the newest (10/13) datum first and the oldest (06/22) datum last, then on June 22 you had a viral load of 1,223,204 IU/mL, but on both August 29 and October 13 you have so few IU/mL that the test can detect that there is a tiny bit but it can't count exactly how many. This means you have a good chance of becoming undetected (cured) by 12 weeks after treatment ended. See Lucinda Porter's explanation here:
http://www.hepmag.com/articles/hepatitis_c_questions_2502_27873.shtml
The relevant portions:
If you are concerned that you may have some residual HCV swimming around in your body, that will someday become a full-blown infection, rest assured, as this is quite unlikely. Hep C replicates a trillion times a day, so “not detected” might as well be zero. It is extremely unlikely that a small amount of HCV will remain alive in your body without having replicated to much higher amounts. In fact, viral load tends to replicate at much higher numbers when treatment fails.
. . .
I just finished HCV treatment, but my viral load was detectable at week 8 and 12.  Does this mean my chances of being cured are low?

No. In the old days, back when treatment was long and used interferon, there were clear milestones that helped us know what our chances were of permanently clearing hepatitis C. Now with new direct-acting antivirals (DAAs), things have changed. Research by the NIH Clinical Center showed that low levels of HCV RNA at the end of treatment are not predictive of treatment response among patients with hepatitis C virus treated with interferon-free regimens. (Clinical Infectious Diseases, March 2, 2015) Harvoni was used in this study, but the trend is likely to apply to all treatments using HCV DAAs.


hope2bcured, in another post, you indicated you finished treatment in mid-September. There have been other people on these forums who were detectable at 4 weeks after EOT but became undetectable at 12 weeks post-treatment, therefore cured. To answer your question, No you are not screwed. You still have a good chance of reaching SVR12.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: My Test Results Please help me Understand this
« Reply #4 on: October 16, 2015, 07:57:39 pm »
Hi again

Ok I missed the dates that is what I get for reading on my phone. Also did not research your other posts good job Gnatty

Anyway as Gnatty said there have been several here most notably Dragonslayer who were weakly detectable at EOT who went on to achieve SVR 12. We are thinking it could be either broken pieces of virus or a straggling few remaining virus that cannot reproduce.

When folks relapse the virus reproduces rapidly right back to many many copies and for me when I relapse last year my liver functions that had gone back into normal on treatment were again above normal when tested a week 12 post before I received my viral load test result giving me a warning there might be a problem.

But whatever the science is you still are in the running for cure so don't give up yet.

Oh yeah I also forgot to say welcome to the forum.

Good luck and please let us know how your 12 week post treatment results turn out we are all rooting for you

Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline hope2bcured

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  • Posts: 26
Re: My Test Results Please help me Understand this
« Reply #5 on: October 16, 2015, 08:22:45 pm »
Thank you guys for the responses!!

Yes, Gnatty is right, The June 22 test was right before I started the Harvoni, i started later that day. And the other two (the first one was 8 weeks into Harvoni) and
the second was this past week. I just finished the Harvoni Sept 13.

When I posted the results I also posted research showed that <15 does not mean undetected. I like what you guys are saying that its just too low. But, :( Going by how I feel (sheer exhaustion) I would think I still have it. My dr was not in today, so I have to wait until Monday. In my logical mind, I feel as though, if there is virus there, then, it will do what it has done to the folks who took past tx where it would come back with a vengeance.  I will stay hopeful and hope that in December when I go for the SVR 12 it will state undetected. I think if my test stated that, I would feel better. Why do some folks say Undetected and mine didnt? Thats whats really bumming me out. Thank you, kind folks for the responses, I appreciate it.    Also, how can it drop lower, if I am not taking Harvoni anymore? :/

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: My Test Results Please help me Understand this
« Reply #6 on: October 16, 2015, 08:40:33 pm »
if it didn't say "not detected" or "Undetected" it means although the test cannot quantify the number of virus as there are too few it can detect the presence of hep c RNA

anything less that 15 is below the LLOQ
http://www.quansysbio.com/lld-lloq-uloq

Upper and Lower Limit of Quantification (ULOQ and LLOQ)

The ULOQ and LLOQ are the highest and lowest standard curve points that can still be used for quantification

When I treated last year with sovaldi and olysio my before treatment viral load was 2 million when I relapsed when tested as 12 weeks post my viral load was 2.4 million

When hep c comes back it does not mess around you won't see less than 15 you would see millions and most who relapse do so in the 1st four weeks so hang in there your are not out yet

Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline gnatcatcher

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Re: My Test Results Please help me Understand this
« Reply #7 on: October 16, 2015, 09:03:38 pm »
Hope2bcured, you are far from the only person feeling a lot more fatigued after Harvoni treatment ends. I had a stretch where I needed 9 hours/night and most days a nap on top of that. I can't remember anyone on these forums having a proven answer as to how a VL can drop lower after treatment, so it'll be interesting to learn if your dr knows. Please post what your dr says, so we can all learn something. Thx.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline hope2bcured

  • Member
  • Posts: 26
Re: My Test Results Please help me Understand this
« Reply #8 on: October 16, 2015, 09:14:47 pm »
Thank you so much Lynn, that makes a lot of sense what you said!!!

And Gnatty, what I was referring to is

"hope2bcured, in another post, you indicated you finished treatment in mid-September. There have been other people on these forums who were detectable at 4 weeks after EOT but became undetectable at 12 weeks post-treatment, therefore cured. To answer your question, No you are not screwed. You still have a good chance of reaching SVR12."

If they were detectable at 4 weeks after tx but became undetectable at 12 weeks like you said, how is that if they stopped the Harvoni?   So you mean, the virus can still die, after the tx?  lol Im so confused.

Offline gnatcatcher

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Re: My Test Results Please help me Understand this
« Reply #9 on: October 16, 2015, 09:34:21 pm »
I'm saying I don't understand how, either. I hope your doctor understands and can answer your question without medical jargon -- then you can explain it clearly to us.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

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  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: My Test Results Please help me Understand this
« Reply #10 on: October 17, 2015, 01:09:49 am »
 The treatment doesn't actually kill the virus Harvoni prevents the virus replicating so I'm just guessing that if you're getting a weak detected or just barely detected that is because either it's remaining broken virus particles or perhaps some of viruses that just having quite died yet but there are able to reproduce so no more virus babies no more virus
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline MelHu

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  • Posts: 33
Re: My Test Results Please help me Understand this
« Reply #11 on: October 28, 2015, 01:34:41 am »
Hi everyone!
I just received  I just received my 4 week EOT result today. It's disheartening. At the end of my 12 week Sovaldi/RIBA viral load was <20 IU/ml and detected and now 1 month post TX results are reading the same. I was starting to feel better, healthier and having my head geared towards the " undetected" news and unfortunately didnt get that today. But I guess my liver got some rest from the virus. My NP said he has seen cases that clear months post TX. So I keeping my fingers crossed. Good luck to all!!!
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline KimInTheForest

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  • Believe in yourself
Re: My Test Results Please help me Understand this
« Reply #12 on: October 28, 2015, 09:49:43 pm »
Hi everyone!
I just received  I just received my 4 week EOT result today. It's disheartening. At the end of my 12 week Sovaldi/RIBA viral load was <20 IU/ml and detected and now 1 month post TX results are reading the same. I was starting to feel better, healthier and having my head geared towards the " undetected" news and unfortunately didnt get that today. But I guess my liver got some rest from the virus. My NP said he has seen cases that clear months post TX. So I keeping my fingers crossed. Good luck to all!!!

Don't give up MelHu! We have people right here on these forums who have continued to be "detected" post-tx (at very low level like you), and have gone on to reach SVR12 - i.e., cured. It ain't over til it's over. If you actually had active HCV still replicating in your liver, your VL numbers would be much higher. Could just be fragments of dead virus still floating around in your blood creating the <20 detected results.

best of luck,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline dragonslayer

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  • Posts: 873
Re: My Test Results Please help me Understand this
« Reply #13 on: October 28, 2015, 10:52:22 pm »
Thats right, Kim.. .Not only was I weakly detected at EOT, but also at 7.5 wks post treatment. It wasnt til 12 wks post that I reached undetected, and confirmed again at 24 wks post treatment.  MelHu, you will probably resolve to Undetected at 12 wks post for SVR12.  Best of luck.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline MelHu

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  • Posts: 33
Re: My Test Results Please help me Understand this
« Reply #14 on: October 29, 2015, 12:32:42 am »
Thanks Kim, Lynn and Paul. Great words of encouragement. You know my heart sank to my feet and I just wanted to give up hope then decided to come to the forum.....and as always the support and feedback from everyone is so positive and uplifting that ALL of your kind words brought my spirits up!!!!  I'm thankful for this forum.  And Lynn, you encourage ALL of us with your insight and knowledge.  Thanks a million for being here!!! 
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline MelHu

  • Member
  • Posts: 33
Re: My Test Results Please help me Understand this
« Reply #15 on: October 29, 2015, 12:38:27 am »
Paul, your are the "dragonslayer". I read somewhere that you didn't clear until post TX   So I've been searching for you!!!  And to my surprise you responded!!! Thank you. I feel very hopeful now. Your people are the BEST!!!!
Thanks!
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline dragonslayer

  • Member
  • Posts: 873
Re: My Test Results Please help me Understand this
« Reply #16 on: October 29, 2015, 03:16:05 pm »
Mel, I dont know if youve seen this study, but take a look. For most of us, anything before 12 wks post is noise in the system.  Its why a lot of doctors dont want to test before that; the anxiety created is often not justified.

http://hepatitiscnewdrugs.blogspot.com/2015/03/hcv-rna-does-not-always-mean-treatment.html
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: My Test Results Please help me Understand this
« Reply #17 on: October 29, 2015, 03:26:01 pm »
All I can say is thank god for this forum and smart lucid folks like Gnatty, Lynn and DragonSlayer.  I just want to add one thing that we tend to forget when put all of our hope into one basket.  We also, all of us, have amazing immune systems.  For many of us, our bodies fought off a virus  that did not sleep while churning out copies at a rate of a trillion a day 24/7 for 30 to 50 years.  Well, our immune systems did not sleep either and we made it to a cure because of that system.  Consider that even though the meds stop, our immune systems do not.  It is my understanding (reiterating what Lynn mentions), the drugs make it possible for our immune systems to win the battle by disabling the virus's ability to hyper replicate, which is why this disease has been so tough.  We will not have the legitimate answer as to why the drugs seem to continue their effect after tx for some time, but whatever the case we are not helpless at the end.  Hep C has properties that indeed befuddle our bodies but, remember, 15 - 25 % cleared the virus on their own and did not become chronic.  thanks all
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline MelHu

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  • Posts: 33
Re: My Test Results Please help me Understand this
« Reply #18 on: October 30, 2015, 11:08:44 am »
Thanks Paul for that link. It sure makes me feel very hopeful. I too want to be a dragon slayer!
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline hope2bcured

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  • Posts: 26
Re: My Test Results Please help me Understand this
« Reply #19 on: November 01, 2015, 08:50:22 pm »
So, can anyone tell me when this intense fatigue will subside? As well as the Liver pains?  Took my last Harvoni Sept 13

I went this past Friday for testing of my Thyroid, Iron Levels and Cortisol to see if they
have anything to do with this overwhelming fatigue.


<15 at 8 weeks into Harvoni
<15 post 4 weeks Harvoni

SVR 12 to be drawn in December.

Thanks folks.

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: My Test Results Please help me Understand this
« Reply #20 on: November 01, 2015, 09:54:12 pm »
hope...very cool congrats you made 4 eot.  I would have my 4 by now but they messed up and only did a CBC...good news is, my CBC looked good  :).  You've got this!!
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline KimInTheForest

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  • Believe in yourself
Re: My Test Results Please help me Understand this
« Reply #21 on: November 01, 2015, 11:15:41 pm »
So, can anyone tell me when this intense fatigue will subside? As well as the Liver pains?  Took my last Harvoni Sept 13

I went this past Friday for testing of my Thyroid, Iron Levels and Cortisol to see if they
have anything to do with this overwhelming fatigue.
Thanks folks.

That's good that you are getting those tests done, Hope2bcured. Might also be worth checking your B-12 as well as a complete blood count showing your hemoglobin and red blood cells in particular.

I am now 14 weeks post-treatment. My own post-tx problems lasted about 6 weeks. They were pretty severe, and I was bed-ridden a lot of that time. My riba-anemia took longer to resolve, and may still not be completely resolved (but close!). But the anemia thing is/was more manageable than my 6 weeks of post-tx problems, which were all new developments not seen before or during treatment: fever, sweats, inability to do anything, inability to eat, weird groggy delirium in which I could not think straight (or drive). I did not have any significant problems during treatment, so this post-tx thing really caught me by surprise.

Post-treatment problems and their duration really vary a lot. Many people have no problems post-tx. Others have problems like fatigue and joint pain (that they did not have before) lasting months. So, it's hard to predict. I can say that I am finally feeling pretty darn good at 14 weeks post-tx. Hang in there. It will get better. :)

kim
« Last Edit: November 01, 2015, 11:19:16 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline hope2bcured

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Re: My Test Results Please help me Understand this
« Reply #22 on: November 02, 2015, 11:44:36 am »
Thank you so much for the response Kim!! I appreciate it. Yes, I did have my B 12 levels checked they were like 300. I take a b 12 a couple of times a week.  The scary thing is when I see folks who have energy and feel better, it makes me think maybe I did not clear the virus, and thus the continued Liver pain and fatigue. Who knows, I just wish it would end. I am in a much worse place than before starting Harvoni. It doesnt make sense to me that this is what cured is called.

Offline beto

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Re: My Test Results Please help me Understand this
« Reply #23 on: November 02, 2015, 12:28:17 pm »
Our bodies are pretty complicated.  However, when considering possible issues, things like: Thyroid, adrenals (no one has brought up adrenal fatigue), pituitary, autoimmunity, electrolytes, many other nutritional deficiencies etc ad nauseum.  Maybe our bods a just saying "give me a break".  Anyway, for us pioneers, the info we would like now about what might be going on EOT, will not be answered for a while after clinical studies have been concluded specific to our questions.  In the meantime we get to assume and conject...weeeee
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline KimInTheForest

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Re: My Test Results Please help me Understand this
« Reply #24 on: November 02, 2015, 01:22:07 pm »
Thank you so much for the response Kim!! I appreciate it. Yes, I did have my B 12 levels checked they were like 300. I take a b 12 a couple of times a week.  The scary thing is when I see folks who have energy and feel better, it makes me think maybe I did not clear the virus, and thus the continued Liver pain and fatigue. Who knows, I just wish it would end. I am in a much worse place than before starting Harvoni. It doesnt make sense to me that this is what cured is called.

I know what you mean, about asking oneself "this is what cured means?#@!?" I was asking myself that a lot as I lay in bed for a few weeks with a fever of 102 & sheets soaked in sweat. Apparently not due to any infection (according to a bunch of lab tests run) - just my body, or perhaps more specifically my immune system, going haywire for a bit.

As for liver pains… I had some during the last week of tx, and then again about 12 weeks post-tx. Yet I am still virus free. And others here have reported the same. So rest easy on that score. Chances that your fatigue and liver pain are due to return of HCV are very low. It is almost certainly some other sort of post-tx adjustment your body is going through.

best,
kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline hope2bcured

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Re: My Test Results Please help me Understand this
« Reply #25 on: November 02, 2015, 01:24:59 pm »
Beto, I started a supplement for Adrenal Fatigue, as I cant exist like this, I will try anything. My dr just tested my Iron levels (they have been high in the past), TSH t4, and Cortisol. He keeps saying Im cured no reason to be fatigued. Im just so paranoid, because I see other folks with undetected and they say they feel great, more energy, clearer head etc. And Im fatigued, liver pains, constant ear ringing, and just so much worse than when I started. My test results at 8 weeks into Harvoni and 4 weeks post were both <15 maybe that means the virus is back and thats why I feel so awful. :(

Offline hope2bcured

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Re: My Test Results Please help me Understand this
« Reply #26 on: November 02, 2015, 01:26:10 pm »
Awe thanks Kim, that sounds great!!! I am going to try and hold on to those thoughts!!!!!!!

I know what you mean, about asking oneself "this is what cured means?#@!?" I was asking myself that a lot as I lay in bed for a few weeks with a fever of 102 & sheets soaked in sweat. Apparently not due to any infection (according to a bunch of lab tests run) - just my body, or perhaps more specifically my immune system, going haywire for a bit.

As for liver pains… I had some during the last week of tx, and then again about 12 weeks post-tx. Yet I am still virus free. And others here have reported the same. So rest easy on that score. Chances that your fatigue and liver pain are due to return of HCV are very low. It is almost certainly some other sort of post-tx adjustment your body is going through.

best,
kim :)

Offline beto

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Re: My Test Results Please help me Understand this
« Reply #27 on: November 02, 2015, 02:07:37 pm »
Hope,

We are all different.  As you can see you are not alone, as Kim has been testimony.  I think pretty much everyone has some kind of EOT sides, I had my own.  Sorry for the folks like you who have to go through a rough patch.  Doctors go by generic results.  Your body will heal the way your body heals.   ;)
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline hope2bcured

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Re: My Test Results Please help me Understand this
« Reply #28 on: November 03, 2015, 07:14:05 am »
Thank you Beto!!!! :D

Offline MelHu

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Re: My Test Results Please help me Understand this
« Reply #29 on: November 04, 2015, 12:46:00 am »
Hi everyone
Just received a letter From my Dr saying " congratulations! No virus detected". But I'm confused because the test result stated:
10/23/15 HCV Load See Note
               HCV Load Interp HCV RNA Detected-Not
                      Quantifiable when <20 IU/ml
So my question is, this does not qualify me for undetected so why is my Dr sending congratulations my way?  I'm stumped because I'm anxiously awaiting the all clear UNDETECTED!!!  Am I correct?  And should I call and ask my Dr and the team (NP and pharmacists)?  I am 6 weeks post TX.
Thanks for all the support all!!!! Really appreciate everyone!
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline Lynn K

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Re: My Test Results Please help me Understand this
« Reply #30 on: November 04, 2015, 01:21:24 am »
Hi MelHu

Here is a link to an article by Lucinda about this subject.

http://blogs.hepmag.com/lucindakporter/2015/03/new_hepatitis_c_trea_2.html

New Hepatitis C Treatments and Viral Load Results: Clearing Up Confusion

We have had several people here who had results like that at EOT dragonslayer for one. They subsequent went on to become not detected at the 12 week post treatment test and are now cured of hep c. The only test that matters is the 12 week post treatment test.

When I relapsed last year my virus came roaring back to the same level it was prior to treatment at the 12 week post treatment test.

If you are getting a result like that odds are in you favor you don't have hep c and that later testing will be not detected just as it was for dragonslayer and others.

Don't give up the ship just yet! If it would help I suggest you contact your doctor for clarification.

Please let us know what your doctor says and your 12 week post result but I bet it will be not detected.

Best to you
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline MelHu

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Re: My Test Results Please help me Understand this
« Reply #31 on: November 04, 2015, 04:48:59 pm »
Thanks Lynn. Will do.
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline MelHu

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Re: My Test Results Please help me Understand this
« Reply #32 on: November 24, 2015, 03:34:10 pm »
Hi everyone!!!
I just received a call from my NP with the 3 month EOT news that all of us on this journey prays and hopes for. Said he had to call me with the UNDETECTED results!!!! As Bruce Willis would say "YIPPIE KAI YAY!!!!!!"  He did convey that we still have to get to the 6 month EOT for the final FINAL!  But truly the ultimate Thanksgiving gift for all of us that have reached that standard.
I cannot thank all of you and this forum for the support, wisdom, courage, hope and just being there which helped me through some very dark and depressing moments throughout.  Keeping my fingers crossed for smooth sailing for the duration. Lynn, Paul, and countless others thanks for just being there. And to all sharing this road, don't give up hope, truly an amazing time for us.
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline KimInTheForest

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Re: My Test Results Please help me Understand this
« Reply #33 on: November 24, 2015, 03:40:18 pm »
Congrats Melhu! What a Thanksgiving!

kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline beto

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  • "no risk it, no biscuit"
Re: My Test Results Please help me Understand this
« Reply #34 on: November 24, 2015, 08:21:09 pm »
WoooHooo!!!  MelHuuu!
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline MelHu

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Re: My Test Results Please help me Understand this
« Reply #35 on: November 25, 2015, 12:48:47 am »
Thanks Kim and Beto
"Yippee Kai Yay" to you both too!!!  Happy Thanksgiving to you and all !!!!
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline MelHu

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Re: My Test Results Please help me Understand this
« Reply #36 on: November 25, 2015, 01:00:05 am »
Beto
Truly AMAZING!!!!! About your new Fibroscan. There's hope for us all. I was thinking about that virus being gone sure helps the liver to rest and heal a little.  Hope I get fantastic results like yours. You know, I had something going on with my tongue ( a symptom that the liver is distressed) and it was dried and had very deep cracks on it. Well since being on the TX I've noticed my tongue health has improved. I imagine ditto for the liver.  At least I'm not feeling any pain in my liver too!  I am hopeful! 
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline Lynn K

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  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: My Test Results Please help me Understand this
« Reply #37 on: November 25, 2015, 01:42:16 am »
Alright MelHu!

We live in amazing times!

Congrats
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline beto

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  • "no risk it, no biscuit"
Re: My Test Results Please help me Understand this
« Reply #38 on: November 25, 2015, 10:41:55 am »
Melhu,

Those numbers are according to two scans, one in June and one last month (5 mo. period).  Scans have been known to vary...or in rarer cases give a missed reading.  So I remain cautious, and will have another done after I get my 12 week EOT.

However, from what I am seeing and reading about, fibrotic liver improvement is looking like more of a rule than an exception, even in some pretty high cirrhosis score individuals.  I have seen dramatic drops in others and in studies, but my drops were rapid.  Perhaps not so unusual because most Doctors are not doing scans or biopsies so soon after treatment.  This is because, our knowledge of reversal has concluded that it takes a long time to happen when it does.  That was before Harvoni and other drugs like it.

Consider how rapidly out VL and enzymes came down.  This was unprecedented just a few years ago.  If you were undetected at 4 weeks, that does not mean that you were not also at say, 2 weeks...you were not tested at 2.

The scar tissue was considered unhealable...perhaps, the liver is so prolific that it may be able to break down and repair it...only time and study will reveal.  What might be interesting with all the emphasis on the liver (with hep) is that maybe it will turn out to be the first organ system to right itself after cure.  They are finding, what we always had suspected, that years of the virus affect other systems like the heart, the brain and who knows what else.  So here we are coming out of tx with great liver numbers but, not feeling as good as we should.  Could it be because of the damage and dysregulation of other systems fighting for homeostasis?  Time will tell.  Again, we are the pioneers and the first to come out of the gates.

As for the scans...I hope they are correct...there are too many folks reporting major drops in Liver Stiffness scores to ignore anyway.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

 


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