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Avatar universal

Down 24000 IU to 4000 IU then up to 1.5 Million IU in 6 weeks!!! No therapy either! Something’s not right with tests!!!!

On 3/10/10 my HCV antibody test was .3 (which is considered negative).
On 4/29/10 my HCV antibody test was > 11 (which is positive).
My guess is I contracted HCV on January sometime.
I have not done any therapy. Considering I am young (21) female and Caucasian and very thin so I have a better chance at spontaneous clearance of the virus than most people so I decided to run some RNA tests to see what my viral load was
On 5/14/10 NGI superquant was
Hepatitis C Quantitation 60000 Copies/mL
HCL log10 4.778 Log10copy/mL
International Units 24000 IU/mL
IU log10 4.380 Log10 IU/mL

Three weeks later
On 6/7/10 NGI superquant was:
Hepatitis C Quantitation 10000 Copies/mL
HCL log10 4.000 Log10copy/mL
International Units 4000 IU/mL
IU log10 3.602 Log10 IU/mL
Obviously excited and ready for another test I ordered another SuperQuant three weeks later
On 6/28/10 I received the results that said that Effective June 28th, 2010 NGI Superquant is being temporarity replaced with HCV RT-PCR Quant (non Graph). The results were are follows:
HCV RT-PCR, Quant (Non-Graph)
Hepatitis C Quantitation 1516050 IU/mL
HCV log10 6.181 log10  IU/mL

Onbiously something does not seems right.
I dropped 1/6th of my viral load after my first test in just three weeks with no therepy, I carefully and painstakingly attempted change nothing in my life for three more weeks and then my load jumps from 4000 to 1.5 Million!!!!!
I recall SuperQuant requiring blood to be shipped to California (taking about 4 days) and then up to like a week to process. The other test that replaced it took just 48 hours.
Is SuperQuant even valid test? Could the length of the process degrade the sample? And happen Twice even? Is that why its no longer available because its wrong?
Any input is greatly appreciated.
17 Responses
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Avatar universal
Congratulations, you are doing great!
Helpful - 0
Avatar universal
Started TX - UND in only two weeks - thanks to all - will continue for probabaly 24 weeks.
Helpful - 0
Avatar universal
As stated, because of the time frame you are now considered chronic.  The virus is NOT going to resolve on it's own.

Expect viral load and enzyme fluctuations.

You seem to know more than the average person about hepc so it shouldn't be difficult for you to manage your disease by using the watch and wait approach or simply treating with the current standard of care.   Roche and Schering Plough have patient assistance programs which offer the drugs for free to those who have no insurance and qualify.

Trinity
Helpful - 0
Avatar universal
Your AST is more than double what is considered normal, your ALT nearly triple. I was infected 37 years and my AST/ALTs were similar.  Because of your age and short time of infection your chances of any real damage to your liver is not yet much of a risk.  Newer drugs are on the near horizon and you may be able to get help with the cost. GO TO a Doctor!!  good luck, jerry
Helpful - 0
Avatar universal
Ok. I went in and had another viral load test done, as I though the last one was suspect.

Here are the numbers:

On 7/6/10 RNA-PCR was (superquant was not available):
International Units 11300 IU/mL
IU log10 4.053 Log10 IU/mL

Also my liver AST is now only 46 and ALT is now only 92 when they were over 300 a few months ago.

Any input?
Helpful - 0
179856 tn?1333547362
Anyone have any other coments except get treatment and its expected?"

It would be nice to say I'm young and thin and white and there it goes bye bye. But if that were the case  a whole bunch of us would never have had to do treatment at all.  If you want to hear what you want to hear then perhaps you should write a journal to yourself.

The folks here have given you good, grounded, EXPERIENCED advice that they have learned over many years.  If you prefer to read one abstract from one study that supports your own opinion - you are likely to be extremely disapointed.  You can find a study to support anything under the sun......but sadly it doesn't make it reality.

Reality is, it sounds as if you are chronic at this point and once you are the virus will not go away no matter how much you wish it to or tell it to.  If you can't afford treatment - do as many of the others in here have done, find a trial that you can participate in and get REAL MEDICAL council on your condition. It doesn't matter if your VL is 100,000 or 1,000,000 - that is not how liver damage is done nor how it progresses. Many of us with LOW VL have had the worst liver damage. Find a trial or a clinic and seek real medical help for this disease while you are  'young and thin' that won't last forever believe me.......once you are old and have gainned weight and gotten cirrhotic your chances will be much much worse.

Other than that we wish you luck and are sorry we can't help you but fantasy Island doesn't really live in here, we are realists from VAST experience.
Helpful - 0
Avatar universal
I can relate to how you feel. When I was first diagnosed, my VL was 13,890. Three weeks later it was 77. A week later it was <43 (43 was the lowest the test could detect).  I thought I was clearing it.  However, a couple weeks later it went up to 11,250.  I was really upset. Luckily it's still low, but I really had my hopes up.

I don't think you should just wait around to see what happens.  I have read that if you are in the acute phase, and your VL goes up at all, your body is not going to be able to clear it, and you should consider treatment.  I think if you WERE going to clear it, the VL would continuously go down.
Helpful - 0
1225178 tn?1318980604
If you got exposed in January, your 6 months is up. If your viral load is going up, the virus has taken up residence and is multiplying, so the acute stage is past. Might want to get one more viral load done to verify.
Helpful - 0
Avatar universal
well, we tried to help and you received good advice. i guess you are looking to hear what you want to hear. There are no doctors here, just people that had or have HCV offering their "opinion".

In my "opinion" from what you describe you have chronic not acute HCV  You need to see a Hepatologist to stop gussing and finally confirm this.

good luck
Helpful - 0
Avatar universal
Reseach I have done disagrees with most of these posts. Assessing Viral load in acute HCV is critical to see if the virus is clearing on its own, then and only then should treatment be done. This is documented in many places. I was very sympomatic, and fit most critera for a spontaneous clearance.

I thought I was on my way 4 months after being exposed with 24000 UI, then 4000 UI 3 weeks later, then the test was switched on me and showed 1.5M UI.

No-one is managing my care because I am broke and I cant get any insurance nor therapy, the tests are being done by a freind who is concerned.

Anyone have any other coments except get treatment and its expected? Because reasearch shows its not expected and I would not get treatment until I see if it clears on its own.

Any input is greatly appreciated.
Helpful - 0
87972 tn?1322661239
If indeed you are infected with acute HCV, I believe it’s possible to experience periods of intermittent viremia. It stands to reason that your viral load would be variable as well. In fact, with chronic HCV, variations in viral load like this are expected as well.

Who is managing your care right now? Are you being seen by a GI doc? Hepatologist? Primary care doc?

If possible, seek out a highly experienced hepatologist that is familiar with management of acute cases; local GI docs might not be up to speed in this regard.

Good luck-

Bill
Helpful - 0
Avatar universal
Actually white, female, young and thing has a much better chance that 25% if you read the research. I thought I was on my way with a 24000 IU down to 4000 IU, but then another testing method produces a 1.5M IU, just seems like something happen.

Does anyone have any input to what might be the cause.

Virus Mutation?
Immune System giving up?
Reinfected (doubt it)?
Test contamination?

Please any theories.
Helpful - 0
1225178 tn?1318980604
There could be a big difference in the sensitivity of the test, which might be why they changed, and copyman is right about replication too.

You are in the group of people who have a better chance of clearing, but you do realize that that is only about a 20% chance, right? That isn't the best chance in the world, especially since the chances of clearing with tx is much higher for all genotypes in the first 6 months. I agree with Bali... tx would be a wise choice if you just got infected.

I hope you kill the dragon before it takes up permanent residence like it has with most of us. Not permanent, as in can NEVER clear with tx... it is permanent if we don't treat.

Brain fog is about 98% today, so I hope that made sense.

Diane
Helpful - 0
Avatar universal
I agree with the others. The VL fluctuates on a daily basis. A hepatologist explained it to me this way, " HCV produces up to a trillion virons a day! Some days your immune system is strong and wins the constant battle that is going on between immune sys and Hep C virus, if you happen to have a PCR test that day viral load will be low. And of course if the HCV wins that day viral load will be high. This constant battle is why people feel tired and fatigued when infected"

The viral load really means nothing unless used as a gauge to see how treatment is working.  When I first found out I had HCV I obsessed with getting PCR's done and saw  the fluctuation like you see.

Unfortunately the bottom line is you have HCV and should move forward with a plan to treat it. Since you are young and possibly recently infected then waiting for the new drugs coming out in about a year seems like a good option.

Best of luck
Helpful - 0
979080 tn?1323433639
what genotype are you ?

usually in the acute stages of hepc vl and enzymes are really high.

talk to your doctor but i would try zapp it with treatment right away.

if indeed it is in an early stage it only betters your chances

Helpful - 0
223152 tn?1346978371
Yes, flguy is right.  Viral Load can fluctuate that much.  It has to do with the replication I think.  Since you are talking about spontaneous clearing, I guess that means you have just recently contacted hep C?  If so, I believe the treatment is interferon without ribavirin.  Are you considering that?

frijole
Helpful - 0
96938 tn?1189799858
Unfortunately, the supreme answerer to your question doesn't stop by the forum so much anymore.
From the layman side of things, the fluctuation that you have seen is not out of the ordinary.  Often, there are fairly large swings in viral load even over short periods of time. In the big scheme of things, there's not a lot of difference among 60 thousand, ten thousand and a million.
For many viral load tests specimens and frozen and shipped significant distances for testing.
Was there an incident in January that makes you think you were exposed at that time?
Helpful - 0
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