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Author Topic: Did my dr lie to me? :/  (Read 1303 times)

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Offline KyLiRa

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Did my dr lie to me? :/
« on: July 26, 2018, 03:25:36 pm »
Hi everyone, may health come quickly to y'all.
I was tested not to long ago for hep c. I am positive but my doctor seems not to be to concerned about it. Saying I should get re tested down the road but my functions are all normal and I have such a low count? That dont haveanything to be worried about. I'm trying to get a better understanding of it and was hoping someone couldhelp me out. My log is 6.7 Iu/ml. Isthis low? Does this mean of the 6 years I've been infected my body has fought it for the most part? Thank you so much!!
« Last Edit: July 26, 2018, 04:43:21 pm by KyLiRa »

Offline KyLiRa

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Did my dr lie to me??
« Reply #1 on: July 26, 2018, 04:40:27 pm »
Just to add, I've done my homework, believe me. That's why I'm so confused. 6.7 means a vl of 6,000,000. That's obviously high. My type is 1a, according to my labcorp result a quantitative range of this assay is 15ui/ml to 100 million ui/ml. And the 6.7 is in "normal" range. Normal for who? Did my dr lie to me?

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Did my dr lie to me? :/
« Reply #2 on: July 26, 2018, 10:27:05 pm »
It is normal during the course of an infection to have viral load levels that move all over the place. Next month you might test down below 1 million. The tests your doctor is most likely concerned about are liver panel tests which show the amount of damage being done to the liver and are key indicators of on going severe liver damage.
Your current viral load means less about how damaged the liver is. Think of it this way: There is no way to ascertain the real levels of infected cells. This is because your immune system is keeping the disease under control but not curing it. If you suddenly have another source of stress upon your immune system, HCV can run rampant and kill greater levels of liver cells. As we age our immune system naturally deteriorates and HCV becomes worse over time in a fair number that are infected but those who have decent health otherwise can live a full life infected with HCV and never show any signs of cirrhosis.
Getting treated if you do not have signs of cirrhosis is your decision and the greatest benefit will be knowing that you cannot infect others accidentally and the fact that a fair percentage of individuals do progress eventually to cirrhosis and have a more difficult time later in life fighting a chronic HCV infection.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Did my dr lie to me? :/
« Reply #3 on: July 27, 2018, 12:41:03 am »
You have hepatitis C. You have normal liver enzyme levels indicating you are not having a lot of damage to your liver being caused by hepatitis C

However, hep c can also cause in some people extra hepatic symptoms. These are conditions caused by hep c effecting body systems other than your liver.

http://hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

As mugwump points out as long as you are infected there is always a concern of infecting others. Also if you are a female of child bearing potential there is about a 5% chance to transmitting the virus to your unborn child.

The choice to treat is yours to make. With the relatively new meds hep c is almost entirely curable with cure rates about 98% or better for those who have never treated before and don’t have advanced liver damage. The new treatments are generally well tolerated by most patients.

I suggest maybe getting a second opinion about the value of and risks vs rewards of treating and curing your hep c if that is something you want to pursue.

Best of luck to you

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 Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Did my dr lie to me? :/
« Reply #4 on: July 27, 2018, 12:48:37 am »
A normal test result on the HCV RNA by PCR test (viral load test) is “NOT DETECTED”
My viral load before I was cured was HCV log 6.315 or 2,065,760

But viral load doesn’t mean anything really as far as severity of illness. Having any viral load means you are infected with hepatitis C.
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 KyLiRa

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  • Posts: 4
Re: Did my dr lie to me? :/
« Reply #5 on: July 27, 2018, 01:10:11 pm »
Ok, ok. I see where I interpreted it wrong. Which i was trying to avoid because I know myself. I was looking at a liters chart and my number is in mL. That makes a big difference. So 6,000 ui/l would be my number which isn't high at all. My ALT is 57 which is kind of high. My VL number being so low, would you think my alt is due to fat most likely? That'swhat my dr had said. I guess still having a second opinion while I have insurance wouldn't hurt. And do you believe I should run out and get my fiance and daughter checked immediately since it's so low? They do not have insurance at the moment. I do truly appreciate you guys answering. I've had severe panic attack problems through all of this mess. I was expecting to have bad new as i am only 24 and was infected 6 years ago when I had a two month bad patch with a wrong group of friends. I've had some bad drinking binges since then, because of my party phase but I've grown out of that and haven't drank to get drunk in a couple of years. It's been a burden on my shoulders because I was told 6 years ago I had the antibody but I never got retested because I was scared.
You had said if my immune system takes another shot, it could get ugly fast? Should I talk to my dr about taking medication now? Or  wait? I know I have a great immune system as I get sick maaaybe once every other year and s half, but I know thathat wont last forever.
Thanks again you guys, you have truly made this that much easier.

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Did my dr lie to me? :/
« Reply #6 on: July 27, 2018, 04:21:11 pm »
Here's a useful chart that coverts log to viral load:

Log10   copies/mL
7   10,000,000
6.9   7,943,282
6.8   6,309,573
6.7   5,011,872
6.6   3,981,072
6.5   3,162,278
6.4   2,511,886
6.3   1,995,262
6.2   1,584,893
6.1   1,258,925
Log10   copies/mL
6   1,000,000
5.9   794,328
5.8   630,957
5.7   501,187
5.6   398,107
5.5   316,228
5.4   251,189
5.3   199,526
5.2   158,489
5.1   125,893
Log10   copies/mL
5   100,000
4.9   79,433
4.8   63,096
4.7   50,119
4.6   39,811
4.5   31,623
4.4   25,119
4.3   19,953
4.2   15,849
4.1   12,589
Log10   copies/mL
4   10,000
3.9   7,943
3.8   6,310
3.7   5,012
3.6   3,981
3.5   3,162
3.4   2,512
3.3   1,995
3.2   1,585
3.1   1,259
Log10   copies/mL
3   1,000
2.9   794
2.8   631
2.7   501
2.6   398
2.5   316
2.4   251
2.3   200
2.2   158
2.1   126
Log10   copies/mL
2   100
1.9   79
1.8   63
1.7   50
1.6   40
1.5   32
1.4   25
1.3   20
1.2   16
1.1   13
Log10   copies/mL
1   10
0.9   8
0.8   6
0.7   5
0.6   4
0.5   3
0.4   3
0.3   2
0.2   2
0.1   1

So if your viral load is log 6.7 IU/mL your viral load is 5,011,872 copies/mL of blood but anyway viral load doesn’t matter much.

The majority of people infected with hep c will have slightly above normal ALT and AST  Liver enzymes.

Yes fatty liver can also cause mild elevations in liver enzymes and hep c can contribute to the development of fat in the liver.

As far as household transmission it is very rare. Also sexual transmission for long term  monogamous couples is also uncommon.

Avoid sharing personal items like razors, fingernail clippers and toothbrushes is what the CDC recommends.  Of course getting tested simply for peace of mind is always an option.
« Last Edit: July 28, 2018, 11:29:05 am 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 Lynn K

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  • Member
  • Posts: 4,009
  • Get tested, get treated, get cured, fight Hep c!
Re: Did my dr lie to me? :/
« Reply #7 on: July 27, 2018, 04:22:48 pm »
ALT of 57 is considered a mild elevation. People who are very ill will have numbers above 500 to 1000
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 dragonslayer

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  • Posts: 865
Re: Did my dr lie to me? :/
« Reply #8 on: July 28, 2018, 08:48:23 am »
I would do what you can to get cured.  This can be a nefarious disease with unpredictable results.  You're young now, and while its probably not mandatory you seek treatment immediately, sweeping it under the rug  and forgetting about it can lead to a questionable future at best, and a dismal one at worst.

Youre lucky in that now, while not cheap, the cures are easy to take and most insurance is covering them.

Pursue it; you'll be happy you did!
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 KyLiRa

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  • Posts: 4
Re: Did my dr lie to me? :/
« Reply #9 on: September 02, 2018, 07:40:34 am »
I appreciate all the help guys! I've been approved for insurance through the state for another year, so I'm going to go ahead and pursue some sort of treatment. As cancer runs rapid in my family, it worries me to go any further without since I've already got fat on my liver. I'm scared of the process, but I know I need to get some sort of scan, as I've had weird pains in my kidney and liver it feels like and my utureus. Please wish me luck, i know this sight has given me lots of hope so far and I hope the best for everyone else!

 


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