Would Welcome your thoughts on the following ...

[Andromedae]

For 15 years before I was diagnosed (this past April) I have had 3 bouts moderate to severe attacks of fatigue that lasted 6-8 weeks at a time.  The attacks were so bad that during one episode I was essentially confined to the living room couch for days at a time.  I went to doctors and they said, "Oh, you're just depressed"  but I wasn't depressed at all.  I even for a time thought I had MS and got an MRI to screen that out (no plaques detected).  when I was finally diagnosed this year it all made a lot of sense to me.  I finally had an answer why I would have those occasional attacks.  Looking over the threads here I saw several who described exactly what I was going though.

Except ...  ....
I ordered copies of all my blood work for 2006 and 2007 (the VA lets you have copies of literally everything).  In 10/2006 My ALT and AST and bilirubin were normal AND they gave me a HPC antibody test which was NEGATIVE.

In 3/2007 my ALT was four times normal (140s) and my AST was in the 60s.  My bilirubin count was above normal (no HPC test was given).  And in 3/08 I came up HPC antibody positive when a P.A. FINALLY noticed the elevated counts and ordered a test.  It seems (?) clear that the elevated counts in 3/2007 indicate that I likely contracted the virus between then and the test in '06

So what the heck?   Why was I getting those weakness attacks then?  Could the "negative" HPC test have been wrong?  If so why was all my other blood work normal?  Does the anti-body test have a high false negative rate?

I'm glad I'm getting this treated now but none of this makes any sense to me.  does anyone have any thoughts on any of this?

Thanks for listening.

Andromeda

[Andromedae]

Thanks for all your thoughts.  I think NYGirl probably has the right idea in that I should just let the obsession of where and when i got this go and concentrate on getting better.  I just need to vent and go through this a little more - as I suppose we all did. A few specific thoughts:

To marcia :  I'm genotype 1a (I said I was 1b in my forst post but looking over my blood work I see it is 1a),

To NyGirl:  The doctors and tech told me that some degree of fibrosis can be detected via ultrasound.  Something to do with how defined the edge of the liver is, the drgree of blood flow through the portal (?) veins and also the bad fibrosis apparently shows on an ultrasound itself.  To define the specific drgree of fibrosis you need the biopsy.  I showed no signs of fibrosis , just a fatty liver on the ultrasound.  I also showed several small hemangeomas which is why I opted out of the biopsy (bleeding risk).

To mommaglow  : Thank you for sharing your your experience.  I'll consider it.

To meki and  marcia - in that tie frame I think my only risk factors were the staying at the women's shelter and having (had) a boyfriend who is a risk factor (though he claims he tested negative I am beginning to woder about that).  No tattoos or dental work.  But 25 years ago I did get the stupid ait gun thing in the military and I also was an O.R. tech and had a needle stick twice in 8 years (25 years ago).  I know that is a risk factor but keep in mind that I had a NEGATIVE HCV antibody test with normal AST/ALTs in 3/06

[Marcia2202]

According to my doctor, pretty much anything can bring ones ALT up to that level, i.e. alcohol intake the day before testing, certain kind of medications (even Tylenol), as ALT represents the amount of damage being done at the moment.

Combined with fatty liver, maybe it would facilitate ALT to rise more. (my own thought)

My ALT tested 136 in March, and I was not in the acute stage. I could NOT have contracted hep c during the past 10 years and most probably contracted it about 25 years ago.

I agree with Meki, that it was maybe the fatty liver, which made you feel the fatigue. Fatty liver has all the same symptoms ad HCV, as most of them are general symptoms of liver disease.

But on another thought. Do you have fatty liver and hcv or viral fatty liver caused by hcv genotype 3?

I am very interested to know which genotype you are, as fatty liver can be associated to genotype 3. 73% of genotype 3 suffer from viral steatosis. The good news, this one goes away with treatment, as it is associated to the genotype.

So there could be a correlation in your case.

Also, as asked by nygirl7, what risk factors could yo have had since 15 years. If there are no risk factors at all, then you can only have contracted it later. Tattoos, dental work, piercings, vaccinations they gave with the same gun to military people.

Marcia

[meki]

"""""""""""""In 3/2007 my ALT was four times normal (140s) and my AST was in the 60s.  My bilirubin count was above normal (no HPC test was given).  And in 3/08 I came up HPC antibody positive when a P.A. FINALLY noticed the elevated counts and ordered a test.  It seems (?) clear that the elevated counts in 3/2007 indicate that I likely contracted the virus between then and the test in '06

So what the heck?   Why was I getting those weakness attacks then?  Could the "negative" HPC test have been wrong?  If so why was all my other blood work normal?  Does the anti-body test have a high false negative rate""""""""""


Here are my thoughts... OK?

I think the Fatty Liver --- was probably the reason you were feeling bad... It's usually a long progression... But you might have had any other maladies that could have affected you - up to and including Lymes Disease... Etc ad infinitum.

HOWEVER --- I think because of this

"In 3/2007 my ALT was four times normal (140s) and my AST was in the 60s.  My bilirubin count was above normal (no HPC test was given).  And in 3/08 I came up HPC antibody positive when a P.A. FINALLY noticed the elevated counts and ordered a test.  It seems (?) clear that the elevated counts in 3/2007 indicate that I likely contracted the virus between then and the test in '06""""


That you were in the acute stage... with it being FOUR times the normal amount...

So I'm thinking that just prior to the testing - you were infected.

Those are just my thoughts...

Did you have ANY dental work done?

Did you have anything that would have been injected or any operations?

DURING THAT TIME frame?

Much luck to you.

Hugs,

Meki
PS> these are just my musings --- not facts... But conceptual thoughts.

[mommaglow]

I had a positive test a year and a half ago (though I did not know) at  points in the last year and a half while I was getting sicker and sicker, and the doctors were trying to figure out why, I had several complete blood workups, including checks of liver enzymes and function, all 4 in the past year and a half were normal, the only reason they ever diagnosed my hep C is that I started getting RA- at 29- they started questioning why- and bam it is becouse I have hep C.
    My Dr alsop told me that for years you can have normal liver tests. Like someone else said, and I have figured out the past few months- you will make yourself insane trying to figure out how and when you got the disease- now you need to focus on Tx- good luck and God bless.

[nygirl7]

PS
"Also I had an ultrasound and MRI follow-up  (I opted out of the biopsy)....Both tests indicated that there was no obvious damage other then fatty liver "


Although the test showed no damage - nothing can show fibrosis except the biopsy...the other tests will just let you know if you have tumors etc....

Since you are a vet just so you know...we've seen many vets who got hcv thru innoculations - what years were you in the service?  You could have had it a lot longer than you are even thinking - would THAT line up with the exhaustion attacks at all? In that case perhaps you really might want to rethink the biopsy situation if you arent a geno2 (or even if you are).

[Marcia2202]

Thanks for explaining...

Andrae.. Just a question, what genotype are you?


Marcia

[nygirl7]

Gosh I thought I posted on this thread but must have not hit submit.........shoot.

My husband was dx with acute hepc in the mid80s. He chose not to treat but was monitored for the next 20 years.  According to him the doctors always told him his liver enzymes were NORMAL. Now, I didn't know I had hep so I hadn't learned what that meant and never asked what the exact numbers were (he is dead now).  So apparently although it seems contrary you CAN have normal liver enzyme levels with chronic hep (although most of us are ultimately dx'd because our enzymes are whacked).

I know when he was in the acute phase of the disease he spent 3 months in bed and lost 30 pounds. But that was one time and after that he moved on to chronic. So I'm THINKING (guessing) that the exhaustion was unrelated because it happened several times.

Unfortunately I don't think anyone can give you a concrete answer. Most of us go nuts when we are dx'd trying to figure out where we got this disease...when we got this disease...but of course we have no idea and finally just realize the important thing is that we DO know we have it and we can treat it.  In your case it would make me nutty too but.......it's all supposition (false positive? normal enzymes?) you know what i mean I'm sure.

Just take your time and kick the **** out of this stupid disease...........that's the most important thing right now.

wishing I could give you an answer but like I said....I think you'll always be wondering and never really know for sure.

Debby

[Andromedae]

Small correction - the negative HCV antibody test was done on 3/06 - not 7/05 as I said above.  I'm finding all the test printouts a bit confusing to organize ;(

Andromeda

[Trinity4]

Sorry about he-she thing.  I always associate the VA with male gender.  Shouldn't do that.  

[Andromedae]

Marcia, On 7/05 my ALT was 19  and looking at the results there is a blank  entry for AST (which maybe means that they did not do it ??  Who knows - thank you V.A.)  and there is a negative HVC test as well.

on 2 /07 my ALT jumped to 204 and AST was 91 (nobody bothered to contact me to follow up until another test with similar results in 12/07 ).

I've also been diagnosed with fatty liver (yes I'm dieting) so that can mess with the ALT/AST results as I understand it (?)

Trinity :  I'm a she, not a he   Also I had an ultrasound and MRI follow-up  (I opted out of the biopsy).  Both tests indicated that there was no obvious damage other then fatty liver (I'm going to change my name to Patty Pate) .  The MRI was to follow up on some small spots found on my liver which turned out to be hemangiomas.  (nothing serious at all)

Comeagain:  I had 2 unlikely (?) risk factors in the period that you mention:
1. I stayed at a shelter for homeless women vets for a year .  I shared utensils from people with moderate or more mental illnesses (poor hygiene and poor habits of preventing others from being infected) and many HCV positives.  I know that is a very unlikely risk factor. BTW It was a bad couple of years but I've pulled things together  now.

2. I had a steady boyfriend who swears up and down that he his HCV negative but is in a risk factor category (recovering alcoholic and recovering cocaine user).   We had unprotected sex.  One of the rare times that I ever did this - I may be paying the price for that now.

Other than the above I have no risk factors at all in any way.

[Trinity4]

He said ALT - AST were NORMAL on 10/06.  I am assuming he knows what normal means.  As I mentioned, liver panel and hepc antibody test are 2 entirely different blood tests.  I is VERY unlikely that liver panel would show normal enzymes and hep antibody would be negative and he was still positive for hepc.  
Trinity

[Marcia2202]

I don't understand this...

1. Aren't there so many people with liver enzyme as low as in the 20ies who do have hepatits C.  

2. According to specialists even liver enzymes like 40, which are considered being in the 'normal' range are actually not normal.

Last, but not least, Andromedae did not mention the actual ALT result, so it could have been in the normal range, but still elevated.

Also I do not agree to the statement that normal liver enzymes indicate the non-existence of Hepatitis C.

Marcia

[Tallahassee]

Agree with Trinity.

Liver enzymes indicate that you didn't have Hep. C in 2006.

All the best to you

[Trinity4]

The one thing that jumps out at me is that the liver panel numbers are normal as well as negative on your hepc panel in 10/06.  I could understand if one or the other was read incorrectly but not both.  They are totally separate blood tests.  You may have been exposed in the later part of 06 and the enzyme numbers in 3/07 were indicative of something going on with your liver.  Bouts of fatigue do not necessarily mean you have had hepc.  You could have been suffering from an array of things and since you did not get a diagnosis 15 years ago it would be difficult to say what was going on with you.  Have you had a liver biopsy?  Do you have any damage to your liver.  That is one of the best gauges in determining how long you may have had the disease.  I'm not saying this a standard rule because so many other factors can effect liver health but for the most part the longer you've had the disease, the more liver damage.
Good Luck
Trinity

[Marcia2202]

So do I, I think the first test was a false.

Marcia

[comeagain]

Did you have any risks of getting the virus between 06 and 07 otherwise i think the test was false.

nice to meet u.

ca