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377521 tn?1203473172

Test Results - Think I'm OK

I got my test results yesterday from the ultrasound and fibrosure.  It sonds good and my family physician seemed very optimistic. he is sending it all to a Hepatologist, but he did not see any reason for treatment or concerna t this point, even thoug my VL was very high last (19 million) time it was tested.

Here are the results...tell me wht you all think

Ultrrasound: Complete Abdomen Sonogram
  Fundings:  The liver has a normal appearance with no abnormal masses and a normal size (said other organs wer normal also)
  Conclusion:  Normal study

HCV Fibrisure Results:

Fibrosis Score                   0.26 (H)
Fibrosis Stage               F0  -  F1

Necroinflammat Act. Score   0.21  (H)
Necroinflammat Act. Stage   A0  -  A1

There was a numerous other blood test, but I think it looks good. I really don't know what it means, but the doctor was pleased, so I was too.

I was surprised seeing that I predict that I got Hep C about 35 years ago and have been a mod-heavy drinker of beer for many years.  I had expected the worse.

Of course, I still have the hep C, but may not to worry about treatment for some time.  I should have a results of the review by the hepatologist next week.


27 Responses
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264121 tn?1313029456
think...and as for the kidneys a friend of mine did have real trouble with his...thats when he found out he had hep.(was 2 weeks in the hospital)..
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I just posted a study on another thread about this.  Renal disease can and does present due to hepc long before anything is even symptomatic on the liver.  The percentage or renal probs with chronic hepc is high.
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190885 tn?1333025891
is there something i'm missing >??? yellow fin had a bx a few weeks ago...stage 1 grade 1 i think...and as for the kidneys a friend of mine did have real trouble with his...thats when he found out he had hep.(was 2 weeks in the hospital)..yellow fin should get that checked out right away...also i beleive yellow fin has cut down on alcohol..this causes all kinds of stuff...heres a site for that....www.learn-about-alcoholism.com   good luck...billy
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Avatar universal
I'm sorry.. I didn't re-read your information before my latest post and forgot you had a fibrosure.  Copyman is right...while a biopsy is considered more accurate, the test you had is reasonable.  I won't speak to the accuracy of the fibroSCAN and fibrosure, I'll leave that to others who know better.
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Avatar universal
the bioipsy it not the "only" sure way to find out how much liver damage you have. you could try and get a fibroSCAN instead. A good hepatologist can give you a fairly accurate asessment of how much liver damage you have without a biopsy, they can tell by your labs,radiology & physical exam. they have seen many people with different liver damage and they can tell, especially the older docs. throw in the fibrosure test you had and you can rest assured that you have little damage.
Helpful - 0
Avatar universal
Forgive me for being bold here...but you DO want a biopsy.  It's the only sure measure to determine what stage of liver damage you've incurred.  Your ALT/AST only tell you what your liver enzymes are and I think in 30% of the cases, the ALT/AST have been contradictory to the liver damage in either direction, as in higher enzymes with lower damage and lower enzymes with higher damage.  I've seen some people refer to the biopsy as the gold standard to go by in getting the most accurate picture of where you're at with liver damage.  There is one guy here who had normal ALT/AST...right up until a biopsy told him he was too far along for treatment and only a transplant would do.  I don't mean to be an alarmist, I mean to say get the full picture and then you can decide where you're at.  

Some doctors think ALT/AST is all the information they need...not true.  My GI wanted me to treat based on my viral load alone...also not a good solitary factor to base a treatment decision on.  He wasn't going to send me for a biopsy either.  I asked for it and I know where I'm at.

The other reason to have a biopsy is something to measure against.  If you find out where you are now and then do it again in 2-3 years, you'll know how fast or slow things are progressing, if at all.  

A liver biopsy, while invasive, is really a simple procedure for MOST people.  It's like a quick needlepunch in that grabs a sliver of liver if you will and pulls it out.  It's over really quick and mostly painless.  Mostly it's inconvenient because you have to lie on your side for 3 - 4 hours to prevent the possibility of bleeding.  Some get pain afterwards and most only have mild discomfort.

You COULD have a kidney infection.  And ... sigh...here's the other little reality that goes with HCV.  Sometimes it affects other organs and other systems in the body as well.  

I personally wish you'd get a biopsy.  You don't want to wonder about what is going on inside of you.  You want to know.  Well...I'm thinking you do.

Good luck sifting through everything.

Trish
Helpful - 0
377521 tn?1203473172
For those asking, I am 57 years old, genotype 1b.  Of course I want to feel very positive about the recent tests, I still feel that there is something wrong inside.  I still have the pain in my middle/right back (more like kidney) and fatigue.  Hopefully I have a kidney infection and that can be cured easily.  I'm going to the doctor later in the week.  I guess I am relucant to have the biopsy if the doctors are suggesting there is no reason.  (I don't have any word from the heptologist yet.) I really don't like the idea of the invasiveness of biopsy unless the is a serious concern.

You know what, as I write this I am knowing inside that I do have something wrong and I need to get checked out ASAP.

So the saga continues.
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Avatar universal
i have to disagree with what some have said here. your VL of 19 mil has NO correlation with how much damage you have or how fast you will progress. where it does come into play is when having a high VL it becomes harder to treat. also used to see how you are responding to treatment.  other then that VL means nothing! even though the ALT & AST usually dont mean much with extent of liver damage, having low LFT's  like yours are very positive and is probably why you have little damage. i have found the fibrosure to be very realiable on the low end so i would feel confident in your result. best of luck
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Avatar universal
I guess you have to take all your factors into consideration.  You don't say how old you are (unless I missed it) and what your genotype is.  Currently, genotype 1's require 48 weeks of treatment and have a 40 - 50% chance of success.  That means the first time you treat, you might not clear and you have to do it again.  Studies seem to show that the older you are...some say as you hit 40..it becomes increasingly tougher to succeed.  As well, a high viral load is more challenging to treat successfully also.  So you start throwing all your risk factors in there for a successful outcome and you have age, viral load and genotype.  The other thing to consider is there is no rhyme or reason to how fast this will progress for you.  You could be just fine now and in five years you could deteriorate.  The reverse could also be true... in five years you could still be just fine.

I'm Stage 1, Grade 1 and I'm 47.  My ALT and AST have been normal until this latest test which they went up to 49 .. not crazy but above normal for sure.  Anyway, I decided to treat now because if I have to do this more than once, I don't want to run out of time.  I also want to be able to put it behind me as soon as I can and focus on the rest of my life to do whatever I want to do with no health issue cropping up and changing my direction.  I'm getting it out of the way now because I can mentally and physically handle it and because my work situation is amenable to it, as in if I lose the job I'm on now, I'm okay with that because it's contract.  

You need to find out what your genotype is and then you'll know how many weeks of treatment you have ahead of you, whether it's 24 or 48.  Then you need to figure out when you can fit that into your life.  It's not a matter of if, it's a matter of when, in my opinion.  The decision is entirely yours, you just need to be aware of the realities so that you can make the one that's best for YOU.

Good luck.

Trish

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233616 tn?1312787196
ok I think the typical word to use here is ATYPICAl...it's my new favorite word.

the reason is I've had 5 diseases go undiagnsed in 5 years due t tests being atypical.

anyones labs can indicate degrees of damage that are or aren't there.

anyne can have 5 symptoms of liver damage, and still be pronouced fine if the 2 most classic symptoms are nt there...and labs are not remarkable. they can still be in an advanced stage of disease.

if yu want a non invasive get HR tofriroscan your liver, (that means a docs rder and.or trip to LA. Otherwise, get a biopsy, your labs and fibrosure are not the only indicators and not reliable for making decicions t treat.

assuming you did stop drinking cmpletely, and had little to no damage as defined by a 3 core biopsy, you might then decided to watch your VL and hope to treat with one of the new protease inhibitors to up your chance f cure, and cut dwn your treatment time and symptoms. However, waiting at that VL is more risky.. Mine was at 1.4 mil...and I didn't want t wait....many flks have been waiting because side effects can be a problem....but treating in 5 years when one is 3 times sicker is also a problem....

remember we aren't talking here about some toe virus that will eat your toenails off or turn then brown....we are talking about a virus that turns your most vital organ into a rock....you can live without a lot of things, including toenails, and brains...but the liver isn't one of them. It's called by what it really is and does....it's the LIVER.
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190885 tn?1333025891
if you have cut down on the drinking you could feel lots of pains for the next 6 months...hep c and alcohol don't mix at all with most of us...2 beers a day could be real bad... many of my friends told me it would have no effect drinking only a couple beers a day..they were so worng...and after you stop drinking all the way give it 6 months to a year to feel better...you could have lots of pains when you cut down or stop drinking..lots of the pains are brought on by anxiety from being an alcoholic....denial is a drag...billy
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86075 tn?1238115091
they indicate inflammation in the blood...like the viral load, it's better to have them lower then higher, but they don't necessarily tell you with any certainty- the amount of ongoing liver damage you have...a biopsy will tell you that...and I kind of disagree with some posters here, I think the fibroscan is a good liver fibrosis indicator...according to some recent studies...

what you had isn't a scan though, it's a blood test, the fibrosure test, and there have been some bad reviews of the fibrosure, particularly in the middle ranges of liver disease....

Alts and asts, enzyme levels, can be indicators though...people without this disease that have normal enzymes can be in the teens and twenties or less (a lot of labs say that mid-forties are normal, but many hepatologists dispute that number....to have them that high is really slightly elevated)..ideally, when people get their bloodwork done, an elevation in these markers will signal a problem to the doctor, who is ideally going to give you a hepatitis test once this happens, truth of it is, they don't always signal problems with docs, who don't know what they are looking for...some docs haven't had much experience with hepatitis, etc....unfortunately.

yours aren't bad...but you can have low enzymes and lots of liver damage...conversely...you can have high enzymes and low liver damage...there's not always a rubric you can go by in these instances....that's why you need to speak to that hepatologist for further testing, advice, etc...
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377521 tn?1203473172
Thanks.

Can anyone tell me what the AST and ALT numbers mean?
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86075 tn?1238115091
hey, this might be controversial to tell you...but that's okay..if you do have trouble with staying off the booze, AA is an excellent program that has helped millions of people...there are also other programs, counseling, etc...not everyone can do this on their own, but there are those people too, who have managed to do it on their own...just fyi.... I wish you the best of luck....
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377521 tn?1203473172
Can someone tell me what the AST and ALT numbers mean?  Are mine high, low or normal?

Anothere thing.  I have not completely quit drinking.  And, I have drank heavily for many years.  Just recently I started having pains in the middle/right side of my back.  Around the kidneys, I think.  Anyway I have pinpointed the pain to be after drinking as I did for the super bowl.  today was nearly unbearable.  I almost went to the doctor today, but am drinking cranberry juice now.

I guess the one good thing to come out of this is that I know I MUST stop drinking completely and I have committed to doing so.
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86075 tn?1238115091
hey, just so we don't scare this guy out of his wits! lol...

just take it easy, there is always a balance we have to strike between telling people of the seriousness of their situations, and to wait for all the results that are supposed to be in first, before anyone jumps to any conclusions...

cause yellowfin just doesn't know much at this point of the proceedings, only that his Ultrasound is good (way better then not good) and he has a high viral load, with fairly decent liver enzymes, which don't always tell much.

I *have* seen people with low liver damage have high viral loads, just don't go by too much at this point, till you get all the testing that needs to be done.

As we, just about, all have said on this thread, family doctors, internists, general practitioners, other medical specialties, etc etc just don't always know a helluva lot about Hep C. And I think they do patients disservices by telling them they are okay, cause who doesn't want to hear that? And we're afraid that some patients won't follow up with a hepatologist, etc etc....I'm sure you'll do all that you need to do, and find out how to proceed once you talk to some experts.
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409336 tn?1202425686
YOU MUST GET TO A DOCTOR OTHER THEN YOUR FAMILY PHYSISIAN. YOU NEED A BIOPSY. DONT RELY ON THE FIBROSURE RESULTS.. 19,000.000 MEANS YOU ARE IN A WORLD OF HURT...DON'T WAIT......KIRK
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377521 tn?1203473172
merrybe,

I know my VL is real high and that was one reason I thought the test results would be different.  I am waiting for my family doctor to talk with the hepatologist (Jonathan Schwartz of Portland OSHU) and give me some direction.  Today there has been confusion in the doctor Schwartz' office trying to make an appointment for me and the two of them have not talked yet.  I want to make sure I have every test they need before driving 7 hours one way to Portland.

nygirl,

I am not sure exactly how to read all the results I have.  The FibroSURE resluts are:

Alpha 2 macroglobulins, Qn:   194
Haptoglobin:   113
Apolipoprotein A-1:  150
Bilirubin, Total:   0.4
GGT:   46
ALT:   41

Then in my blood work it give this (of course there is a bunch more)

AST:  18
ALT:   35

Does this tell you anything?

YF
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179856 tn?1333547362
Nobody knows how quickly your liver might decompensate.  It can take 20 years to get to stage 1 or 2 and then only five years to become cirrhotic.  

You really should have a biopsy to get the most accurate results that you can, scans are not always accurate and you have seen people in here who have had them and then a biopsy and it's been off by at least TWO stages.  that's huge.

Until you REALLY know where you stand it's hard to make a good decision.  If you do not plan on getting a biopsy then I would advise you to treat.  You'd hate to later find out you were at stage 3 and fall over to stage 4.  You have a pretty high VL - what are your ast and alt?  I just can't remember everybody's stats...I don't know how others do it.  Plus if you were a heavy drinker in the past even though the liver enzymes might read low now when you are not drinking - it's really hard to tell what they were when you were.  As you know, they probably were sky high at that time. I'd find it impossible to believe you were only a stage 1.

Best of Luck.
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233616 tn?1312787196
glad to hear you are moving forward. Foresseeggod is right, nt all fibroscans are created equal....fibroscan and fibrosure are different, as are the doc reading them, and some only read a sample, not the whole liver.
non of the scans will reveal certain tissue facts, such as iron content,or benign nodules vs. cancerous...etc.  at the end of the day...a biopsy is still a better gauge even though I'm sure the new push will be for scans...less legal liability as well as non-invasive..

question is can you make good decisions based on them.
for one thing, 19 VL is high, and stats show higher means moe difficulty treating, more likelihood of damage progressing quicker....

think of it like this..  a ml of blood is very little blood....pour 20 million viral cells into in..instead of 2....it would be like if you looked on a map of the states. Now go you want your viral load t cover up just the state of Oregon, or do you want it to cover everything west of the Mississippi?

I'd be more inclined to at very least become as proactive liver wise as yu can, and maybe thin of right NOW buying some supplemental insurance.
If you buy it now, and then do decide to treat in six months (assuming yu still have a waait to get in to see Shwartz, then by the time you would need the drugs the supplemental should be past the 6 months for preexisting conditions...and so it should kick in as well.

In any case, if you postpone treating at that Viral load you could progress one or 2 tages in as many years....and that's assuming your scan was accurate, which they are not known to be.  
Not trying to scare you here, just steering towards more info than the "you'll be fine" crowd.  I wish doc would educate themselves, shoot straight and not try to dalm us when we need straight talk.
the person to ask is JmJM   who knows a lot obout the accuracy and how fast stages can progress. Meanwhile, take care or yourself....adjust your diet and drinking habits for longevity. It's more about how long do you want to live and feel well.
I'm more inclined to have quality over quantity....so taking care now means more painfree non invalid years....and that's what we most all want. We may have the disease, but we gon't want IT to have US, if you follow... take care.  maryB
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190885 tn?1333025891
thats real good news.....keep us updated...billy
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377521 tn?1203473172
Oh, I forgot to say that I am self employed.  I do have med insurance but it is expensive and should not change.  Sometimes I wish I would get fired, but I don't think that will happen.
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377521 tn?1203473172
Thanks Forsegood,  I am going to wait unti the hepatologist reveiws the reults and gives me direction.  I also talked with my doctor about the high VL (19,000,00) I had a year ago and he suggested another text, but wants to wait until we hear from the specialist just in case he want more.

As far as treating now becaues of better chances.  It is my understandning that the treatment is for hep C, not liver disease, Am I wrong?  And if not what difference does it make as long as the live deteriation is not to far along?

Helpful - 0
86075 tn?1238115091
hi, looking good, and maybe I didn't read your results well enough, but yes, you do have to see a hepatologist....we all want to be assured that we're in good shape, which is natural, believe me, no one hates doing this more then I do...

when I go to my internist he sees my labs and other tests, and tells me I'm in great shape too...my alt ast are in the 20s...and I've never had my VL go over 200,000...my ultrasound is great, etc etc...but then I had a fibroscan taking the actual fibrosis level I have, and I'm a stage 1-2...which isn't too bad, but I've waited long enough at this point, and I'm not getting any younger, plus I'm getting symptomatic....

Other doctors just don't know enough about this disease. A hepatologist does. Plus, a fibrosure test, if that's what you have done, are getting kind of known for their inaccuracy at times, especially in testing the middle stages of liver fibrosis. There are studies pointing this out. You probably need to take a biopsy (especially if youre thinking about waiting, you want to know exactly where you stand if you're thinking about waiting) or a fibroscan. A fibroscan will tell you the fibrosis level, but a biopsy will tell you that - and if you have fatty liver disease, or something else, because it's dealing with live tissue.

But anyway, a good hepatologist will look into all of these things. Because just based on the evidence you have now, you don't know all that much. Not to scare you, but people can have all that you have and look great on paper, and then be told they have a stage 3 or even 4 on a biopsy. Not saying this is your case, but you have to rule this out, you don't want to find this out later when you were in better shape today to treat.

And it's terrible that people are told to wait by docs (who don't know this disease) and they find out they are much more advanced then originally thought, I have been around and I can tell you that I have seen that over and over and over....you need all the knowledge available right now, so you can make an INFORMED decision as to how to proceed. If you are in good shape, then you just keep testing and keep a good eye on what's happening as time passes. Just my take.
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Avatar universal
Great news, congrats.  

jd
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