confused by results

hi i am first time poster. been reading forum for a while. my heart felt good wishes go out to all. sorry dont know short forms. diag. in june 06 with hep c. probably got it 30 plus years ago. devistated! worried sick about my 2 teen boys until their results came back neg. it was hard to figure out how to get their bloodwork done without telling them. i felt i had sentenced them to a miserable life! as well as hubby of 24 years! had an ultrasoud of liver, supposed to be okay. went to a internalist and had blood work done. he said the viral levels were too low to do genotyping. liver bloodwork was normal. he wouldn't give me any levels though he said they were not worth doing any additional tests. i have had reumatoid arthritis for at least 7 years and a lot of major spider veins in feet and legs. what would you people do? just carry on and pretend i don't have hep c?  i do tend to drink too much and am exhausted at times. kids race motocross and play rep hockey! busy schedule! sorry to ramble on. i think it happens with a first poster! please advise!

[mikesimon]

I would definitely strongly suggest that you stop drinking. With hep c it's like throwing gasoline on a fire. Then, I'd see another doctor preferably a hepatologist but, if not, then a gastroenterologist. If you can detect the hepatitis you should be able to type it. Also, I would insist on getting your hands on your blood work. It's yours and there is no earthly reason why you shouldn't have a copy. Don't allow any doctor to give you that BS. Don't panic - just stop or, if you can't manage that, drastically reduce your alcohol intake and see someone who knows about hep c. Good luck. Mike

[jools57]

I'd stop drinking...I don't drink a whole lot, but any social drinking, i've decided is not worth any damage it may do...my viral load is fairly low. 190,000. I've never heard of them not being able to genotype. what is your viral load?...maybe someone else knows since i'm new here too...learn as much as you can about hep c...try not to get too freaked out...easy to say, hard to do i know...but you've found a good place with lots of knowledgable people...Blessings

[GrandOak]

Welcome.  Keep in mind that non of us are doctors, only patients dealing with this insidious disease at various stages.

Mike has given you some good suggestions.  Some of your symptoms sounds alot like HCV and definitely worth pursuing further.  Keep in mind that HCV and alcohol have similar effects upon your liver and it's not a good idea to possibly double up on the assault against it.

[bobbyullc]

LIKE YOUR NAME,
WHY NOT MAKE LIKE YOU DO NOT HAVE IT? 4 MILLION IN THE US HAVE IT AND MOST DO NOT LET IT RUIN THEIR LIVES. IT IS VERY HARD TO GIVE IT TO SOMEONE ELSE. IF YOUR LEVELS ARE SO LOW AND NO LIVER DAMAGE AFTER 30 YEARS MAYBE YOU SHOULD JUST LIVE EACH DAY LIKE YOU ARE NORMAL WHICH YOU ARE. KEEP AN EYE ON LIVER LEVELS ECT. AND LIVE.

[jacksonpotter]

I am a first time poster myself.  I do know that the day I got the phone call from my DR  ( which was my 50th birthday) I quit drinking.  I have been a heavy drinker all my life.  Had a great birthday party and drank myself silly.  It has been hard to quit.  I think I was a functioning alcoholic.  Lots and Lots of family and friends that drink every day.  I do know that I want to be around awhile.  I am still awaiting appointments and results and answers but in the meantime I know I have to take the first step in cleaning my act up.

[NYgirl]

I used to drink a LOT and after I found out I had this and saw what changes had occurred in my liver - I quit.  I've been on 58 weeks of treatment and now realize how important my liver really IS.  I had never thought of it before - like all "kids" back when I got this 25 years ago I thought I was going to live forever.

Wow what a shock to find out I am mortal!  So I have NO intention of ever drinking again as alcohol is POISON to your liver. Not much debate about that fact.

So it's up to you if you continue or not.

If you don't have symptoms (I did not) and you don't have bad liver damage you won't really most likely need to treat right away.  

I don't understand why the doctor can't tell you what Geno you are...if they have enough of them to tell you are positive why can't he give you that info?  Maybe there is a reason and I just don't know why.

I had both of my kids tested right away.  I told them exactly why I was - I was exposed to HCV.  Needing to know details isn't something I optionned to them. Considering how many people have this disease and have NO idea how they got it (no obvious IV drugs or stuff that you would think of) and 4 million of us have it - they didn't question anything.

It's a matter of EDUCATING people on this disease and realizing you can get it from the nail salon or the dentist - not JUST from drugs you know?

Best of luck.

[crazycanuck]

thanks people. thanks for the words of advise. i think i need to go back to my g.p. and get a referal to someone who thinks hcv is as serious as i think it is. just turned 50 and would like to see at least 80! will keep in touch

[Kalio1]

Not worth doing the test? that doctor sounds like he doesn't know what he is doing. If he won't do the test, you don't know what genotype you are or what your viral load is. You need a PCR DNA test so you know genotype and viral load. You need a biopsy to see if ou have liver damage now.
An ultrasound won't tell you anything about liver damage, it can't see it. All it tells you is if there is a mass or tumors.
Drinking with Hep C is an incredibly bad idea. It is like jet fuel on the viral fire. Keep in mind those spider veins you are seeing can be signs of liver damage. I'd get to a doctor who will give you the info you deserve. Can you get a copy of the test he did do? I wouldn't listen to this doctor because you have no idea what your liver status is at this point. The only way to know is with a biopsy.
He tells you your viral load doesn't warrant more testing, but he didn't do the viral load test? That makes no sense.
Please, realize this disease is known as a "silent killer" because it can cause liver damage with no symptoms at all. Just because you don't have symptoms does not mean your liver isnt being damaged by the virus, especially adding alcohol to the mix.
The fact that you have been drinking "too much" with Hep C is very dangerous to your health. It's like a time bomb ticking.
Ignore it? I sure wouldn't. You have signs and symptoms right now that warrant a biopsy. The "tiredness" you are feeling and the broken blood vessels are signs.
What did your bloodwork show? What was your AST/ALT numbers? What were your platelet measurement?

[Kalio1]

Dragonslayer gave you some great sites to vist with lots of info. to be had there.

I'd like to add one more, clinicaloptions.com. You have to sign up but it is free and there are some great videos that are easy and informative.

[Pdilly]

Mike and NYGirl and others have given you some solid advise.  I too was just diagnosed in March and have had this 35 years or more.  I was worried sick about my kids or husband having it.  They testing negative much to my relief.  Do quit drinking as it will only make things much worse.  You need to focus on your family and your health.  You need to muster all the strength you can to accomplish that.    I do the 6th treatment tomorrow.  Got my 4th week PCR today and I am undetectable.  I am soo so happy.  I really wanted a drink but you know.... I am going to go out to dinner instead and drink a non-alchoholic margarita and pretend.  

Pat

[Kalio1]

Hep C is a non linear disease, it affects different people at different rates of damage and speed. You need to know if you have liver damage,if you have been drinking "too much" and are Hep C positive,plus you have increased spider veins, the thyroid problems, the fatigue all are issues that can be liver related. From your post it doesn't seem like you have had a liver biopsy, have you ever had one?
An ultrasound does not tell you what you need to know when it comes to liver damage, it can see masses and fatty liver and tumors. A lot of people believe that having a "good" ultrasound means this includes seeing if they have liver damage, and it doesn't, only a biopsy can tell you that for sure and even biopsies are not perfect in their ability to determine overall liver damage. You can also have blood tests that can give you some information, scans that give some info, but the biopsy is the most informative. Most people who have hep C are advised to have liver biopsies every so many years if you are not treating, and if you are treating your biopsy information lends information to you on your decision to treat or not and on your treatment approach. It is an important tool in your disease management.

[DragonSlayer45]

I agree with Kalio, you should see a hepatologist or Gastro and get the bloodwork done so you know genotype, VL, etc. I would also recmend a biopsy as it is the gold standard to determine liver damage. An ultrasound will not tell you how much liver damage you have. Like you heard from everyone else alcohol and HCV do not mix, like gas on a fire as Mike said. This is a slow progressing disease but adding alcohol will speed it up. As far as your kids and hubby the chances are they most likely do not have it but getting them checked is a good idea. HCV is passed on through blood contact. I would also recomend you check these 2 sites to start, they are excellent resources:
http://www.janis7hepc.com
http://www.hepcchallenge.org
These are probably 2 of the best out there. I suggest you read all you can so you make an educated decision in how to proceed. Ultimately this is a personal decision for each of us, but educating yourself is the best thing any of us can do. I do not recomend following any doctor blindly without knowing and understanding about it first. Not every doctor is knowledable about this disease. That's my 2 cents anyway

[jmjm530]

Unfortunatly, Hep C is not a very well understood disease even within the medical community. My internist seemed surprised when I told him I did my own injections on a weekly basis :) As suggested, do yourself a real favor and see a liver specialist who lives and breaths Hep C. They're called hepatologists and can usually be found in your larger teaching hospitals.

All the best,

-- Jim

[mikesimon]

I just want to give you my opinion on Kalio's assumption that you need a biopsy. That might be jumping the gun just a bit. See a reputable hepatologist and let him/her advise you as to the appropriateness and value of having a biopsy. I have had a bunch of them without any pain or trouble but there is a rsik with the procedure and not every diagnosis of hepatitis immediately calls for a biopsy. I think the wise thing for you to do is to find a good hepatologist and listen to his/her advice and then, if you want, run it by here. We have a lot of knowledgeable people but we're all just patients. Mike

[friole]

I assume you are in Canada?  I think there is some good support for hep C testing done there, but we have had other members here who had to go to the bigger cities in Canada to find that help.  

Do try to get copies of your test results and post them here.  We love to dissect those reports. If you do in fact have active hepatitis C, the biopsy is the only way to tell if your liver is damaged.  I wish you well.  Please try to get the referral to a hepatolgist.
frijole

[crazycanuck]

hi frivole
they said i am definitely positive for hcv. but the next doc. who is a internal medical doc. said the viral levels were not high enought to genotype? does that make sense? said to just get checked out again in a year. my concern is if it is that low could i not try to get rid of it now easier? i live in a small town i will have to try to find a hep doctor somewhere else. i have to see a reumatoligist in january maybe he can help. i have heard hep and reumatoid arthritis can be linked somehow. maybe i cleared it myself and i have antibodies for it.
time will tell. i am canadian by the way.

[Kalio1]

"but the next doc. who is a internal medical doc. said the viral levels were not high enought to genotype? does that make sense?"


No, that does not make sense. Sounds like he is giving you the proverbial "run around"
It also sounds like he is discouraging you from treating without even having the proper information to even advise you either way, maybe there is a financial reason he would do this? I don't know how your health system works, but this is a pretty expensive treatment regimen. I have heard from other Canadians that their docs said things like they had to have a higher viral load in order to treat, which is also suspicious since viral loads flucuate constantly, and is NOT a factor in determining if you should treat or not. You can have a very low viral load and a lot of liver damage or a very high viral load and very little damage. I'd get to a Hep C saavy heptologist for a consult.

Take care, good luck with it.

[friole]

Here is a website that where you can get all the basics on the various testing. I know they test the genotype by taking the blood sample, amplifying the virons and putting them on a strip that contains antigens for all the various genotypes. Your specific virus will react to one of these antigens and that is how they test.

The first thing doctors do is run an antibody test.  All that one does is tell you you have been exposed.  That's it.  Antibodies with hepatitis C are not like you think of with other antibodies.  Normally an antibody means that your body has been infected and your body has developed resistance - an antibody.  with hep C the virus mutates and the antibodies don't work.  That is why we need antiviral meds.

The next test is a PCR test.  This test amplifies the virus and counts it per mililieter of blood.  This is apparently what your doctor says they can't do.  These PCR tests can be sensitive to 2 IU (international units) per mL (Mililiter).  

You need to get a copy of the tests that hgave been run and post the results in a new thread.

Here is the web address:

http://janis7hepc.com/index.htm