My doctor tells me I have Hep C and not to worry about it!

[worriedsilly]

So I went for my annual physical and, although I'm generally in good health, my doctor tells me I have hepatitis C. In the next breath he tells me not to worry about it. My liver is in good shape and I don't need to think about treatment til i start seeing problems with my liver. I'm 52 and he tells me it can be a while before treatment becomes necessary.

I'm reading about liver transplants and how tough the treatment can be and freaking out. Can I really wait? Shouldn't I jump all over this? 

[Tim Horn]

Wait a minute... let's back things up a bit.

You say you went to your doctor for an annual physical, that he tested you for hepatitis C and and that the results of the test are positive? Did you also receive CONFIRMATORY testing?

Testing positive for hepatitis C virus (HCV) antibodies is only half the story. Having antibodies simply means that you've been infected with the virus at some point in the past. However, approximately 20 percent of people infected with HCV actually clear the virus on their own -- yet they will continue to test positive for HCV antibodies, probably for the rest of their lives.

The key here is to undergo confirmatory testing, notably HCV viral load testing to look for the actual virus (and the amount of virus) in a blood sample. If the HCV viral load test confirms the presence of the virus, you have an active infection that will require monitoring and treatment, if necessary.

So, before we go any further, you might want to communicate with your doctor to find out if you're simply HCV antibody positive or have completed the necessary testing to confirm active infection. And do you know when you were exposed to HCV? This is another important part of the treatment equation -- if you were infected recently, you might benefit from immediate treatment.

Please stay in touch,

Tim Horn

[worriedsilly]

Thanks for the reply Tim.

I totally missed that part of the conversation with my doctor. I've got a call into him. Fingers crossed.

[Tim Horn]

Worried:

Let us know when you hear back from your doctor.

Tim Horn

[worriedsilly]

Hi Tim.

I spoke with the nurse practitioner at my doctor's office this morning. She said I had an antibody test and a reflex test and told me I definitely have hepatitis C, but I'm really not sure what that means. What's a reflex test?

Thanks again for the help. This isn't fun and so helpful to have somebody to ask questions.

[Tim Horn]

Worried:

A reflex test can be ordered by a health care provider when just one test isn't enough to confirm a diagnosis. In this case, your doctor initially ordered a hep C antibody test and, if it was found to be positive, gave the lab permission to run a PCR test to look for the actual virus in one of the samples you provided when you had blood drawn. In this case, both your antibody test was positive, as was your PCR, or "viral load," test.

So, yes, it sounds as if you've been diagnosed with chronic hepatitis C infection.

Before we go any further, feel free to read a bit about hepatitis C, including the ways in which its treated, by clicking here. You won't likely need to make any decisions immediately, so read up, make a list of questions, and feel free to ask them here -- and, of course, with your doctor and nurse practitioner.

Let us know if something comes up, in your reading, that isn't clear.

Tim

[sophiedog]

I was reading this thread because a similar thing happened to a good friend of mine.  I am still confused though.   

If worried has chronic hep c infection then why would doc say to wait to treat it -- or not worry about it at all?  It seems like it's only going to get worse, right?  Or do you think doc is waiting/hoping for it to clear itself?

[Tim Horn]

I was reading this thread because a similar thing happened to a good friend of mine.  I am still confused though.   

If worried has chronic hep c infection then why would doc say to wait to treat it -- or not worry about it at all?  It seems like it's only going to get worse, right?  Or do you think doc is waiting/hoping for it to clear itself?

Sophie:

First off, I really can't speak to the exact conversation Worried had with his or her doctor. That said, I seriously doubt Worried's doctor was being as cavalier as is implied in the original message.

Chronic hepatitis C in an infection that slowly damages the liver. Most people infected with HCV remain stable for decades, without any major symptoms or signs of liver damage. In fact, the majority of individuals living with HCV may not go on to develop cirrhosis in their lifetime, provided they don't have other viruses (such as HIV) or confounding health issues like alcoholism. Roughly 70 to 80 percent of people who have been infected for up to 30 years have done well without treatment.

Let's wait to hear back from Worried, as I think it's best to address his particular situation. He may be referred for a liver biopsy or, perhaps, a non-invasive scan to better determine the health of his liver. This is the sort of information many doctors rely on, when deciding whether treatment is necessary.

Either way, Worried will need to be followed regularly by his or her doctor, now that a diagnosis of chronic HCV infection has been made.

Tim   

[worriedsilly]

So my doctor told me to come back in six months for a regular checkup. Should i push for the stuff you suggested right now?

I was pretty reckless with drugs and stuff about 25 years ago, so I'm guessing that is aroundwhen I was infected. Sounds like it isnt uncommon to still be symptom free that makes me feel better.

[Tim Horn]

Worried:

I think the first order of business is to have a long conversation with your doctor about your diagnosis -- it seems as if you walked away from your last visit with a lot of questions that probably should have been addressed there and then.

One thing to think about is whether it's best for your current doc (I'm assuming he's a primary care provider) to follow your hep C, order and interpret any necessary follow-up tests (such as a liver biopsy) and treat the infection if needed. While some primary care docs have experience monitoring and treating hep C, many do not -- it might be best for you to see a specialist, such as an infectious disease doc, hepatologist or gastroenterologist, on a regular basis to make sure you're tackling your hep C the way you should.

There's absolutely nothing wrong with asking your PCP if he has a lot of experience in the hep C management arena and, if not, requesting a referral to a specialist who can provide you with the care you need.

Given that you've likely been infected for at least two decades, you'll definitely want to be proactive in figuring out the overall health of your liver. My advice would be to familiarize yourself with the basics -- all of which are covered in our lessons, including genotypes, liver function tests and biopsies -- so that you can ask good questions when you sit down with your doctor (either your PCP or a specialist) next.

Tim 

[worriedsilly]

My doctor is NOT all that familar with Hep C so I'm now looking for a specialist. My doc's office gave me a couple of names. Is there any resource for finding a good doctor?

[hep_mom]

Hang in there worried. You can go a long time before you really need to start treatment!

[frankfromatlanta]

I just heard from a friend that his doctor described Hepatitis C progression like falling off a cliff. You can go years without a problem but it can do some damage very quickly making it to late to have treatment. I've been going every six months for checkups. Is that often enough? Should I be considering treatment sooner rather than later?

[truckman]

Hi. truckman again my doctor told me thru recent test that,my liver biospy is showning no scarring and my viral load is really low,its 330,000 which he said is really low.I have been living with hep c for bout 7 years now and no progress. My doc said treatment is not a option right now,so what can i do to help stay healthy? And is it possible to live with hep c and not be treated?

[elvis]

Friend,
Get a new doctor. Get blood completed that shows your viral load and other enzyemes that are elevated in your blood. Do not ignore this now, the healtier you are the better chance you have of eraticating HepC from your body.
I've lived with for over 30 yrs and go to Northwestern Medical in Chicago and I think they know what there talking about.
Also check out Sovaldi along with Ribervin, gamechanger and no side effects.
All the best.

[buddybear]

No side effects ?? You are kidding. I just finished the triple threat two weeks ago, Peg, Rib and solvaldi. I could go on for the next hour about the side effects of these drugs, but I'm not. I suggest you google the side effects and decide for yourself if treatment is something you want to consider. As for myself, I choose treatment because I wanted to get rid of the "Dragon", and I did. I'm hep c clear, but if it comes back on me, I don't know if I'd treat again or not. All the side effects I've had were straight down the line just like what I've read on google. You are your best advocate ! Don't be intimidated by the doc, ask questions and do the research. Good luck to you on this journey.

[rainbowray]

Hi Worried,
Sounds like you have had this over 20 years and did not know it. I have had it 43 years and am now getting treatment cause when I got a fibrosure blood test, it showed stage 3 damage to my liver, which is to be expected after such a long time but still a reality check. Go to a Hepatologist, they run all the critical tests.

Buddy had bad side effects because he had Interferon in his combo. There are treatments without interferon, and new ones coming soon. It depends on your liver condition to decide how long to wait. Get educated. A good diet, no alcohol , some exercise is all good for the liver. Artichokes are the best food for the liver. Eat them regularly.
I like the fibrosure or fibroscan tests for the liver. I had a biopsy about 35 years ago when the fibrosure blood test and fibroscan were not invented and it was a freaking downer. I had stage zero damage at the time and was insisted upon by several doctors to take the Interferon/Ribavirin combo which has devastating side
effects. I refused it, I educated myself, ate good, took some good herbs and lasted 43 years.
The good treatments are out there now, I believe you should seek it.

[buddybear]

Sovaldi has about a 98 percent cure rate when taken with other drugs. I did take the interferon shots but I had more trouble with side effects from the ribavirin. I still have bad days when I feel like I'm still taking the meds. The doc told me that the interferon would start leaving my system in seven days but the ribavirin would take about six months. I've only been through with the treatments for two weeks and I've had the rash associated with the ribavirin but I started drinking tons and tons of water and after two days the rash is clearing up. It is so very important to drink ALOT of water as it will make a big, big difference in the way you feel.



   

[lporterrn]

Hi,
I noticed that this 2011 topic was reactivated, and since a lot of years have passed, I am going to lock this one. Thank you everyone who shared new insights. Hope to see you on other posts.