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Why finding a specialist, learning about your liver health, and keeping tabs on it are key first steps

By Marijke Vroomen Durning, RN

Now that you’ve been told you have hepatitis C (or hep C, also known as HCV, for hepatitis C virus), you may be wondering what comes next. While every person’s care is individual, there are some steps common to nearly all people who are diagnosed with hep C.

1. Find a Specialist

Specialists are likely to be more familiar with managing and treating hep C than primary care physicians, explains Anurag Maheshwari, MD, a liver disease specialist at Mercy Medical Center in Baltimore, MD. “Once the family care doctor has the blood test that shows you what your genotype and viral load are, you ought to go see a specialist after that.”

There are three types of specialists who often treat patients with hep C: 

• gastroenterologists (specialists in the digestive system)
• hepatologists (specialists of the liver)
• infectious disease specialists

In addition to their familiarity with hep C as a condition, specialists’ offices are experienced in working with insurance companies to approve hep C prescriptions for their patients, which can be an issue, says Mark Mailliard, MD, chief of the gastroenterology and hepatology division at University of Nebraska Medical Center in Omaha. “The pre-authorization to acquire the medication can be quite a burden to an office and it requires a fair amount of documentation,” he points out. Many times, the first application for the treatment drug is rejected, so the specialist’s office then has to submit an appeal. 

Your specialist will be your partner in care, so make sure you find one you feel comfortable with — and can communicate well with, too. 

2. Know Your Genotype and Liver Status

There are several types of hep C, called genotypes. The blood tests done when you’re first diagnosed tell your specialist your viral load, or how much of the virus is in your blood, your genotype, and how well your liver is working. The various drugs and drug combinations have success only with particular genotypes, making your genotype the first step in determining your treatment course, says Maheshwari.

Another step in your hep C journey includes determining how much (if any) damage your liver has sustained due to the virus. Your specialist may do either a procedure known as transient elastography or a liver biopsy — or both — to determine the extent of the damage before going over treatment options with you. 

• Transient elastography. This test (brand name FibroScan) is a type of ultrasound. Using the ultrasound probe, your doctor measures the stiffness of your liver. It’s non-invasive, doesn’t hurt and requires no advance preparation.
   
• Liver biopsy. For a liver biopsy, your doctor numbs a spot on your abdomen and inserts a long, hollow needle through the skin to take a small sample of tissue to be examined under a microscope. Liver biopsies used to be considered the gold standard in patients with a confirmed hep C diagnosis, but over the last several years, the need for this invasive, potentially riskier test, has been questioned. Discuss with your provider what they think of using liver biopsy compared to other markers of liver damage.

3. Keep Tabs on Your Liver Health

Not everyone diagnosed with hep C is treated right away, even though all are candidates for treatment, Maillard says. Because of the difficulty that some people face in having their treatment approved, some time may pass between your diagnosis and when treatment starts. If this is the case, your specialist will then monitor your viral load and liver function for a while before starting treatment.

Your specialist will compare your test results with your baseline, or first, results, to see if changes are occurring. Each new test result is compared to the ones before. If you find yourself in this situation, there are some steps you should take to try to stay as healthy as possible while helping your specialist monitor your status:

• Don’t skip blood test appointments.
• Continue seeing your specialist as recommended.
• Make any recommended lifestyle changes, such as exercising, losing weight, quitting smoking or avoiding alcohol.
• Check with your specialist before taking any new medicines, as many drugs are processed through your liver and may cause serious damage.
• Control any other health issues you may face, such as diabetes, high cholesterol, etc.
• Ask your doctor which signs and symptoms you should watch for, and report any changes to your health right away.

Receiving a hep C diagnosis can be overwhelming, but your specialist can help get you on your way to recovery. Learn more about the steps involved in hep C treatment and which treatments are currently available. 

Published on March 1, 2016. Updated on April 5, 2017.

Marijke Vroomen Durning, RN, has written articles for numerous healthcare sites and is the author of Just the Right Dose: Your Smart Guide to Prescription Drugs & How to Take Them Safely.