Hep B Blog

How to Find a Liver Specialist Who Really Knows Hepatitis B

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

If you have chronic hepatitis B or are newly-diagnosed, it’s important to see a liver specialist who has experience with hepatitis B.

Having a specialist with hepatitis B expertise on your team not only safeguards your health, it also lessens the stress of having a chronic liver disease. “My specialist gave me all the possible scenarios, but most importantly, he gave me my life back,” one hepatitis B patient recalled.

When first diagnosed, it’s often a primary health provider (PCP) or for children a pediatrician who gets the test results and calls to break the news. Doctors may run additional blood tests and/or immediately refer you to a liver specialist. They may recommend a specialist who accepts your insurance or practices in the same healthcare system, but you may have to do some research to find the best specialist to treat your hepatitis B.

There are two types of specialists who treat liver diseases:

  • A gastroenterologist is an internist who has trained in digestive disorders including the liver, but how much liver expertise a gastroenterologist (GI doctor) has varies based on their training. It’s important to find out if they specialize in liver diseases.
  • A hepatologist is a physician who specializes in the liver. This doctor has the most expertise and should be up-to-date about new treatments and clinical trials. But not all hepatologists have treated hepatitis B. Many will have treated hepatitis C, but not hepatitis B, so you need to ask.

Tips for finding a specialist:

  • Are they in the Hepatitis B Foundation directory? The foundation has a Physician Directory of liver specialists who treat hepatitis B around the world. These doctors have voluntarily signed up  for the database. It is not an exhaustive list, there may be hepatitis B specialists in your area who have not yet joined the directory.
  • Call the practice ahead of time and ask questions. How many hepatitis B patients have they treated? Do they participate in any clinical trials?  Are they aware of current monitoring and treatment guidelines for hepatitis B?
  • What’s the doctor’s reputation? Does anyone in your community see a liver specialist for viral hepatitis? Whom do they recommend?
  • Will you actually see the specialist or an assistant? Do you see a specialist only if there is a need for treatment? If you go to a teaching hospital, do you see the doctor or an intern, fellow or resident?

You are entering into a long-term relationship with someone who may care for you for many years. You need their expertise, but you also need to feel comfortable working with them. Do they listen when you speak and make eye contact? Trust and rapport are very critical.

“It’s really important that they don’t judge me,” one hepatitis B patient explained.  Another patient said that finding a doctor who spoke his language, or had an assistant who was fluent in his language, helped immensely.

Once you identify a specialist, here are some questions to ask:

  • Is the specialist accepting new patients? How long do you have to wait to get an appointment?
  • What hospital or lab do they use, and are they convenient for you? It’s important for you to always use the same lab so you have consistent results that allow apples-to-apples comparisons.
  • Will the doctor call you with the results or will a nurse or other assistant communicate with you?
  • What would you like your care plan to be? Will you go for blood tests and then see the specialist? Typically, hepatitis B patients get blood tests once or twice a year to monitor their liver, unless they are undergoing treatment.

How to design a long-distance care plan if the specialist is far away:  Sometimes, the best hepatitis B specialist is a few hours-drive from where you live, but distance doesn’t have to be a deal breaker. Many people see a specialist for a first visit, and afterwards simply have their PCPs or local labs email lab results to the specialist. For this remote healthcare relationship to work, your PCP needs to be willing to partner with the specialist. Also, your specialist needs to be open to telephone consultations with you as needed.

Technology matters. Sharing medical records and lab tests electronically make a remote relationship work smoothly. If there are firewalls between practices, find out how to ensure your PCP and specialist share your medical records. Be prepared, you may have to be the conduit if the two healthcare systems don’t talk to each other.

Insurance and cost: Ideally, the hepatitis B specialist closest to you accepts your insurance or is in your provider network. That doesn’t always happen so finding out the charges in advance is important.

  • Will the specialist bill your insurance or will you need to pay the fee upfront and manage the insurance reimbursement yourself?
  • How much do you have to pay out-of-pocket if the specialist is outside your network, or if you are not insured? Some specialists charge a lower fee to uninsured patients. You may be able to have an annual consultation with a specialist and bring your lab results.

One hepatitis B patient reported he was not entirely happy with the specialist his PCP referred him to. “At the time, I had great insurance so all the tests he ordered weren’t a lot of money out-of-pocket,” he said. “But then I changed jobs and I couldn’t afford all of his tests, and he wanted me to go on treatment though my lab reports didn’t justify it.

“I went looking for a new one and found one in the Hepatitis B Foundation’s website,” he said. “I had to drive farther to see him, but his knowledge and patience were very comforting and he spoke my primary language. He really helped me regain confidence in life. ”

Prepare for your visit: Before you see the specialist, put together a list of questions (see sample questions) and have your lab reports available — either bring hard copies or call ahead of time to make sure the doctor has access to your latest labs and medical records.

After you meet with your specialist, take some time to reflect. Are you happy with the doctor? Did he or she communicate well? Are you clear about what you need to do in the weeks and months ahead to take charge of your health? If the answer is yes, congratulations, you have assembled a good healthcare team.

Comments on this blog are closed. If you have questions about hepatitis B or this blog post, please email info@hepb.org or call 215-489-4900.

8 thoughts on “How to Find a Liver Specialist Who Really Knows Hepatitis B”

  1. Hello, this is Arjun from Chennai – India and my mom is infected with HVB last 3 months back we found it and she is taking antiviral medicine but still she is experiencing sever stomach pain and we are not happy with the current doctor whom we are Consulating. I’m really worried about her. Is there any specialist in India for the same ?? Is there any way to make it ineffective or cure it completely?? Please help with the same

    1. Hello: Please check our Physician Directory at http://www.hepb.org/treatment-and-management/physician-directory/ to find hepatitis B experts in India. I hope there are some near you!
      I am sorry about your mother’s stomach pain. Some antivirals, such as tenofovir, do cause nausea, what type of antiviral is it?
      Please talk to a doctor to see if it is the antiviral, or perhaps another medical condition unrelated to hepatitis B, that is causing her stomach pain. Good luck.

  2. Hello,

    I’m trying to find out more about my condition.

    Recently I was supposed to get some surgery and pre op procedure asked for several blood test.

    I got tested for HBV, HCV, HDV and HIV.

    Everything was fine except I was discovered with delta hepatitis antibodies. I was never vaccinated for B, so I was not surprised to see I don’t have antibodies or antigen for it, but Delta ???

    Everybody knows Delta Hepatitis requires B hepatitis virus. I was HBV negative (no antibodies, no antigen) but still positive for delta…

    I went to see a hepatologist (university professor) and skilled in this. He said it is a major discordance and everybody else agrees and ordered some more test – all possible tests for B hepatitis, including DNA for HBV.
    I also redone HDV test for antibodies and RNA HDV. I was also scheduled for Fibromax and Fibroscan to asses liver condition, which I am planning to do this week.

    The 2 results for Delta have not come yet, I am waiting.

    For B hepatitis everything came up negative. No viral load, no nothing.

    ALT and all the other usual liver test and blood panel perfectly normal (except some high hemoglobine and hematocrit but the hematologist said nothing to worry about at this stage).
    Normal bilirubin.

    I am puzzled, scared to death and frustrated, because nobody can tell me anything except to wait for delta antibody, viral load (which will take some more time), Fibromax and then to sort it out. It kills me.

    I am from south eastern europe, where B and D hepatitis are considered endemic, but I have been extremely careful my whole life, never went to have my manicure done for fear of some blood contamination. Never done drugs (only smoked regular cigarettes, no drinking (like in 1 glass of wine a week).
    I am 45, never felt better in my whole life, and except a mild Hashimoto’s, treated and under control I have never had any major health issues. I am 160 cm, overweight (67 kilograms) but otherwise normal.
    Prior these results I was about to start running in order to lose weight and be more active. The surgery I was planning was a profilactic histerectomy for andenomyosis, but nothing urgent.

    In the last 10 days I’ve been reading articles like crazy and still couldn’t find anything like my case, except some vague considerations in some very specific professional research papers.

    I know about OBI and precore mutations in B virus, and it might be my case (which makes everything even more scary) but I can’t find and real stories like mine.

    I feel like I am doomed and loosing my mind. If Delta antibodies didn’t show up I would have been considered perfectly fine, and even fit to donate blood, because I am completely clear of B virus!

    The reason of my post is: is there anyone here who expereiced something like this?
    I know delta is not prevalent in USA but still, maybe I can find out something.

    So, is there anyone here who was completely negative of B hepatite markers and still find out he/she is infected? What tests did you do and how did you manage your condition?

    Any help or contribution is much apreciated.

    Thank you!

    1. Thank you for writing to us. I know how scary and confusing this must be, especially with limited hepatitis delta information available. It seems like your doctor was being overly thorough testing you for hepatitis B and D for the procedure you were undergoing. It sounds like what is most likely the case, is that your hepatitis delta antibody test was a false positive, this can happen. As you know, hepatitis delta cannot exist without the hepatitis B surface antigen, which it needs to survive and reproduce. The delta antibody test is a test that will be positive if you have ever been infected in your lifetime, it is not necessarily a test to determine an active infection, which would be impossible for you if there is no HBV DNA in your body. Were you tested for the hepatitis B core antibody (HBcAb)? This would tell you if you were previously infected with hepatitis B. If you were positive for the core antibody, there is a chance that you were infected with hepatitis B and D simultaneously, but cleared both infections. If your hepatitis D antibody test returns positive again, you may consider getting it run again by a different company. The Hepatitis B Foundation actually has a program called Hepatitis Delta Connect, which included a website with patient information, http://www.hepdconnect.org. You can read more about hepatitis delta there, and please email connect@hepdconnect.org if you have further hepatitis delta questions. Best wishes to you!

      1. Thank you very much for your answer.
        The results for the second testing so far are:
        Antigen for HBe – negative

        Anti – HBc electrochemiluminiscenta (ECLIA)- negative

        Anti – HBc – IgM electrochemiluminiscenta (ECLIA) negativ

        DNA HBV (cantitativ)LC Plasma EDTA / Real-time PCR (TaqMan) versiune 2 – undetectable (less than 20 UI/ml, sensitivity for this test 9UI/ml

        HBS Antigen – negative

        Ag HBs (screening) – negative

        Anti – HBs (cantitativ)
        (ECLIA) UI/L < 2 <10: Negativ (absence of imunitaty)

        The only B test I am still waiting is Antibodies for HBe.

        ALT 20
        AST 18.6
        BILIRUBIN 0.85

        I pray you are right, it kills me to leave like this.
        I just hope I am not some kind of strange situation with some precore or mutation B virus.
        Once again many thanks to you.

          1. I would like to update my situation.
            The most recent test proved I am HDV negative. Most probably the first test made at another lab was either a false positive or an error.
            I still don’t have HDV viremia, it will come latter, but I am pretty sure it will be negative. The tests made for Fibromax are all normal, I couldn’t calculate the score because I don’t have access to the site, but I don’t imagine it could go wrong when all results were perfect. i will ask my doctor to make the calculations.

            What I learned (the hard way) form this experience is that fasting lowers cholesterol from 220 to 170 in just a few days. I’m kidding, but I was mostly unable to eat and the results for ALT, AST, bilirubin and cholesterol came back even smaller than 5 days ago. 🙂 Diet IS the key to most health problems, but surely, not dramatic fasting like I did.

            And, of course, For sure I will get vaccinated and so will be my whole family.

            Thank you for your support, it was pure hell these last 10 days, I couldn’t eat or sleep, I felt like I was experiencing a slow death.

            Much love to you and health abd a big hug and my whole sympathy for anyone with hepatitis. I will be a strong advocate and supporter for your cause. I pray doctors find a cure for Delta hepatitis and for all the people who have it. I pray people get vaccinated and do regular blood test.

            All the best to all of you!

          2. Good news! We’re glad we could support you in any way, and am sorry to hear about your stress! Keep staying on top of your health and doing your research. Thank you for your advocacy, and we certainly do hope that in the next few years, there will be more treatments for hepatitis delta patients, and a cure for hepatitis B in the next 5-10! Best wishes.

Comments are closed.