My Hep B Flare Has Brought Back Deep Fear

Living With Hep B Mental Health
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Reliving 2020 – My Hep B Flare Has Brought Back Deep Fear

I feel like I’m reliving 2020, and it’s taking me to a very dark place again. Let me explain.

I’m a 35-year-old African American woman living in the U.S. Back in March of 2020, during IVF testing, I was unexpectedly diagnosed with chronic hepatitis B at age 29. It was one of the hardest, most painful times in my life. Somehow, I pushed through it and slowly climbed out of that darkness. Since then, I can count on one hand how many drinks I’ve had since my diagnosis.

Over the 5 years since diagnosis, my viral load has fluctuated slightly but never alarmingly. It’s never gone over 13,000 IU—until now. In March 2024, it was just 747 IU. But to my shock, in July 2025, it jumped to 57,800 IU—the highest it’s ever been. My AST is 19, ALT is 20, AFP is 4.4, and my fibroscan shows a KPA of 3.6 with a CAP score of 236. My liver enzymes are still normal, and I’m HBeAg negative and anti-HBe positive. Also, Google isn’t helping it’s scaring me to death!

Still, all I can think about is liver cancer. I’ve never had a spike like this, and it’s terrifying. I recently learned that my sister—who had and cleared hep B—believes we both contracted it between ages 12–15 from our stepfather. He has passed away from diabetes, not hepatitis. Our mom is negative.

I want to be completely honest: although I’ve avoided alcohol, I haven’t been eating the way I should. Over the last year, especially while dealing with stress and weight loss, I’ve been eating poorly—just whatever I’ve felt like, not really thinking about my liver. I now wonder if that played a role. :disappointed:

I’ve also been on Zepbound to lose weight, and I was taking immune supplements (elderberry) and not sure if that triggered something. On top of that, I have an unreleated hyperthyroid condition Graves’ disease, which had been in remission for 10 years, but seems to be flaring again. :sob:

My doctor isn’t starting medication yet and wants to monitor things since my liver enzymes are still in range. But mentally, I’m struggling. I work in corporate America and usually function at a high level, but right now I feel myself slipping into depression. I’m constantly thinking, What if I have liver cancer?

I do have a loving partner who accepts me fully, but she doesn’t truly understand what it’s like to live with this. The fear is isolating. I’m scared, and I don’t know if my anxiety is making it all worse. I just need some people to talk to who understand!

Thanks for listening.
—T

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About the Just diagnosed or new to the community category
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Dear @SheLaw20,

Welcome to the Forum and thanks for sharing your story. I’m not healthcare professional but would like to say that do not take supplements, do not stress, do not smoke and avoid alcohol. This life style will only worsen your problem. Instead eat lots of fruit, drink your own hand-made natural fruit juices and fluids. Do light exercise and pretty good walkings whether in the morning or in the evening, this will relieve your stress, make your mode and help you sleep well. Good sleep is very necessary.

Scientists on this forum will connect with you soon.

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On the positive note, unlike others your body seems to have control of the virus without medication. Viral load tends to fluctuate but you are being monitored by a doctor so that’s good. Look to the future when a possible functional cure or even a complete cure is found. Be positive and live a healthy lifestyle. Many of those living with hepb will say the same I am sure.

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Hi @SheLaw20,
Welcome to the community. We hear you. Living with HBV is a life changer for many of us, so you are not alone. HBV viral load can fluctuate due to flare ups from time to time. Your results indicate that everything seems to be normal aside from the viral load.

Did you say you started an immune suppressant (elderberry)? Immune suppressants can increase viral load because they weaken your immune system. And since you are not on treatment, it is your immune system that is controlling your HBV. Maybe hold off on the elderberry for some time and see if things improves. It is never too late to make a change, no matter how small it may be. Try and take care of yourself by eating well, limiting stress, eliminating smoking, and drinking. Please, seek help if things begin to affect your life daily. Please, remain under care, and let’s hope things can get back to where they were. I am also glad to hear that you have a supportive partner. While they might not understand what we are going through, we can all definitely use their support.

I hope this helps. Bansah1

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Thank you so much for your response. I have stopped the elderberry all together. I was thinking that it was helping but it likely was not. Prayers that things will improve soon. I am a very busy professional and travel a lot so while I am having an emotional set back at this juncture my work will force me out of this funk I’m sure. I am thrilled that I found this forum! It is always good to speak to others similarly situated. I’ll keep everyone posted!

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I think Elderberry was taken as an immune supplement, not an immune suppressant. I don’t think it does much either way so I’m not sure it’s the reason for your spike in hbv dna.

Viral load can fluctuate but there is a growing body of evidence that you should be on treatment anyway regardless of alt/ast levels to reduce hbv integration into your own dna.

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Thank you for your response! Apparently, my GI wants to “monitor” things and not start treatment suddenly. I am open to treatment if that is what is needed to protect my liver in the future. :sob: I have been a nervous wreck with all of this. :sob:

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Hi @SheLaw20

Welcome to hepbcommunity forum. Thank you for sharing your journey about chronic hepatitis B. At this moment, your current HBV status is HBeAg-ve chronic hepatitis or we call as immune reactivation phase according to EASL guidelines 2017. Though your liver enzymes are normal. It may be due to fluctuations of liver enzymes. This may be due to the fact that our body immune systems are weakened from chronic stress or drug induced immune suppression that result in wild type of HBV increased replication as Nawab , tomkk and Bansah1 have mentioned before. The other reason is that you may have mutant viruses at the precore region of ccc DNA(precore mutant) during viral replication which can produce mutant HBeAg that is not detected and neutralized by anti HBe and make more viruses multiply which we call immune escape.

You don’t have to think or worry about the past events that can’t be reversed. It’s a good thing that you analyzed your own causes of what made our liver conditions get worse. You should have to change your lifestyle to make health better.Most people living with hepatitis B have very little chance of developing liver cancer if they receive timely and proper treatment with healthy lifestyle. I also had experienced with HBeAg-ve chronic hepatitis during 5 years ago and started treatment with antiviral drug (TAF) daily and everything got better and good quality of life.

You should consult with your doctor to consider and make decision for starting antiviral medication.

I hope this may help you.

chul_chan
Chulapong Chanta. MD. Pediatrics.

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@chul_chan Thank you so much for your response. I have been under a lot of stress lately I must admit. Quick question my GI who works in the hepatology division wants to “monitor” things at this juncture. My next appointment (well besides the ultrasound which is next week) is In January of 2026. Do you think that is a safe amount of time to wait? Is it a guarantee that my virus has mutated or could it be stress triggered? Lastly, I have out of the country trips scheduled for the end of the year do you think I need to cancel those with all of this? Besides the extreme anxiety with all this I feel fine. I will be reaching out to My doctor with my concerns as well.

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Dear @SheLaw20,

I join everyone in welcoming you to the forum and thanking you for sharing your story. I’m really sorry to hear how much impact hep B is having on your life.

Indeed, 6 months is the standard time between monitoring. However, if you feel that waiting is disruptive to your life, it may be worth reaching out for a second opinion. The Hepatitis B Foundation has a directory of physicians specialising in hepatitis B care: Physician Directory (U.S. & International) » Hepatitis B Foundation

HBV DNA levels can naturally waver up and down, and may be due to many things (including stress, other infections, mutations in the HBV, etc.). It is often hard to figure out what may be causing these events though.

There’s no reason that I can see that your out-of-country trips should be cancelled. What exactly would you be worried about?

Hope this helps,
Thomas

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