I will stick to the medication 
. Thank you so much.
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Welcome to the community. Never feel embarrassed here, we are all here to support and try to help each other.
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Thank you Thomas. This is making me really emotional. Hello there, Im from the Philippines. I tested Hepa B reactive when I was 18yo, 15yrs ago. Now as per my recent diagnosis, I have a “chrome Hepatitis B - inactive carrier” with 98 IU/mL. To be honest this infection has been making me so so emotional these past few months. I really want to do masters in Australia and eventually work there. But this infection is such a hurdle, fear of rejection and fear that this dream would never come thru. As someone who has this infection half of my life (I didnt even know how I got this and informed by my mom that I did not had any hepa b vaccines before) this is too much, insecurities all over… 
is there someone here that can help reg immigration? I work not in healthcare but in construction industry.
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Dear @Riya,
Thanks for sharing your story. I know a few people with Hepatitis B who have come from overseas to study and it hasn’t been an issue. This has been discussed in other threads: Hepatitis B and Immigration/visa issues.
Hope this helps,
Thomas
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Hello, my name is Shoshana. I’ve had HBV my entire life but was always told I was a “carrier” and it was “dormant” until earlier this year at age 40. I was born in 1981 in the United States. My mother was Hep B and Hep C positive due to her IV drug use. My parents failed to vaccinate me at birth however I’ve read 1981 is when the vaccine was actually FDA approved. What irony! Fortunately, I knew this and vaccinated my own son when he was born in 2013. Both he and my husband are negative.
Anyway, I have active chronic Hep B but my viral load 4,873. My ALT 15, AST 27. My first liver ultrasound in Feb 2022 was normal with “fibrosis stage” 0-1. My liver doctor said that medication was not warranted at this time but that I do need to see her every six months for labs, exam, and ultrasound. She will perform my first Fibro Scan at my next follow-up as well. She wasn’t very good at helping me understand these values and numbers despite my many questions. Do these sound healthy and stable to the professionals in this forum? I can’t really tell from my hours of searching doctor google. : /
I’ve had a lot of feelings. Namely grief and rage that this is another inheritance of childhood trauma and neglect. But there’s nothing I can do about other’s choices in the past. It’s further motivation to abstain from alcohol and take exquisite care of my health.
I’m terrified of my disease progressing and reducing my life expectancy or causing an awful slow death to liver cancer! I’m encouraged to read the posts on her and the important work Dr. Tu is performing to find a cure one day! Thanks again!
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Welcome to the community, @Shosh. Thank you for sharing your story, hope you find the support you need here.
To answer your question, your viral load is relatively low (meaning you’re less likely to pass it on to others) and your ALT/AST levels are within normal range which shows that there is no liver inflammation. Your fibroscan shows no obvious liver damage. All of these are good signs that the infection isn’t causing liver disease and that you have a good prognosis. You should maintain monitoring so that you can respond if things change, but you should rest easy.
Cheers,
Thomas
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Hello all,
I just discovered this forum recently and I’m very pleased it exists. My situation is this: I was diagnosed two years ago with hepatitis B. It was initially an acute infection (and I have never had any symptoms) but unfortunately my infection didn’t clear so it looks like I’m now a chronic carrier. Psychologically it’s a huge burden to bear. I’m disappointed with myself for getting infected and for not getting vaccinated. But there is so little awareness about the vaccination for adults. Why is it that kids are vaccinated against hep b almost as a matter of course but doctors never speak with adult patients about this vaccine? Having said all that, I’m grateful for the medication, which has lowered my viral load to around 900 IU/ml. My liver values are in the normal range.
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Hi Barry welcome to the forum.
You are right, adult vaccine awareness campaigns are woefully in adequate in many countries and this is a recognized problem. You can of course feel disappointed that you were not vaccinated but please do not feel disappointed in yourself. You will find other people on this forum who also were not aware about adult vaccination.
You will also find others on this forum who lead very happy healthy lives with their chronic HBV infection as we have good medicines to control the infection and associated liver disease. These seem to be working well in your case. Try to give yourself a break…
Best regards,
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Thanks Andrew for your kinds words.
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Hi everyone. Im Jen, from Philippines, I am chronically infected since birth. My disease made me cry day and night. Im so hopeless. I dont want to leave my little one. Im pregnant now ,and my whole 3rd trimister of my pregnancy got affected because of the stress I have been through.
Hello everyone, I am 31 years old, from Iran. Recently I was accepted to a job offer from europe and that was my dream to start my dreamlife and have my new life which is the things I was trying to acheive. I asked to do a checkup and after that, boom! Everything collapsed… I found that I am infected by HBV. Dissapointing, truma and other bad thing is happenning, I cant sleep at nights anymore, I am lost, confused, scary and I dont know what to do to calm myself, hope being among you give me some hope and peacfully
I hope one day scientist can help us
Welcome @iamjen and @IWillBeCured,
Thank you both for sharing your stories. I’m sorry to hear about the stressful and heart-breaking experiences you’ve been through and hope you find the support you need in this community. Please read the posts others have written and feel free to join the conversations here.
Thomas
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Hello Thomas Tu, Im vera Oketch from Kenya. I want to first appreciate you so much for
Sorry, I accidentally pressed reply before I finished typing. Mr. Thomas kindly receive my appreciation for starting such a platform that gives hopes to people like myself. Honestly, Hepatitis b is not widely known compared to HIV in the world. This platform will give us a chance to learn, ask questions and get tips on how we can manage our liver to live normally as others.
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My name is Rob and I am from the US.
I first found out I was exposed to acute HBV in 1998 by a gastroenterologist that was running a lot of tests due to my severe intestinal issues. I can’t say specifically when or how I was exposed but maybe when I was getting tattooed several times at a friends house while at the time tattooing was still illegal in my home state due to outbreaks of hepatitis. I can’t say for sure if that’s exactly how I was exposed and is just a theory of mine.
My question is since we can’t donate blood after ever being exposed to HBV, are we also excluded from donating organs?
My drivers license has me as an organ donor and now I’m not sure if I can actually do that.
Also, I’ve signed up to donate my body to Science after I die but the donating company does state HBV as an exclusion so I’m also wondering if there are donating specifics regarding acute and chronic criteria. I guess I would need to contact the company for specifics.
Currently, I’m on prednisone for a muscle disease, called Polymyalgia Rheumatica (PMR), that I came down with in January 2022 and my hematologist and gastroenterologist are both concerned of prednisone reactivating my HB due to it lowering my immune system so they are regularly testing me.
Thomas Tu, thank you for creating this forum. 
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Hi @sloped876,
Welcome to the community and thanks for sharing your story.
Regarding your question, maybe @simone.strasser is best positioned to answer, but i believe organ transplantation is all possible even if it is from a hbv-positive donor. This is a recent review on the subject suggesting that recipients can take antivirals to prevent infection -HBV-positive and HIV-positive organs in transplantation: A clinical guide for the hepatologist - ScienceDirect
Personally, i take the view of signing up to be a donor anyway and letting people like Simone figure out the details should it come to pass that i become a donor.
Hope this helps,
Thomas
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Thomas, thanks for the article.
It was a long read but well worth the effort.
Thanks, again!
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Hello everyone, so happy to have found you.
My name is Scott, and I’m from the USA. In 2013 I was dating online and was not as careful as I should have been with a girl I went out with, taking her at her word that she did not have any STIs. Shortly after we were intimate, we decided it wasn’t going to work out and I started dating my now wife.
A few months into our relationship, I woke up one night covered in hives and went to the ER where they administered steroids and Benadryl. I thought I had acquired a freaky allergic reaction from something and after it passed, I thought nothing more of it.
A month after that, I had a routine physical exam with blood work where my doctor informed me my AST and ALT were both near 1000. I hadn’t experienced many symptoms other than fatigue, which I attributed to work stress. Followup tests revealed I had acquired hepatitis B and did not have immunity. I was told that I would more than likely clear the infection without issue as I was otherwise healthy and young (31 years old at the time).
6 months later, I received word that I had developed surface antibodies and the surface antigen was no longer detected and that according to the doctor, I was cured. My acute infection was relatively uneventful as fatigue was the only symptom I noticed from time to time. My wife was vaccinated, so she never caught it from me, and thankfully, my now 2-year-old son was also spared.
A year after my acute infection cleared, I had a bout of the flu and received a chest X-ray to check for pneumonia, and they found potential plural effusion and sent me for a CT scan. The CT did not find any problem with my lungs, but did find 2 subcentimeter lesions on my liver which they said were probably benign hemangiomas with no followup needed.
3 years later, after an injury to my back, I had an MRI of my spine, which again picked up these liver lesions. This time, they were twice as large (just under 2cm) and accompanied by two more scattered tiny (suspected) cysts.
My paternal grandfather and great grandfather both passed from HCC, so it was recommended I keep an eye on my liver, and I’ve been monitoring these lesions annually ever since. For 3 years there were only very minor changes to them, but this past year, one of the “cysts” grew from about 2mm to almost 2cm. Given this change, my family history, and the fact my father now has stage 4 liver cancer as well, continuing the family trend and making him the third consecutive generation to acquire HCC, I was referred to a hepatologist to review my recent MRI.
The doctor tested me for everything from tumor markers to liver function (all normal), and given my history with Hep B, he tested for HBVsAG, HBVsAB, and HBVcAB as well as HBV DNA. The sAG was not detected and I was reactive for the sAB (maintaining my functional immunity), but I was also reactive for cAB and they found <10 IU/mL of HBV DNA in my blood. I soon learned through my own searches (as the doc wasn’t getting back to me) that this is called occult hepatitis B (OBI), and that the virus was still hiding in my hepatocytes and replicating at low levels. I had not cleared it completely as I was told almost 9 years ago.
When I was finally in touch with a nurse, she confirmed the OBI diagnosis and told me just to keep following up annually and not worry as my risk for HCC or liver disease from this is very low. Yet, that statement seems to be in stark contrast to what I’m finding online in the very limited information on OBI. More recent findings appear to show a huge correlation between OBI and HCC in both the presence of and absence of cirrhosis and even with normal liver counts and low serum DNA like I have. I also see that it holds risk of reactivation.
I have been struggling to find conclusive information on OBI and what it means for most people who have it, because it seems to have a very low detection rate. I’ve been looking for a new doctor who is better informed about OBI and will actually talk to me about my condition, because I feel incredibly isolated and alone being told to just “wait it out and see if things get worse,” and having no one who seems to have info on what I’m going through. For context, my dad had 2 lesions on his liver in 2020, and was told to wait and follow up 6 months later, during which point they grew from just under 2cm to over 5cm and were non-resectable by the time his followup came around. 2 years later, he is stage 4 and it is now in his lymph nodes. So you can imagine my apprehensiveness to just wait and monitor for more growth. My dad, however, drank nearly every day of his adult life whereas I have never had a full alcoholic drink, nor been drunk in my life. I don’t smoke and I otherwise take care of myself. But he also was not exposed to HBV and I still am every day.
So, I’m just hoping to meet people who share my concerns and hoping I can find someone who actually knows something about OBI and what I should be expecting, how I should conduct my day-to-day, if I should be on some kind of treatment, etc. I’m also happy to lend a supportive ear to anyone who needs to vent or share their concerns, fears, hopes, information on this little DNA hijacker that likes to hang out in our livers, or just be here for anyone who wants to talk about anything (even non-hep B related) without worrying about any kind of stigma or judgment.
Here’s hoping they will be able to find a sterilizing cure sooner than later. Hope you are all well!
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Dear @Scott,
Thanks for sharing your story and sorry to hear all the stress you are going through. There is indeed little known about OBI and its effect on people, studies have linked it to a small but detectable increased risk of liver cancer. The majority of people with OBI will never notice it though and will live completely normally without any ill effect. Because the increased risk is so slight, it is difficult to see if anything (such as antiviral treatments) changes it without long-term and/or very large studies in situations such as yours.
The only other thing to be aware of is if you ever require chemotherapy, an organ transplant or otherwise severely immunosuppressed: you should be on antivirals to prevent any reactivation of the infection. This won’t apply to most people though.
I believe the recommended guidelines are being followed in your case, but I can see it is not ideal for addressing the non-clinical issues (e.g. the anxiety and fear). I hope some of this information does help you though.
Thomas
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I found out a few days ago.
Hepatitis B. I am 25 years old.
I am not married yet. Our general physician doctor said that there is nothing to worry about till 30 years. I have done a liver function test and it came back normal. I am a little scared.
Can advise.
I am Indian.
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