Just been diagnosed with Chronic Hep B - Need help

Hello @ThomasTu @MarkDouglas @availlant @john.tavis and Other Experts,

I have just been Diagnosed with Chronic Hep B. I was never aware of it. Due to holidays , all Dr are on holidays in Canada. Walk in clinic Dr’s are not very helpful.

I went through all my previously available blood results and found that in 2012 i was positive for HBsAG during a life insurance medical test. No one cared to educate me or inform me at that time. Life insurance was not denied.

Here are my current details

  1. HBsAG - Non reactive ( In my first blood report it came as positive.) Second blood test was done a week later where it came back as Non Reactive
  2. HBsAB - Negative ( 6.6 U/L )
  3. HBcAB(Total) - Positive
  4. HBeAG - Negative
  5. HBeAB - Positive
  6. HBV DNA Viral load - (Using Roche Cobas HBV Assay) Detected but below the lower limit of quantification
  7. ALT - 166 U/L - (Dr thinks this could be due to Fatty Lever)
  8. AFP tumor marker - 4 ug/L
  9. Liver ultrasound - Fatty liver - As per the Dr

Please help me understand where i stand.

  1. Why does latest result show me HBsAG Non reactive when a week ago it was positive ( Blood tests were done by different lab ). What does it mean?
  2. Do i have OBI or Mutant variation?
  3. What does HBsAB - 6.6 mean? i understand its below the limit.

Any guidance and help is appreciated.

Thank you

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Hi @bmj1982,
I will try and answer some of your questions. It is possible for your HBsAg test to be false positive or negative, because a week between tests should not change the results. I will do this test again with confirmation added. The first test that was non-reactive(negative) indicates that you do not have HBV. But the second result being positive indicates that you have HBV. So one test says you don’t have HBV then a week later another test says you do. False positives and negatives can happen with these tests. Having the blood work done at different labs should not necessarily affect the results unless for human errors.

HBsAb tests indicate whether someone has immunity/protection against HBV and can also be used to measure the level/quantities of antibodies one has. Anything above 10 U/l is considered strong. Your results of 6.6 U/l means you have a low antibody level and a low level of protection. If your HBsAg results come back negative, I will suggest that you get an HBV booster to help increase your antibody levels so you can build a strong immunity. Best, Bansah1

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Hi @bmj1982,

I am not a physician, but I’ll give you my opinion on what your situation is. Your doctor will know better.

You are right at the detection limit for HBs and HBV DNA, have antibodies against HBc and HBe but not HBs, and moderate ALT levels implying moderate liver inflammation.

You clearly have been exposed to HBV, apparently at least as far back as 2012, and as your DNA is positive, you have a very very low level chronic HBV infection.

The variation in lab values from different labs can happen. Different labs often use different assay kits that can have different sensitivities, and if a marker in your blood is very low, that can lead to discordant results.

I recommend you see your physician and ask her/him your questions as she/he will know your full case much better. There is no urgency to get this done immediately as your very low HBV infection will progress slowly, if it progresses at all.

I wish you the best.

John.

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Thank you for your insights

Thank you for your guidance @john.tavis. This is really helpful and assuring. I am struggling to find an appointment with specialist.

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@john.tavis @Bansah1 @bmj1982 I need help reading my results, can you help me please?


Dear @Chocolatebox,

I am not a physician and cannot formally diagnose clinical states. It is best that you discuss this with your physician.

My impression (not a formal diagnosis) is that you have HBe antigen negative HBV chronic infection. The anti-HBc and anti-HBe antibodies indicate the virus has likely been in your body for an extended time, the presence of HBs indicates either ongoing viral replication (more likely) or a naturally cleared infection in which HBs is being made exclusively from HBV DNA inserted into your liver cells’ DNA (less likely). The lack of anti-HBs antibodies indicates your body has not mounted a robust antibody response against HBV that would be part of the immune system clearing the virus.

I recommend asking your physician for an HBV DNA test. That will finalize the diagnosis and indicate whether you are eligible for treatment.

John.

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Navigating Hepatitis B, treatment oncerns & Studying abroad

Hi everyone,

I’m 33 year old asian female. I was recently diagnosed with chronic Hepatitis B. I’m still processing everything, feeling overwhelmed and learning about my condition, so I joined this community to connect with others who understand what I’m going through.

My test results are

HBsAg : positive
HBeAg : negetive
HBV DNA : 1269306 iu/ml
SGOT: 38 (within normal range)
SGPT: 29 (within normal range)

I don’t have any symptoms, my appetite is good, I exercise regularly and follow healthy diet but i had history of kidney stones.
My primary doctor has suggested me to consult gastroenterologist. However, I plan to move to USA for my master’s degree and prefer to delay treatmen for at least two years(I ll be on student loan). I’d love to hear from others who have been in a similar situation.

I have following questions

  1. Do I need treatment ?
  2. I am visiting Gastroenterologist this weel What I should ask himt any inputs?
  3. Have any of you delayed treatment for a while?

Looking forward to learning from you all
Thank you

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Hi @Katniss_L,
Welcome to the community and thanks for sharing your story and experience with us. We have all been there, and I remember that time as it was yesterday. It is hard initially, but it gets better once you get past the grieving state. Don’t be too hard on yourself, and allow your body to feel all these emotions. Only when it starts to affect your day-to-day life, then we have an issue.
Based on the results you have shared, I think it will be advisable that you start treatment as soon as possible given how high your viral load is. I don’t know how long this has been going on and whether you have an acute infection or not. The best point of action is to get the viral load as low as possible. Because the higher the viral load, the higher the likelihood of severe liver damage.
I will recommend a follow-up test and see the doctor, have a conversation, and see what they think. All this will be based on the numbers. The new guidelines recommend that patients with higher viral load should be treated, even if they have normal ALT and AST. You can ask him whether you have an acute or chronic infection, as that will help determine whether treatment is needed now. Discuss pros and cons of medications available. Talk about your plan to move and how that might affect you. What is your prognosis based on your results and what is the HBV care plan for you ?

May I ask, why do you want to delay the treatment? Current evidence shows that patients who start treatment early have better long-term health outcomes. Unless there is a serious reason like financial, access, or allergic reactions, etc., please do not delay treatment, especially if your viral load continues to stay that high. Let’s know how we can support you as you process everything. I hope you find this helpful. Bansah1

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Thank you, @Bansah1, for your thoughtful response and support. As my physician said I got Hepatitis B from my mother during birth as she has it. we both recently came to know about this.
However, I have some concerns about starting treatment at this time.I’ll be moving to the USA for my master’s degree, and there are several challenges I’m worried about.

  1. Based on my research 90 days medicine is allowed from my home country to USA after that every 90 days end i have to import medcine, also worried about customs restrictions and affect on securing work visa.
  2. Getting treatment in the USA is expensive. More importantly, I will be sharing housing with other students. Visiting hospital regularly and taking medicine in front of them might draw unwanted attention & discrimination.

Because of these factors, I want to delay treatment for at least two years until I have a more stable situation that is once I secure job I can move into my own place and start the treatment . Any advice on handling medication discreetly and navigating these concerns? I’d really appreciate any insights.

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Hi @Katniss_L ,
Thanks for sharing this and I acknowledge it. Let us consider this further. I understand the limit on how much medication you are allowed. But do you know you can actually bring more than just the 90 days? You will need to declare it, and you will be asked to pay taxes on it, and that will be all. I am not sure how that will cost, but it is an option. While you are still back home, maybe try and see if the University does have a clinic or what community organizations are available in the state you will be studying in? You could find this information and others through Google and the university’s resources page. You can use the search for a provider feature on the Hepatitis B Foundation’s webpage to find a provider, and you can call or message them to find out what services they provide for people with student visas and the costs, if any. You can do all this before you get here. This will help decide your medications. My biggest worry here is your viral load. It is very high and the damage that might be doing to your liver over time. That bothers me a lot.

Treatment in the US can be expensive, I agree, but there are organizations that provide free services to patients. Some of them have collaborations with hospitals so they can link you to care whenever it is needed. There are a lot of people, even young people who take medications daily, and I don’t think you will be required to take your pills in front of your roommates either. You are doing this for yourself and your liver, that should be your focus and not necessarily on what people will think or say. Do you love your liver and your body or not? Do you want to do everything within your power to live as long as you can? If yes, then please try to avoid giving so much weight to what others might think or say. It is your life, and live it as best as you can. Discrimination and stigma are real, but we must have an “I don’t care attitude about it” and focus on what our priorities are or what is important to us. Sorry for writing too long, but I hope you take some of these points into consideration as you decide. Your viral load worries me and that is why I am not recommending or agreeing with you on pushing any treatment for another 2 years.

The final decision is up to you, but I will advise against that if your viral load remains that high. Best, Bansah1

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Thank you for your detailed response and for your concern, @Bansah1.
I really appreciate your advice and the options you’ve shared. Next week, I’ll be consulting a Gastroenterologist and will follow their recommendations regarding my condition.

By the way, do you have any suggestions on what further tests I should undergo to better assess my condition? I want to make sure I’m monitoring everything properly before making any decisions.

I’ll also look into the university’s health services and available community organizations, as you suggested. I completely understand your concern about my viral load, and I will take that into account when making my final decision. I’ll do more research to explore my options before I move.

Thanks again

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Hi @Katniss_L,

Thanks for sharing your experiences and sorry to hear about your worries. It would be great to hear from some US-based clinicians that serve immigrant communities about how this can be addressed (@Suwang88, @rgish). Ideally, you should not need to delay treatment because of this issue, but only base it on how well it improves your health.

Regarding taking your meds, it really hasn’t been an issue with me. You can store your meds in your own private space and take them in your room with a glass of water. In any case, I very often take my meds out in public in front of strangers with no worries. Most people aren’t thinking about you when you’re doing something. If asked, you could answer “it’s for my liver health” and just leave it at that.

Thomas

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Hi @Katniss_L
You are welcome. We are here to provide as much support as we can. Please, don’t feel alone. You have a place here in this community.

Maybe retest for HBV DNA/Viral Load, ALT, AST, and Surface Antigen quantitative in a couple of months. Have a conversation with your doctor regarding your concerns as well. Keep us posted on how things go. Thanks, Bansah1

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Thanks you @ThomasTu , I really appreciate your insights and reassurance. My main concern is less about strangers and more about how housemates denying space, classmates alientaing me, or even future coworkers might react if they find out. I worry about potential stigma, being treated differently, or even facing issues at work, like losing a job over this.
Sorry if I’m asking too much, I’ve just been feeling overwhelmed with these thoughts and really want to understand how others have handled this.

I’d also love to hear from @Suwang88 , @rgish and US-based clinicians about how treatment access, insurance work for immigrants, especially international students and any US based hepb community/NGO helping immigrants.

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Thank you so much @Bansah1. I really appreciate the support, it truly means a lot to know I’m not alone in this. I’ll definitely consider retesting in a few months and I will discuss everything with Gastroenterologist. I’ll keep you all posted on any updates.

Thanks you and this wonderful comunity !! :pray:

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Hi @Katniss_L,

Yes, I completely understand. In most cases, the fear is worse than the reality, but that doesn’t make it any less real. These concerns have been discussed in other threads that you might find useful:

I hope these help,
Thomas

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Thanks @ThomasTu
You’re right, the fear itself can be overwhelming, even if the reality isn’t always as bad as we imagine. I’ll check out those threads. It helps to know that others have navigated similar concerns. Appreciate the support, Hoping things get better with time.

Thanks you and this wonderful comunity !! :pray:

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Hi- just chiming in. Where will you be in the US? If you can get a prescription from a doctor here you can get tenofovir or entecavir for less than $20 a month. Without using insurance. Can use GoodRx coupon code at a local pharmacy or you can use Costplus mail order
Based on your lab tests I would favor starting treatment too. Do it for yourself , don’t worry about others. Your viral load is high and though your liver enzymes are technically within normal limits. That could be high for you. I’m a petite Asian woman and my normal ALT/AST are under 10 so mine went up to mid 20s I would think something is going on.
I take my meds at home but also keep a bottle at the office and bring w me when I travel. You can put them into unlabeled bottle or dispenser if you want. Nobody’s ever asked me what I’m taking. I take vitamins too.
Hope that helps! Thanks @ThomasTu for the call out
Su

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