INTRODUCTION THREAD: People affected by Hep B

Dear Thomas and Other Hep B Survivors,

Context: Past results since March 2021:

  1. HBsAg Screen: Confirmed “positive abnormal” from the blood bank results.
  2. Hep B Core Ab, Igm: Negative
  3. Hep B Surf Ab Quant: <3.1. (Low).
  4. Hep B Core Ab, Tot: Positive Abnormal (reference range: negative)

I have not yet been advised to take medications. I see my gastroenterologist in June as a precautionary measure and for “peace of mind” (recent colonoscopy was fine) and I visit my primary next week. My primary noted that my past 2 years of blood work have been normal, including liver enzymes and tests for cancers and diabetes because I WAS obese 3 years ago.

Now I have new results, updates, and some questions.

New test results: HBV DNA RealTime Abbott

Hep B Quantitation: 320 IU/mL
HBV log10: 2.505 log10 IU/mL

  1. Are these numbers a positive sign? hopeful? concerning? dangerous?
  2. Do these numbers help me to understand how long I have had the virus (e.g., 3 months, 1 year, 10 years, 25 years, since birth)? I am 52 and was diagnosed March 2021 by a blood bank donation.
  3. Do these numbers help me to understand if I can transmit the virus?
  4. Do these numbers provide any hope of one day being in that miraculous group where the infection can “spontaneously clear itself from the body” (FAQs about Hep B by Immunization Action Coalition, St. Paul, MN).

As a side note, for the past 2 years prior to diagnosis, I have been eating more healthy, exercising regularly, losing weight, and doing more mindful breathing exercises. I’ve never been a smoker nor do I consume “hard” alcohol and I might have a glass of sweet wine once every few months. But…

I have a history of high blood pressure (as do family) and I take medication for cholesterol and potassium. My grandfather died of prostate cancer and grandmother died, I believe, from liver cancer. I am not sure of all the illnesses my parents had before they died.

As always, thank you for patience, listening, and sharing.

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Hello everyone ,
I’m Kevin , 25yr old
I was diagnosed wit hbv in 2019 when i donated blood. I rushed to a heptalogist and was advised to wait for 6 months and repeat tests. I still tested positive after 6 months.
My LFTs have been normal even though i have a viral load of 29000 IU/ml. and HbeAg negative.
The doctor did not recommend any treatment and has asked to monitor and do test every 6-8 months.
how long before i need to start antivirals or any treatment?

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Welcome Kevin to the Hep B Survivors Group! You are fortunate to know early at 25 years. I just found out at 52 this past March after donating blood. Part of me wishes I never gave the blood. But that would have been endangering my own life and the life of others, so I am glad to know this information now. I am just really at a loss for how I got it which is enormously stressful and that stress is causing other problems of course (mostly in the belly and mental exhaustion).

This Forum has been incredibly helpful and I am very grateful for Thomas, Joan, others, and the Hep B Foundation.

I encourage you to stay engaged in this forum. I use this forum along with medical visits to put everything in context for my own mental health.

Stay safe.

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Dear @kevin ,

Welcome to the forum and thanks for sharing your story. You’re doing the right thing by having a specialist and maintaining monitoring.

More information is probably required to find out if you’re going to need treatment or not. This should include a fibroscan and/or an ultrasound to see if you have past liver damage. This and the long term trends of your lab results go into making the decisions on whether to start treatment.

There are also other things to consider like if you’re going to be willing/able to take a pill a day from now on (or until a cure is discovered). This is a discussion between you and your specialist.

Hope this helps,
Thomas

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@ThomasTu Thankyou for the advice

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2 posts were merged into an existing topic: EXPLAINER: Lab results and their interpretation

Hi everyone!

I am Christian, one of the many Hepa B - stricken adults. I currently live in Southeast Asia and have been living with the virus for almost two decades already (just turned 25 years old this May).

I just want to share here my experience recently regarding one of the biggest restrictions my illness imposed upon me. Also hoping if I can seek any advice to anyone here in the community that may have the similar experience on the below and overcame it (or found a way around it).

So I got a job opportunity to work abroad, specifically in Malta (Europe) in the field of audit. This comes as a rare opportunity since many firms and companies are wary to hire expats instead of locally, so I took it. Unfortunately, on the last step of the hiring process, I got denied by my local clinic here in my country a medical clearance due to the illness, saying that Europe does not allow hepa-b carriers to work there (How true is this?). They advised me to seek a waiver from my employer (in Malta) stating that they still employ me despite the illness. Unfortunately again, they denied me a waiver and just wished me luck on my future endeavors. I was heartbroken as I have spent relatively large funds of my savings and time and effort but to no avail. I understand that they (employer in Malta) may be wary of any health risks regarding my illness, but on my case, it is not as easily communicable versus COVID-19. And I also take maintenance and taking care of my health as well to lessen or minimize the effects of my illness.

I am on the course of accepting the above situation, but I am still holding on to my dream of working abroad, as my family is not that well-off and I wanted to provide more to them, and my salary here in my own country is not enough. If anyone here has the same experience and overcame this, I would really appreciate your advice on this matter.

Thank you everyone, and hoping that we can be cured of this virus in the future.
Christian

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Dear @Ajaxplus,

Thank you for sharing your experiences and welcome to the forum. I am saddened to hear about this disappointing experience. We have some instances where people have been discriminated due to their status - How have you dealt with discrimination because of your HBV status?.

Regarding people with hepatitis B being able to work in Europe, they definitely are allowed to: I myself worked in Germany for 4 years while seeing a German gastroenterologist too.

I hope one day you will be able to realise your dreams of working abroad.

Yours sincerely,
Thomas

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Hi,
I am 47 yo and have known for 20 years. I have never told anyone besides my family and healthcare providers about my status. It is good to be able to finally let that burden go. I don’t know how I got it. My mom is neg. I was born in Vietnam but moved to the US when I was 2. I have 2 healthy kids. I live in Virginia. My recent labs show an increase in my DNA from 500 to over 9000. (I have had DNAs in the 2000s with highest at 3350). I have decided to find a new hepatologist after waiting months to finally get scheduled to see my current one. I don’t know that any of the hepatologists I have seen specialize in Hep B. I have not started treatment. I am E antigen neg and E Ab pos. My ALT is 32. The highest it was is 38 which was 4 years ago. All my other labs have been ok except I do have high cholesterol. My last 2 fibroscans and all my ultrasounds have been fine. Thank you for all your comments. I have found the video Dr. Tu posted on Hep B lived experience and updates very helpful. I am hoping I did not make a mistake in delaying the start of tenofovir because I was afraid of possible renal impairments. Kim

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Thanks Thomas.

I appreciate your reply regarding working in EU.
Hoping that sooner or later I will be allowed to.
In that regard, did you inform your employer regarding your condition? And if you encountered any restriction imposed by say local law or by clinics regarding your condition when you first applied?

It’s quite jarring the discrimination faced by Hepa-B carriers worldwide, especially those coming from third world countries. Hoping that the stigma surrounding us be cleared.

Warm regards,
Christian

Hi hope4us, thanks for sharing your story and your concerns. I’m glad to hear that you have 2 healthy childrena and that you’re healthy yourself, despite having chronic hep b. So sorry to hear that you’re having trouble getting an appointment with your hepatologist. That’s so strange? Anyhow, want to let you (and others on the forum) that the Hepatitis B Foundation maintains an excellent U.S. and International Hep B Physician Directory on their website. You can type in your city and state, and find liver specialists in your area. Hopefully you can find one near you!!

In the meantime, continue doing whatever it is that you’re doing since you sound like your in good health. And thank you for reaching out all of us. It feels wonderful to finally “come out of the closet” with having hep b. I didn’t publicly share my story until 3 years ago, and I’m 62 years old!! So you can imagine, it felt like a huge burden off of my shoulders. And of course now I wonder why I waited so long?!!! Always, Joan

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Thanks, @Joan_Block, for responding. I can’t imagine all the lives you have helped. I really appreciate the Hep B foundation. I have used the info there often. I did find some providers in my state but I am still trying to decide on what to do. I am thinking of trying another provider in the same practice who has good reviews and she lists hepatitis as her area of interest but she doesn’t do fibroscans. If I switch to her, the earliest opening is in August or I can keep my current hepatologist and be seen next week. But he doesn’t see many patients, I don’t think he really hears me, and I didn’t realize til recently that hepatitis isn’t his thing. All his research is on fatty livers which I also have. I think I may need to start treatment soon so I don’t know if I should delay it til I can see new dr but I don6t know if I trust my current hepatologist. He told me tenofovir causes renal impairment. Is this true for both Taf and tdf? I may not be as healthy as I have been as my dna level and TG and VLDL have increased (last 2 likely due to poor eating habits). My PCP has been slow to start statins on me as she doesn’t want to worsen my liver so I have had moderately elevated cholesterol for several years now. I appreciate reading your comments and others on their experience with the meds. It has helped me be less anxious to start treatment. Kim

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In Germany, data protection (including of health information) is taken incredibly seriously, so the doctors needed my permission to tell my employer. They already knew anyway because I was going to work in a Hepatitis B lab (probably the safest lab for me to work in because there’s already so much virus around!) and I was already open with my boss about it. I didn’t see any local laws at all that would have stopped me from applying.

Indeed, it’s really disappointing that we still have to live in a world where this discrimination happens. I’m sorry about how you have been treated and hope that by banding together we can make a difference!

Thomas

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Hi @hope4us,

There’s a thread that goes into greater detail about the potential (very rare) side-effects of long term antiviral therapy here: Possible side-effects from long-term antiviral therapy. Basically, renal impairment is very rare with TDF and pretty much not reported at all with TAF. People can be switched over to ETV if they do have some existing renal issues and they want to be on the safe side.

I don’t think you necessarily need a hepatologist that specialises in viral hepatitis (as much of the monitoring can be done by GPs as well), but I think you need to feel like you’re being listened to and your concerns addressed. It doesn’t sound like this is the case at the moment. I suppose if you can seek a second opinion that might be a good option. I don’t know the system where you are, but I would have thought you can be referred to another centre that does fibroscans; the hepatologist themselves don’t necessarily have to do it. Usually, a sonographer would do both my ultrasounds and fibroscan.

Re: statins, I wouldn’t have thought that there was anything wrong with having hep B and being on statins. I think there have been some large trials that show statins even having a slightly positive effect in preventing liver disease progression.

Hope this helps,
Thomas

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Hi Ajaxplus,
Please don’t be disheartened. I’ve only started researching the requirements regarding your work visa application and why anyone would need to disclose such confidential med info plus you were a child at the time of diagnosis. However, as Thomas confirmed, and I being NZ born have studied & employed in Germany including with Immigration.
Medical requirements depend on the type of employment such as ‘food specialists, medical staff’ lung ex-rays are required otherwise no more than that for all other vocations, frankly when I think about the thousands of involuntary migrants in EU who have managed to arrive with just the clothes on their backs not even any form of ID Have you reviewed positions in other EU countries? It is highly recommended of EU millenniums to have had at least one year of employment abroad and visa versa was also a tertiary educator and yes there are other opportunities.

Hello my name is Brittney I’m 27 in the US Newl diagnosis had no idea found out through pregnancy testing. I’m hoping someone can help me figure out what my lab results mean while I’m waiting for more testing. I can’t figure out how to make a new post. Thanks in advance.

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Hi my name is makhan, I’m 35 years old,so happy to part of this community. I got to know my hepatitis b status since 2018 through traveling process, I was so heart broken but more heart broken when I tested my daughter and she was positive too, I blame myself, blame my country it’s just painful up to now for me, I’m still ashamed to talk about it outside of my family, scared to get in a relationship, don’t want to effects anyone and afraid to tell someone that comes around me, don’t know how they’ll reacts. I’m glad to be able to talk with people of my kind here and praying everyday for the cure :pray:t2:

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Dear @Brittneybc01, welcome to the community. I’ve transferred your post to the lab results thread and hopefully we can put your mind at ease.

Dear @Makhan_Komala, thank you so much for sharing your story with us. I’m sorry to hear about the hardship you’re going through, but know that you’re not alone. There are many people with Hep B living full, productive lives.

Regarding the shame and guilt, I completely understand. I think my mother felt the same thing when I found out I had Hep B, but I never once thought that she needed to feel bad. There was nothing else she could do, she did the best she could under the circumstances. I hope you can accept this too. There are other threads talking about living with hep B here: How have you dealt with discrimination because of your HBV status?, Dealing with the diagnosis in a relationship, and Must I disclose my status to housemates?.

I hope these help,
Thomas

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Thanks a lot
I’m so happy to be here

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Dear Makhan, please don’t blame yourself for transmitting hep b to your daughter. You didn’t know that you had this virus inside you when you gave birth. It’s not your fault! And yes, it would be ideal if your doctor had tested you before you gave birth so your daughter could have received the first dose of the hep b vaccine to prevent infection. But as Thomas shared, he never blamed his mother for his infection. So hopefully you can take some comfort from that.

And as far as dating, please know that blood is a two-way street. You may be worried about your hep b diagnosis, but you never know what a future potential partner may have in their medical history. And the good news is that there is a good vaccine to prevent hep b! So anyone you’re seriously interested in can be easily vaccinated and protected. Remember, you’re a valuable woman who deserves love and hep b shouldn’t be a barrier for the right person. There are more people who will accept your condition than you might expect. If they don’t, then those people don’t deserve your respect or love!! Always, Joan

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