Welcome to our community, Johnny! Thanks for sharing your experiences with us and hope you find support from this forum (for both good days and bad).
P.S. Hope it’s OK I moved the responses to a new thread to specifically discuss starting treatment (which is an important topic that I thought should be easily found by others).
I’m really sorry I missed this post earlier, Nancy. I hope this community can support you through this time, as many of us have been in the same situation.
Hi all-
My name is Su Wang. I’m so glad to see this forum.
I am living with hepatitis B and also practicing as an internal medicine physician in New Jersey, USA. I take care of a lot of HBV patients. I am also currently president of the World Hepatitis Alliance, a global NGO led by patients and dedicated to viral hepatitis elimination. #NOhep
Some background on me- I found out I had hepatitis B when I donated blood in college. I thought I got it from my mother through perinatal transmission (mother to child during childbirth) which is very common. My sister does not have it though.
However, it wasn’t until recently that we looked at my mothers test results and it turns out she does not have hepatitis B (her Hepatitis B Surface antigen is negative) and has never actually been infected (her HBcore Ab test is negative). My uncle who is a pathologist recently informed me that my grandparents who lived in Taiwan found out they had hepatitis B sometime when they were older. My grandfather was a dentist and my grandmother was a midwife and back when they practiced, healthcare was not following universal precautions (gloving etc) so they may have gotten it from their work.
I have worked as a primary care physician taking care of the Asian community in NYC & New Jersey area for more than 15 years and do a lot of work in the hepatitis B arena clinically and advocacy.
I believe strongly that peer groups like this are so important. As people w lived experience ,we can help support each other in ways our physicians cannot. It’s so important for us to be a part of a community, so we see we are not alone. We can learn so much from each other’s expertise and experiences. I can say without a doubt that I have been inspired and emboldened by others living w hepatitis B who have share the own stories. So just know, you may be doing the same for others!
A post was split to a new topic: Having children and Hepatitis B
Hi!
Good to have found this group in light of everything that I’ve been through these past couple of weeks. @ThomasTu, I’ve come across a couple of your articles and am pleased to see your contributions here. I just found out a couple weeks ago that I too am infected with CHB. Shocking part is - this diagnosis was first seen by an IVF doc here in the US who failed to bring it up whatsoever. And I serendipitously came across that result 2 years later and took initiative to get re-tested only to confirm the Dx.
Long story short, no lung damage as per ultrasound, just “probable mild steatosis”. I’m e-antigen negative and my DNA levels are 2020 IU/mL. ALT, AST, Protime, INR are all normal. Cholesterol is 174 with HDL @ 72, LDL @ 90, and Triglycerides @ 60. TSH and Iron are normal too. And so is my weight, 140 lbs at 5’7.5". I see a hepatologist next week who will also perform FibroScan.
I have no idea where I got infected but since I grew up in East Africa up until the age of 15, all HCPs I have talked to thus far suspect I’ve had it since a child especially since it’s highly prevalent in that part of the world. The worst that worries me is the stigma. I’m a 37 YO, single female, of South Asian origin that some day still wants to have a family. I even banked some eggs 2 years ago and now wonder if those are affected by it?! Plus the anxiety associated with telling a potential partner about it. I have had a great support of friends, family, and a therapist that are helping me through this tough time but I can only wonder and worry about opening up to a future partner about it and the possible rejection due to the Dx. Even the thought of it brings me to tears 
What I’ve also struggled with so far is lack of information on how this is going to change my day-to-day. One HCP I talked to said “don’t share scissors” and I thought to myself, “so does that mean I can’t get a haircut?!”. I mean, wth?! I keep hearing conflicting things (HCPs that failed to mention anything about it, to those that say don’t share scissors). Do people just don’t know enough about this in the US or am I just running into crummy HCP’s?
Sad, Mad, and Still looking for information…
Hi Marigold, welcome to the forum. Hopefully you’ll find some answers and much needed support! For everyone who is first diagnosed with HBV it comes as a huge shock. Most of us didn’t even know what hepatitis B is or what it means. The fact that your IVF doc didn’t tell you about the positive HBV test isn’t surprising. A lot of docs don’t really understand the HBV blood test results! Sometimes they think people are infected when they’re not, and vice versa. I’m quite impressed that you knew to post all of your lab results. Are you a doctor or healthcare professional? To my eye as a trained nurse, your blood tests look pretty good. Not sure whether you have what’s called e-antigen negative chronic hep B (aka precore mutant) since your viral levels are pretty low and your AST/ALT are within normal limits? Hopefully some other knowledgeable scientists/docs on the forum will weigh in. But since you’re going to see a hepatologist next week, you can ask him or her to clearly explain what kind of chronic HBV and what your lab tests mean. You will also want to find out IF you’re eligible for treatment and if so, whether it’s a good idea since you still want to get pregnant in the near future? You will also want to know if anyone else in your family has tested positive for HBV and/or has had liver disease such as cirrhosis or liver cancer? One other practical tip is to be sure to ask for copies of your blood test results and the fibroscan as well. It’s good to have documentation for your future reference.
As a nurse by training and having lived "knowingly"with chronic HBV for 32 years (I was diagnosed at 30 years and literally collapsed in the doctor’s office from the shock). So I definitely understand the different stages people go through when first diagnosed. The good news is that you have a strong support network of family, friends and a therapist. You’re way ahead of a lot of people who are first diagnosed. Dating with HBV is a tough topic, but I like to remind folks that we have a secret weapon in telling others - there’s an effective vaccine that can be taken. Not many other “STDs” have that to offer as an option. So once a relationship gets to the point that both folks have to share their “medical history,” there’s some relief to be able to tell your potential partner that there’s an effective vaccine, which confers more than 50% protection after the first dose, and combined with the use of condoms, there’s a lot of protection available until they can complete the 2 or 3-dose vaccine series.
Although technically I’m not a doctor or scientists, my educated guess about your banked eggs is that they’re going to be just fine. Chronic HBV is an infectious disease, not a genetic one. So when the lucky day happens and you have your eggs fertilized, the risk of HBV transmission will be at the time of delivery when there’s a huge gush of blood exchange between you and the newborn. Some infected pregnant women who have high viral loads (you would have to check with your hepatologist throughout the pregnancy) benefit from taking an antiviral drug (e.g. Tenofovir) in the last 3 months to reduce their viral load; thereby, reducing the risk of transmission at delivery. I have an entire response for women who are getting ready to deliver because you only have ONE chance to protect your newborn from getting an HBV infection, but I don’t want to overload you now. You may have already stopped reading?!
Finally, in terms of living your daily life with hep B, my very best advice is to use simple common sense. Hep B is transmitted through blood, unprotected sex, unsterile needles and drug paraphernalia, and from an infected mother to her newborn at delivery. So, you just want to follow good personal hygiene (cover cuts, dispose of menstrual pads and tampax appropriately, don’t share toothbrushes/razors, etc.), avoid drug use, and make sure your newborn receives the first dose of HBV vaccine and one dose HBIG immediately after delivery.
On a daily basis, you can share meals with others, cook for them, use the same bathrooms, and live as you normally would. There really are no special precautions or procedures you need to follow. Live your life with joy and love!! Just be mindful of your blood and follow safe sex practices until your partner is fully vaccinated.
Ok this is way too long and others may tell me to stop writing so much. But please feel free to ask any other specific questions. There are many others on this forum who can share what they’ve learned as well. Thanks for joining and listening. Hope to hear more from you!
Cheers, Joan
Dear Marigold,
Welcome to the forum and thanks for sharing your story. I’m sorry about your interactions with the health system. Knowledge of HBV is definitely quite variable among health care workers and communication is not necessarily open.
Re: poor/conflicting advice, many of us here at Hep B Community have gone through similar situations (Joan has detailed her own first-hand experiences and has a lot of second-hand ones too in her role at HBF), so I hope you feel that you can call on the community to help you through it. Indeed, it’s part of the reason why I started this community up. Re: worries about stigma, we even have a thread about this here.
From your test results, you’re probably right on the cusp of eligibility for treatment according to guidelines, so that is something you might want to raise with your hepatologist.
Regarding the banked eggs, they will be fine in terms of HBV. As Joan correctly mentioned, the main risk would be transmitting HBV to the child during birth. There’s another thread here about what measures you can take to prevent that.
Hope this helps,
Thomas
Hello all. Hep B, liver cancer survivor. Was on Truvada, but now on Vemlidy as of a couple years ago. Morose at birth. Woot!
Hi Jan,
Hope you don’t mind I moved your post to the introduction thread.
Great to have you here and real congratulations on surviving liver cancer. I hope you can share your experiences and help others here.
Looking forward to getting to know you!
Thomas
Hi Thomas. The EM that you just sent to me (below) was meant for “Jan”? I do have Hep B, but fortunately I’ve never had cancer. Thank you for all of your hard work.
Sincerely,
Sean
Hi Jan, I responded somewhere else. Just getting used to navigating this forum. I love that Thomas Tu is reorganizing posts for greater visibility and clarity; I just sometimes get a little lost. Anyhow, I want to echo the response from Thomas as well. I’m interested in hearing more about your story, how you’re doing today, and what the heck does “woot” mean?? Lol … Joan
Hello every one,
Hope all are well and safe,
I am Tr.rao from Pakistan and facing HBV from 2005, this plateform is amazing for us to share our thoughts and experience.
So first of all bundle of thanks to Hep B community creaters
Hello everyone,
Hope you will be fine
I am tr rao and I have HBV carrier from long time, recently I performed
test as per doctor advise results are as under
HBV DNA (PCR) 6143 copies (three year ago was 34 coppies)
CBC. Normal
LFT. Ast 64. ALT 61
RFT. Urea. 25 cretanine 1.0
USG. Normal
HBeAg. Non reactive
Anti-HBe. Non reactive
Hi Traggarh, welcome to the Hep B Community! So glad to have you join the global conversation. And yes, it is wonderful to have a place to share our thoughts, concerns and questions with others who are living with chronic hep B. Having been diagnosed more than 30 years, I fee like an “old timer.” In regards to your blood test results above, is your doctor suggesting that you start treatment for your chronic hep b? It appears that compared to the U.S. treatment guidelines, your ALT is 2x normal, therefore, you could be eligible for treatment. Not sure how old you are or whether you have a family history of liver disease or liver cancer? If you could share your question or your situation that would be very helpful. Thanks again and look forward to hearing more from you. Always, Joan
Hi Joan_block,
I am 36 years old and no liver disease family history, now my doctor ask me to start enticavir.5mg ,
But he also ask me that treatment will be minimum of 2 years, that was scaring for me,
Is any side effects??
Entcavir best option?
Please guide me further if any one have any idea
Thanks for your cooperation and auport
Hi Traggarh, so first let me say that I am not a physician, so I can’t give you medical advice. I can say, however, that you might be eligible for treatment since your ALT (liver enzyme) is twice the normal amount. I’m not sure how to translate your viral DNA from copies to IU, so hopefully someone else on this forum can figure it out. But I’m assuming your doctor feels that your viral load is probably high enough to make him or her think treatment would be helpful.
In regards, to Entecavir, I’ve heard there are almost no side effects. The only thing with this drug is that you can’t eat before or after taking the drug for a certain amount. I can’t remember the exact amount of time, but there are some eating restrictions related to entecavir that can be a problem for some folks. Another drug that you can ask your doctor about is tenofovir disoproxil (or Viread), which does not have any restrictions as to when you take it. I was on this medication for the past 8 years without any side effects. The only reason I switched is because I developed osteoporosis at 60 years, and so the liver specialist wanted me to start another drug to stop the progression of the osteoporosis. But you’re a young man, so this should not be a problem. The only other thing is that your doctor has to make sure that you have normal kidney function since tenofovir (Viread) can sometimes cause kidney issues in those who may be prone to kidney disease.
With that said, either drug is equally effective in reducing your viral load and keeping your liver inflammation at a minimum. They both slow down the hepatitis B virus infection, which is a good thing for your liver.
I hope this helps a bit. Please feel free to ask more questions, and hopefully some others might jump in with their treatment experience. Thanks again for sharing your thoughts. Always, Joan
In your search for a hepatologist, be sure to look for one that focuses Hep B as an area of expertise.
Many are only familiar with Hep C or other areas of the liver. They aren’t always familiar with Hep B.
Hey Joan, Good to see you here!! How are you doing??!!
In all good, just received my second Moderna shot, so very happy to have survived the year!
It’s the best thing about being over 65yo!!
Welcome to Hep B Community, BJung! I agree with you and would add that it’s also important to get a GP who understands Hep B (as you’re probably going to be seeing them more often for day-to-day things). I know that this can be even harder than a hepatologist who knows their Hep B, but worth looking out for.
Cheers,
Thomas
I am a college student and I am 22 years old.
I discovered that I had Hepatitis B when I was 16. I got a full scholarship to go to a really competitive high school. It was all I ever dreamed of and I was so excited for the future. Since we had to live in dorms, they asked us to get tested for a bunch of things and one of them was Hepatitis B.
I was so surprised when I found out I was positive (I was a shy & super religious kid. I remember having not even the slightest worry about whether any of my tests will come back positive. I was young and dumb at the time and things like hepatitis are things that only happen to evil & sexually deviant people. 
)
I went to a few doctors and they all agreed that I have chronic Hepatitis B. This was a month or two before I was supposed to start my new high school. Up until then, I had so much hope for my future. Discovering I had Hepatitis B was…traumatic for me. I wasn’t allow to grieve it at the time because I didn’t really have the support network that would allow me to do that. My family invalidated my feelings by saying things like “Oh well, you’re healthy. You have nothing to worry about.” or “You only have a bit of the virus in you” or “We will all die from something”. I was too young to do anything about it. I thought I could just ignore it and go back to what life was like before I found out I had it. Especially then, when one of my biggest journeys was about to being. I guess I thought I just had to be strong?
I didn’t know much about the progression of the illness, but I knew that my risks of it getting really bad would increase as I age. Knowing that, I had barely any optimism for my future. I’m from a poor family from an even poorer country. When you grow up in circumstances like those, you are all you have. Your health and body is all you have. It’s fd up.
Knowing that my body might let me down one day made me develop a weird sense of pressure - like I had to work extra hard to provide a safe future for myself for when I do get sick… Obviously that mindset didn’t work. The pressure just broke me, I became severely depressed and burnt out and was failing all my high school classes.
I confided in a few friends about my Hep B and soon enough everybody in my school knew I had it. I’ve heard a story about one person having a crush on me and the other person being like "Stay away from her. She has Hepatitis B ) Those rumors have followed me into college. People at my current college even started talking about how I have Hepatitis B and HIV. I don’t know where the HIV part came from but I am assuming it’s because they’re both illnesses that start with H ??? I don’t even know.
I stopped being the person I was my whole life and I was never able to rediscover myself. I was failing high school and didn’t go to college for a year. Then, I somehow got a scholarship to go to college in the US. I genuinely don’t know how since my grades were so bad, but I am guessing a big part of it was that my high school just had such a good reputation.
I’ve spent college just barely keeping my head above the water, living day to day. I lost all my passion for life. I found out I had Hep B when I was 16 and I am 22 now. I am still lost. I can’t trust people. I feel betrayed by my family. I feel betrayed by my current college (staff and students).
I haven’t monitored my Hepatitis B since I was 16. I am afraid of what I might find because I know there’s nothing I can currently do about it even if I do. Especially in the US, where healthcare is so expensive. Although I have insurance through my scholarship, I still can’t afford a bill that’s even a few hundreds. I am just so afraid and I have no support.
The good news is that one of my friends has a parent who works in the medical field. They were able to get me some blood work for free. They checked my bilirubin, AST, ALT, Alkaline Phosphate and Globulin. Everything was normal except that I had low AST (But I’ve researched it and seems like only high AST has clinical significance)
They also did my CBC and that looked good as well. Had slightly raised Lymphocytes (48.2%) but I was recovering from a cold when they took my blood.
I feel so alone and I just don’t trust anyone enough to talk to them in real life. I’ve talked to counselors and I am on a medication that helps with my depression. My issue is that I am genuinely lacking the support I need.
Sorry for the long post. I just had to get his off my chest. Hope everyone on here is doing okay. Sending love to everyone. <3