Hi, I am new here, too, and I also cannot figure out how to post so I will follow your example and reply as well. I am Kim from New York. I have had an odd start to my journey and I am relieved to find this forum so that I may learn, share and offer support. I had a talk with my Primary Care Physician yesterday and it has opened a very large door for me. I was recently discussing a difficult skin condition with her and she expressed frustration that I sometimes fail to follow up with Doctors. I pointed out to her that they are all rude and dismissive to me and always tell me they cannot help me and that I need to see a psychiatrist. I explained that I had no idea why doctors who had only seen for me for five minutes would consistently say this to me, so I just stopped going to doctors. I told her I was only seeing her because I was desperate to get some help with this skin condition. She said she wanted to follow up on something and had me come in to take blood. When I met with her for the results yesterday she pointed out that she had run a Heb B panel and told me I was positive for Hep B. She said this was a core antigen positive and explained that meant that I had been exposed to the virus. I told her that I had had a similar conversation with another doctor 30 years ago after I had asked about the vaccine and had not heard a word about it since. As I ruminated over our conversation later that day I realized she was trying to offer me a reason as to why the doctors are are so rude to me. I realized they just automatically assume that I have been a substance abuser and will ask them for opioids. This is not the case, but I doubt anyone will ever get that far in a conversation with me. I went home after that last appointment and started educating myself as much as I could reasonably expect to do so on the internet. I found The Hepatitis Foundation in Philly and a link to this group. The Foundation also had a list of good hepatologists in my area so I have arranged to have an appointment. I feel this is a good start. Thank you all for being here for me! I have so much to ask! For one, I had no idea I should have been monitoring my liver for these last thirty years…… it seems there is a lot I have been unaware of. Thirty years ago the doctor did tell me I cannot donate blood, but that is about it. I had no idea I needed to be talking to partners about this! Fortunately I have utilized safe sex practices over the years (apparently I was protecting them more than myself) and so my partners were safe in my ignorance. I have a suspicion as to how and when I was exposed to the virus, it would have been about 35 years ago and involved a domestic parter who was not honest with me about a lot of his activities. Regardless, now I have to learn how to navigate the medical community and the stigmas surrounding this status. I am stunned to find myself in a small group of shunned people with infectious diseases… I never knew this was such a big deal. I am dizzy from reading all of the bloodwork up details I will have to follow…I have lots to learn and many questions and I am grateful to have all of you to support me. I am sorry that you are all in this select group with me, but we have each other and that counts for something.
Hi @Elkile,
I am really glad that you found The Hep B Foundation and that lead you to this community. Many here have dealt with some form or another of stigma due to this disease. It’s funny how you can go to the doctor for one thing and then find out you have something else. I feel bad that you had so many frustrating experiences over the years with multiple doctors. I think the medical community is much more informed today than previous decades about Hep B and know that more times than not, patients are infected from birth or other reasons than just intravenous drug use. It was a blessing in disguise though that you went to get checked for other reasons and received this diagnosis because it’s better that you know and you can monitor the condition and get treatment if necessary.
Take a look around the forums. There is a lot of information to glean and if you have questions, our experts will do their best to answer them. You can lean on this community because we all are in the same boat and can understand with empathy. Keep us updated and let us know how things are going when you have updates. Again, welcome to the community!
-Paul
Hi Elkile
Thanks for your long thread that gives the reader a deep understanding of who you are, your experience with medical professionals, your help b condition and your statue in public relation. Am wondering if this is a general experience for people with hepb infection in your area or unique to you.
Welcome to hepb community, read alot and evaluate you personal interaction with your doctor for optimal treatment plan.
Kinoti
Dear @Elkile,
I’d like to join my colleagues in welcoming you to the forum and thank you for sharing your story.
We know that stigma and discrimination across the medical profession is letting a lot of people down and stopping people from accessing appropriate care. There are indeed committed heroes that are in the health care system, but some sectors have a lot to improve. I’m glad that you were able to find a way forward and have an appointment with a specialist.
I hope you find this community useful and please keep us up to date on your progress!
Thomas
Hello Everyone!
I hope you are all doing well.
I am Pradeep Malik, a hepatitis B carrier and on an antiviral treatment since 2017. I am in North Carolina, US.
Thanks for letting me join this group. I am hoping to learn, share my experience and try my best to stay strong.
Cheers,
Pradeep Malik
Hi guys! I currently live in The Netherlands and a chronic Hep B carrier since childhood (now reaching my 40s). I’ve chosen to remain silent about my condition (apart from family and medical professionals) because of the perceived stigma. Last month I have started treatment with entecavir (after years of reluctance to leave it alone). Is anyone using the same drug? This forum is a really great idea. Greetings
Hi @Titobissau ,
Welcome to the community! You will read on here that many and maybe most people deal with the stigma of Hep B. There are at least a few threads on the forum about it and some advice and stories from other members that have or do deal with it.
The 3 main antiviral treatment medications are Entecavir, TDF and TAF (Tenofovir); in that order of oldest to newest release. That would be an interesting question, what percentage of the CHB population uses each and how has that statistic trended from year to year.
As you read more of the posts and threads within this community, you will quickly learn that Thomas Tu is the founder of this great community and you will also learn about the other experts that dedicate their time and effort towards this cause.
Welcome again,
-Paul
Hi Titobissau
Welcome to hepb community where like minded people live for one another.
Your feelings are not unique to you but to almost every body after discovering their hepb condition. With time and sharing all bad feelings fade and we become resistant to stigma and we become educators.
Kinoti
I am so sorry that you lost your parents. How old were they. Pls don’t feel obligated to respond. Did they know about their HBV status?
Hi all. I found this forum a while ago but I just dared to actually join. I am originally from Mexico but I have been living in Europe and the UK since 2015.
I was diagnosed with Hep B in February after having elevated ALT (700). I started feeling unwell in around November 2022 but because I thought I had been vaccinated as a child, the doctors tested for other things and my diagnosis actually took months!
I tested for Hep A, B, C and E in December 2022 but somehow the NHS doctors lost my results for Hep B so I had to retest in late January.
In my confirmatory tests in February I had a virus load of 92340 iu/mL. I was originally told this was a chronic case by my GP which led me to feel very anxious and depressed. She was very definite with her answer and basically told me that I was chronic and that was it.
After I spoke with 3 liver specialists (2 private from Mexico because I didn’t want to wait months for the NHS) and they all told me that it was very likely an accute infection. Discussing my medical history, they said that I had been infected via unprotected sex most likely. They also mentioned that I had a good possibility of clearing the infection because the results showed a decline in ALT (I went from 700, to 90, to 50) between early Dec 2022 and February 2023.
I was told I needed to retest in May/June and I just received some test results from last week. I still have a viral load of 9000 iu/mL. My ALT is 31 now. To be honest, I thought by now I wouldn’t have any viral load at all…
I am waiting for the rest of the test results and from a letter from the consultant but I am finding it really difficult to be patient with these results.
I am hoping that my body has been able to clear the infection, but all the waiting and not knowing I think is affecting my mental health a lot.
Thank you all who participate in this forum. It has been really helpful to read you all, even in the background.
-A
Hi Ale92,
Welcome to the platform. Thanks for sharing more about yourself with us. Based on what you shared, it seems its still too early to determine whether your infection is chronic or acute. Its been 3 months since your last test and you need another test at the 6 month mark or so. Which you mentioned you have done recently. I understand you are worried, but be rest assured that about 90% of adults who are exposed to the virus clears it. And from your numbers going down seem to be heading in that direction. Your new test results will really tell us more. It is easy for me to say, but try to breathe to release the tension and anxiety of not knowing what your results are. Take in deep breathes and try not to over stress yourself. It is not easy I understand, but try doing something you like ( a walk, biking, swimming etc) to help take your mind off things for a few hours or a day. Let us know when you get your new results and our experts might be able to offer a more complete insight on it.
Thanks, Bansah1
Thanks @Bansah1. I am waiting for the results. Hopefully I can share good news with you all next week. -A
Dear @ale92,
Welcome to the forum and thank you for sharing your story. I am glad you chose to join the conversation and I’m so sorry about what you have been through.
If you had originally been diagnosed in Jan 2023 and are still positive, then it is likely that this is a chronic infection. However, it is good that you are able to now know about it (it is not common, only 10% of people with Hep B know it) and therefore do something about it. It is a condition that can be managed and many of us live relatively normal lives.
Please keep us up to date with your journey as you go along and hope you find the support you need on this forum.
Cheers,
Thomas
Thanks for the warm welcome @ThomasTu . This whole diagnosis has been the worst emotional rollercoaster because of the conflicting information I have received from healthcare professionals, the waiting times plus what I’ve been reading online about the disease.
I received further details of my results and I’m very confused. The nurse from the NHS recommended another round of testing in 3 months but I spoke with a specialist and they told me that at this point it is very likely that I will continue to test positive. Can someone please have a look at the results and give more information about the B e antigen and B e antibody? I feel so frustrated that only 5-10% of adults develop CHB and yet my body couldn’t find the infection… I don’t want to feel like I still need to wait 3 more months just to be disappointed again.
These are the results of the markers (at least looks like my liver is ok)
Hepatitis B markers
Microbiology: Hepatitis B surface antigen POSITIVE
Hepatitis B core antibody POSITIVE
Hepatitis B core IgM Not detected
Hepatitis Be antigen POSITIVE
Hepatitis Be antibody POSITIVE
Hepatitis B viral load:
9020 IU/mL
LiverFunction tests
Total Bilirubin 8
Alkaline Phosphatase 79
Alanine Transaminase 33
Thanks to all who participate in this community 
Hi fawole pls which city are you in Nigeria am in kwara state and finding it hard to locate a hepatologist.thanks
Hello Ridollah,my name is olamide am from Nigeria as well pls can n you share the what’s up group number so as to join many thanks
Hello @Dell , I stay in Ibadan, you can check UCH in Ibadan or the Unilorin teaching hospital
Welcome @ale92
I can’t answer your questions and I’m sorry you are in limbo.
I’ve been CHB for approximately 40 years.
Physically hasn’t stopped me from doing anything. Married with 3 children.
One of the health experts will get back to you.
Yes, it sucks that we are the 10%. But we now have treatment to stop/slow down liver cancer. And the treatment isn’t harsh like some other treatments eg;chemotherapy.
@ThomasTu @availlant @Joan_Block @john.tavis ??
Dear @ale92,
Unfortunately, your test results indicate that your HBV infection meets the definition for chronic infection: IgM antibodies for the hepatitis core antigen are the marker for acute infection and these are no longer present.
Your HBV DNA has declined (but still present at a significant level) and your liver infection (ALT) has also improved (also signs of the transition from acute to chronic infection). This is because your body has been able to partially control the infection to a level where the inflammation in your liver has mostly disappeared.
You should continue to be monitored every 3-6 months to see how your infection is doing and you may wish to discuss treatment options with your doctor.
It is very important to take heed of @Caraline’s excellent comments. CHB is NOT a death sentence and you can lead a full, productive and happy life. Please do not despair!
Good luck!