Thanks, Kinoti, Joan, Dr. Thomas & Community group Members.
Sorry for the late reply as I am trying to get familiar with the community group.
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I too was diagnosed after giving blood. I see a gastroenterologist in my area the end of this month and am anxious to learn more about my numbers, viral load, health of my liver. I am also looking at every physical ailment and wondering if it is from the hep B. I am currently suffering from a blind spot in my vision, just off the center, making reading fine print difficult. I’m hoping it’s just a floater but with hep B, who knows?
I’m 63. I worked in dental hygiene from 1979 to around 2005. I had two sharps injuries during that time. But, also, keep in mind that prior to HIV in the early 80s we did not wear gloves! Hard to believe now, but, yeah, naked fingers in bloody mouths all day long. I don’t know how prevalent hep B was from the late 70s to early 80s but thinking it possible I could have been exposed then. I’m hoping my numbers might indicate how long I’ve had it.
I was also wondering when blood donation organizations began testing for hep B and then when they began informing donators of their findings? I gave blood for many years without issue prior to 2005. Around that time I did receive a letter after a donation saying my blood was unacceptable but did not state why. I got busy with life and didn’t ever attempt to give again until the recent donation. Now I’m wondering if the 2005 letter was regarding a hep B positivity.
So many questions constantly floating around in my mind…
I’m new to this forum and am learning so very much. I’m so impressed with the knowledge of the frequent contributors.
Thank you in advance for welcoming me.
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63 years old, chronic hepatitis b, and guessing not on treatment…. I consider that a huge win against the virus.
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Hi Kim, so we’re the same age and former health care professionals! I turn 63 this coming February and was a nurse for years. Although I had needle sticks during my career, I actually was probably infected at birth since I was born in Korea and adopted at 4 years old. With that said, your blood tests won’t indicate how long you have been infected or even how you were infected. You will just know the current status of your liver’s overall health and response to the hep b virus. In answer to your question, the U.S. started testing the blood supply for hep b in the 1970’s but it became common practice in the 1980’s to test for the hep b core antibody (anti-HBc or HBcAb) as a marker for possible infection. In 2005 you may have been told that you tested positive for anti-HBc, which meant your blood was unacceptable even though you might have been exposed but fully recovered. In your case, though, it was because you actually had chronic hep b. I’m not sure when they switched to testing for the actual hep b surface antigen (HBsAg), but currently, blood banks can at least tell people whether they’re infected rather than just that they might have been exposed and recovered. So glad that you found the forum and are benefiting from the collective knowledge and insights of all of us who actively participate. Hopefully you’ve found a good doctor who is knowledgeable about the management of hep b and are keeping yourself from Covid. Ugh! Can’t believe the omicron variant is closing us all down again. Anyhow, to all of us – may the new year bring better news and more freedom!! Always, Joan
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Hello all,
2 days before Christmas, I received a diagnosis of chronic hepatitis B. I have been diagnosed with this disease. I live in Germany and since a few weeks the test is part of the routine checkup for people older than 35 years. My local doctor called me and said, “I’m very sorry, but you have chronic hepatitis B”. I was like “OK, what is it.” The doctor explained the facts and I asked a few questions, like “how long have I had it… and how does the transmission work?”. My doctor told me that my wife and son should have a blood test, and the doctor made an appointment for me at University Medical Center. At that point I thought, ok, this series, but I didn’t understand why the doctor was being so dramatic. After the call I researched on the internet and a few minutes later I realized this was really bad. The following week was the worst time in my life. I didn’t know if my 1.5 year old son was infected by me or my wife. I had panic attacks, couldn’t sleep or eat. 2 days ago my son’s doctor called and told me that my son did not get infected and has full protection because of the vaccination. I was so happy that I forgot about myself for some time.Then we got the results from my wife’s Tets. She is HBsAg negative, but there was a mistake and they did not test anti-HBc.
So now we don’t know about her protection, which means more hours and days of uncertainty because the doctor is on vacation.
The first 2 days I felt like I was radioactive. I was afraid to touch things in my house. Like many others, I have no idea where I got the Hepattis B from. I have told some friends about my infection and now I don’t know if they will ever visit me again. So many thoughts run through my head. Is there anything I could do to prevent this from happening? How much time do I have? There are feelings of fear, anger, sadness.
I am not able to work right now. I have to be careful not to fall into depression. I am glad I found this site. Somehow there are a lot of local support groups for Hepatitis C and HIV, but none for B.
With kind regards
Alexander
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Dear @KimS,
Thank you for sharing your story with us and joining the community. Welcome to the forums and glad that you are finding the information posted here so useful.
I’m not aware of any reports linking hep B and eye problems. It is likely caused by something independent of your hepatitis B infection. Please feel free to ask any further questions.
Dear @Alexander,
Welcome to you also and thank you for posting your experiences. I’m sure it helps many other people out there who have felt the same things when they were diagnosed. I’m sorry you have had such a hard time of it and I’m sure you are still coming to grips with your results.
That’s great that she is HBsAg-negative. The test for anti-HBc is a measure of whether she has been exposed to the virus, protection is measured by anti-HBs (see the explainer thread here: EXPLAINER: Lab results and their interpretation.
To perhaps set your mind at ease, the majority of people with hep B live normal lives and don’t necessarily feel any symptoms. I myself haven’t felt an ill effects, but basically monitor my condition twice a year with a meeting with my gastroenterologist and see it as something like going to the dentist for a check-up. As long as you can stay one step ahead of the virus in this way, you can live a long fruitful life.
I hope you will use this site for support and let the community know about what you’re going through.
Hope this helps,
Thomas
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Thank you for responding, Joan. You kind words and knowledge about hep B helped me so much.
I got a call from my PCP yesterday. He had done bloodwork for hep B and the results were all negative! I’m greatly relieved, of course, but am confused too. How did The Blood Connection get it wrong? Is it possible my doc’s results aren’t reliable?
Here’s the results of the most recent tests:
HBsAg: Negative
Hep B Surface Ab, Qual: Nonreactive: Inconsistent with immunity <10 mIU/mL
Reactive: Consistent with immunity >9.9 mIU/mL
Hep B Core Ab, Tot: Negative
HCV Ab: <0.1
I plan to contact The Blood Connection and see if I can get the results they have from my blood donation.
I’ve spent the last 6 weeks in fear because The Blood Connection letter seemed so certain–said the confirmatory test was positive too. How often do they get it so wrong? Now I just don’t know what to think.
Thank you in advance,
kimshumate@hotmail.com
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Hi Kim, wow how could such a mistake be made by the blood bank? But unfortunately it can happen anywhere. I’m really glad to hear that you’re hep b negative. Maybe you were vaccinated and just don’t remember? Anyhow, glad that you’re PCP is on top everything. Just wish you hadn’t had to go through the confusion and all the feelings you must have had about having your blood rejected because of hep b. My only final recommendation is to ask your PCP to test you again in about 6 months to just double-check and ensure that you’re completely free. But I understand if you don’t want to go through more blood tests, though. I tend to be more cautious and would just want one more confirmation. Anyhow, happy new year!!! What good news to start 2022 with. Always, Joan
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Hi Alexander, I’m glad that you found this forum. What a terrible time to receive a call from your doctor about a liver infection that you know nothing of. First, please know that as Thomas already wrote, hepatitis B is NOT a death sentence. Today there are now many approved drugs that control the virus and can halt or certainly significantly slow down any disease progression. Just like folks with high blood pressure can take drugs to decrease the risks of stroke or heart attacks. For hep b the current antivirals greatly reduce the risk to more serious liver diseases. Combined with regular monitoring (e.g. medical check-ups with blood work and imaging studies like ultrasounds), the outlook for those of us living with chronic hep b is much brighter than what you read about online. Yes, chronic hep b is a serious liver infection. BUT, it doesn’t mean we can do things to reduce our risks - seeing a knowledgeable doctor who understands management of hep b and screening for liver cancer; stopping smoking; stopping or reducing the amount of alcohol drinking; eating more healthfully and exercising to stay in good shape; and of course getting our loved ones vaccinated.
The good news is that your son was vaccinated, your wife tested negative for the virus, and you sound like you’re probably in good health overall as well since this diagnosis was such a shock. My personal recommendation is that you request copies of all of your blood tests, especially your hep b test results to make sure that you understand what was negative or positive. Also, since this is the first time that you were told that you had hep b, your doctor should re-test you in 6 months to make sure that you actually have a chronic hep b infection. Technically, a chronic infection is diagnosed after a person tests positive for the virus (HBsAG+) 6 months apart.
Ok, this response is getting to long. Sorry! Since it’s the New Year, I wanted to make sure that you started with a reassuring response to your posting and to start the new year with hope and a confident attitude. Hep b can be controlled, managed, and one can live quite successfully with it. Just as Thomas said, I as a 63 year old woman have been happily married for 35 years, have 2 grown healthy children, and other than the usual aches and pains, have not really been impacted in any dramatic way by my hep b infection. So I hope this gives you hope! And finally, I can reassure you that your friends and family will not reject you because of hep b. There’s an effective vaccine and it can’t be spread easily through casual contact. You can share hugs, meals, drinking glasses, bathrooms, etc. Hep b is most effectively transmitted through direct blood to blood contact that happens with sexual relations, drug use and shared drug paraphernalia. With that said, please keep us posted and know that there is an entire community of people who can support you and reassure you that you do not pose any danger to those around you!!! Love your family and wife. Always, Joan
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Dear Alexander,
I am sorry that you are going through this situation. As Thomas and Joan, explained very well about this disease. I second that We are lucky that we know our disease and it can be controlled if needed like a any regular disease BP or Sugar (single pill a day if needed)
I want to share my experiences if it helps.
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I am a Hep B carrier (since birth). I was first time diagnosed in 2010, I am glad that it has not impacted my wife and my son (born @2011)
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My ALT and AST levels were ok so I did not bother too much.
Mistakes: - 1) I did not do regular blood checks. At least 1-2 times a year.
2) I was an occasional party drinker. Weekend Beers was common like with young adults. -
2017- My ALT/AST levels were elevated, viral load was high. I had no symptoms which are expected with this disease. no symptoms.
Luckily, I relocated to the US for job reasons. Starting 2017, I did the following:
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Become more aware of the disease and accepted it. No need to worry. The problem is there are a lot of myths in the society.
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First thing my specialist told me was that I need to take a pill per day which is very safe and control is like any other regular disease let’s say Sugar or BP where one needs to take a daily pill that’s it.
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I stopped Alcohol in 2017. Since 2017, I am on my regular life. I am 40+ and enjoy my Biking. (15-30 miles), walk 10K Steps/per day), Badminton matches, investing and normal life with my wife & Son.
My antivirals are keeping my ALT/AST levels, Viral levels under control so no need to worry. I do blood checks every QTR or in 6 months.
In 2021, My wife (Health Worker) and I were diagnosed with Latent TB. I have to undergo 4 months of treatment. Maybe I will share details of Heb B + Latent TB in a separate thread.
and now recovering from COIVD lols…
So far, Hep B is not the end of the world for me, it’s also not the last disease that I got. We need to move on, get the right info about the disease, talk to specialists, and of course, this group is a value-added topping where we get to know them first-hand experience.
Good Luck!!
Pradeep
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Hi everyone,
My name is Charles from Nigeria. I was diagnosed with chronic HBV in 2011, and after series of examinations I was placed on medication from 2012 but presently on TDF 300mg daily. Last checked viral load was undetected in 2021. This journey has been very emotional, sometimes I get myself worried and over thinking about what will become of my situation, I developed the habit of reading, researching and asking lots of questions about HBV both online and offline. I am so glad to be a part of this community.
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Hi everyone,
Experts please, I got hold of my lab result few hours ago and I am particularly disturbed about the Alpha feto protein (11.4ng/ml). Other parameters are OK: ALT 21, AST 23.
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Hi @Chisomcharles198, thank you so much for your first lovely message about valuing the hepbcommunity.org forum. The goal is to create a community where people can be honest and receive the support and information they need to navigate living with hep b. In regards to your specific question about your elevated AFP level, the first question is what has it historically been? Is this a new increase or do you tend to be above 10? Second, it is important to get in touch with your doctor either way to find out if anything else needs to be done to evaluate your elevated AFP. Although it’s on the higher end of “normal,” it doesn’t necessarily mean anything terrible. On the other hand, if it’s a new increase then your doctor may want to check you again? Hopefully some of the medical doctors and/or Thomas can be more specifically helpful. But I wanted to respond so you don’t worry too much and to thank you again for being part of this community! Always, Joan
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I want to join @Joan_Block in welcoming you to the community and thank you for sharing your story. Sounds like you’ve got a great attitude to your condition: knowledge is power!
Regarding your results, of course it is best to discuss these results with your doctor about next steps (which may, for example, repeating the blood test and/or liver ultrasound). I would agree with Joan in that you should look at it in the context of your past results, not only this single result on its own. As mentioned in the lab results thread, sometimes results can fluctuate for different reasons. There are also many papers out there stating different levels of upper limit normal (I’ve seen different sources saying less than 8, less than 10 or less than 20). The big issue is if it gets in the 100s, which is a good indicator of liver cancer.
Hope this helps,
Thomas
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Thank you so much for creating this community
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Hello everyone:
I am new to this Hep B Community as of today (29-Jan-2022). Please feel free to view this video to learn more about my HIV and Hep B care journey:
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Log into YouTube
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Search for “San Francisco Hep B Free - Bay Area”
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View “Living With Hep - Episode 5: David Doan”
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Dear @dcdoan,
Welcome to the community and thank you for sharing your story with all of us. I’ve embedded it below:
We’ve linked to other SF Hep B free videos in the past as well: Videos about living with Hepatitis B
Also wanted to thank @RichardSo_HepBFree for the shout-out and linking to us in this interview.
Cheers,
Thomas
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Hi. I’m mid forties and have had hep B for over two decades. Ive been on treatment and undetectable DNA and normal liver enzymes for years. I had a platelet count come back low recently and I have had a bit of nausea lately. I’m heading in to see a hepatologist soon. Had been seeing a GI. I have so much fear and anxiety about what could be happening it has really been difficult to deal with. I really don’t know if something is major wrong or not. My platelets have been normal two more times since being low on two occasions 125k and 98k. I had a recent US that stated slightly heterogenous echo texture, which I hadn’t seen before on an imaging of my liver. Bleeding times, ammonia, bilirubin have all been normal. It’ll be a couple of weeks to see the liver expert, but in the meantime I have lost my senses a few times over this. Any insights letting me know I’m not going to die tomorrow would be helpful. Just being real.