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.
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.
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.
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
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
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.
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)
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:
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.
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.
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.
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.
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.
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
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.
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.
Hi me DNP
I am sincerely sorry for your latest feeling. I hope and pray nothing is very wrong and you will go over it and continue with your normal life. Meanwhile, feel warm in this community and all shall be well. We are here for one another since this is a war we must conquer together.
Regards
Kinoti.
Thank you for sharing your story and sorry to hear about the stress you’ve been under.
As you can see from this active community, many people live normal lives even if they have hepatitis B or liver fibrosis. You are not likely to die tomorrow, as you have been living for decades with it already. Just know that you are doing the right thing and getting the right care.
First contributor here. Apologies for not reading all the previous posts.
I’m a 43 year Chinese male living in Beijing. I was first diagnosed of HBV when I was 12/13 years old. Back then the doctor said no treatment was needed as: i) there was no cure. ii) many patients could live with it without serious consequence. In retrospective I regretted that I may have missed the best opportunity for treatment. But it was in the early 1990s and China was a very poor nation which meant the medical staff in a small town where I grew up lacked the proper training and I even doubt there was a guidline available to the medical staff like today. So as much as I regretted it, I could understand. Though no proper treatment from the said doctor, my parents did buy some Chinese medicine from a private firm for me that was proclaimed effective only to be proved later as a scam. Then in 1996 my condition was discovered to worsen after a medical check conducted by my university. This time I received a treatment suggested by a new doctor which was thymopolypeptides injection(I don’t know if it was the correct English translation). I cannot remember how long this treatment went on. I think it was probably three to six months before it ended. My condition was stabilized but without any material improvement. Suggested by my uncle who is a surgeon I turned to the Chinese herbal medicine afterwards. After taking the herbal medicine for probably one year my HbeAg turned negative. I believed those herbal medicine was working then but was less sure about it now(my attitude towards Chinese medicine in general has changed a lot during this period of time due to the fact that their working mechanism is not clearly scientifically defined). Around 1998/1999 I stopped the herbal medicine and have been off treatment of any kind till the Aug of 2021, during which I did do a regular blood test and ultrasonic scan annually though. The ALT has been within the normal range though what should be defined normal is open to interpretation among countries as I later found out. I just carried on as a normal healthy person without giving it a second thought only with the exception of drinking(I don’t drink. The most was a few cans of beers and one or two glass of red wine per year). A few doctors suggested I should take antiviral therapy which I declined. It was during this time my grandfather and a uncle both from my mother’s side died of cancer. One of them may have died of liver cancer.
Then last June my results showed that my ALT was abnormal. The MR result showed there were multiple small hydatoncus/cystis (I don’t know if it was the correct English translation) which my doctor said were fine, no need to worry about them. Later I reflected on what might cause the worsening of my condition: i) being over 40 years of age may statistically mean that my body is not as strong as it used to be. I read quite a few papers on HBV which placed patient older than 40 years of age as high risk. ii) I was on medication for a short period of time before the HBV test to relieve body pains after I got injured when doing some heavy lifting at GYM. And I also took a medicine a few times for insomnia as well. Those drugs may contribute to the results. And iii) the HBV inside my body is re-activated now more than before.
With those results and my medical history, my doctor strongly urged me to take antiviral treatment with Entecavir to begin with then interferon injections. She recommended the latter as a means to reduce the likelihood of progression to HCC after she learnt my grandfather and an uncle died of cancer. I also sought advice from a second doctor about the interferon. He seemed not so keen on it as the first doctor. Both doctors work in hospitals that are in the top ranks in China in terms of treating HBV patients. I have no reason to doubt their expertise on the said subject.
Now I have been taking Entecavir since then but undecided on whether I should take interferon later on. My primary goal, if I decide to go ahead with interferon, is to reduce the risk of HCC considering my age and my family medical histories.
That’s my story. English is not my native language. So please let me know if my words confused you. And I wish all the best to you all!
Welcome to the community and thanks for sharing your story. No need at all to be self-conscious about your English, it is perfectly clear. We also have many Chinese speakers on the forum here if you need to reach out in your native tongue (e.g. @Jacki, @yuan, @stao, @Stephenw, @Civilke ). There are also some Chinese resources here: Hepatitis B Chinese webpage launched.
It is good that you have found some top specialists to monitor your condition. Entecavir has been shown by many many studies to reduce the risk of liver cancer, so you’re doing the right thing in terms of achieving your goals.
Hope you can find the support you need here,
Thomas
Welcome to the community and thanks for sharing your story. I just wanted to say that you are very articulate for speaking English as a second language.
