Thanks for creating this forum, i am grateful to share my story with alot of people in same boat as me so it’s kind of encouraging, i had first diagnosed with help b in 2012 where i was going through routine check for some other issue , i tracked ot back from where i got it seems to be from a blood transfusion in 1991 at my birth when I had a life saving surgery, since 2012 I have gone through ultra sound scan , fibroscan, LFT’s and DNA for viral load and got to know from a liver specialist that my lft is fine and fibroscan score is also normal and my DNA load is negligible, I get paranoid episode in between and sometimes i just go in with life as it is , it is with me for more than 30 years now still wondering if it can suddenly harm me where my doctor says the virus is highly unlikely to harm you as it’s with you since birth , but due to anxiety i get my self in this continues loops sometimes back in 2018 i had this health anxiety and rushed to doctor again for all the test at that point also my viral load was not present and my LFT was just fine my doctor writes on prescription that no treatment required that does not give me solace and i am always go on web to search for answers where they write so many terrible things that can happen , i have never taken any medication for same and according to my doctor the virus was never active inside me but still I feel sad and sorry and ask sometime why me ?
I will be going for another LFT this year to check for my liver health as planned to be scheduled in next couple of months , just glad to be here and looking forward for any upcoming research that gets this virus totally out of my body once it for all.
Welcome to the forum and thank you for sharing your story. I am sorry that your hepatitis B has caused you such stress, but your doctor appears to be following the international guidelines correctly and liver disease progression is generally low in people with your blood results.
By chance, have you had a test for anti-HBs antibodies? If these are positive, then you would be considered to have successfully controlled the virus.
what is termed as inactive carrier? and can there be any chance of reactivation? Never taken any medication for same always termed as no treatment required for it. Just paranoid on certain days and specifically very scared to take the test again and again please help
Hi, my name is Daniel. I practice physical therapy and enjoy outdoor things like rock climbing. I recently started dating a climbing partner, who has chronic HEP B. I was vaccinated years ago, and recent antibody tests confirm “immunity”. I hope to ask several questions about her health, my health and intimacy. I am truly grateful for this community, and wish everyone well.
I newly joined this community. I’ve read through a number of the postings and I’m glad that I came across this, the exchanges among members are valuable.
A background on my HepB case. (This post ended up long as I wanted to document as much as I can, please bear with it).
I am female, 49 years old. Asian (Filipina), currently based in the US.
I was not sure if I got diagnosed in 2003 or 2005. I was remembering 2003 but when I searched for old records the earliest I can find is from a 2005 paperwork where there is an HBsAg reactive. In any case, I was 29-31 years old when I got diagnosed. It was during a routine job health clearance. The hepatitis B positive result was a surprise, I didn’t know how I got it. The usual questions- did I get it from health clinics(dentist… Etc…), from sexual partners? from when I was a kid? (I remember that I got sick(flu-like) a lot of times when I was a kid, I was also anemic have joint pains), or did I get it from birth? I don’t know.
Family health history
○ Mother at 57 years old died of cancer. Diagnosed at a late stage. The cancer spreads to the stomach, kidney, and liver. We never knew where it started. We don’t know what type of cancer she died from. We don’t know if she even had HepB. What we know is before the cancer she had hypertension.
○ I have 2 siblings and both told me they don’t have HepB
○ Father died of complications from Type2 Diabetes at 65 years old. I don’t know if he had Hepatitis B.
When I was first diagnosed, I didn’t get to talk about this to anybody. I didn’t understand the full implication of this virus. I never had a regular, primary care doctor or annual checkups when I was growing up in the Philippines. At 21 years old after graduating from University, I got a job and got busy during my early career, at 25 years old I began to travel outside the Philippines for work. So when I was diagnosed at 30, I was busy with these that I didn’t give Hepatitis B much thought in terms of following up on it. Although, of course, I did feel guilt, shame, and fear that goes with first learning about it. The doctor who told me about my result, when I asked what it means told me that later on, it can develop into liver Cirrhosis. After I got the job clearance, I started a new job, traveled again, and didn’t look into Hepatitis B. It’s just at the back of my mind, it gives me a little nag from time to time but I don’t remember myself being too worried about it. I guess because I didn’t have a doctor, I didn’t educate myself at that time on this disease and also didn’t talk about it with anyone. My health in general I would say is average if not below average, or I’d say not optimal, I get sick with colds easily. I get fatigued easily. I feel sick, especially during my monthly period. I’m also susceptible to feeling low during my period. I also have migraine (left-sided migraine) a few times a month. I also have gastro issues for example bloating and gas. All these symptoms still happen today.
Fast forward to 2010 (5 years passed after my initial diagnosis)- I got married in 2007(my husband is vaccinated). I gave birth to my first (and only) child in 2010. I made sure during the time I was pregnant that proper measures are taken to avoid giving hepatitis to my child. Also, at this time I am already living in the US and more routine tests are being made especially during pregnancy. I started to adopt a healthier diet after I gave birth- I removed soda, dairy, and sugar. I educated myself on nutrition and tried various cleanses and diets. I also started to have doctors look into my hepatitis b although I was not regular in monitoring at least twice a year as suggested.
Only in 2015 that I started to be followed by a gastroenterologist. I get my regular bloodwork- liver and hepatic panel, as well as abdominal ultrasound every 6 mos. There are times when I can do it only once a year, and during the pandemic in 2020, I am not able to do a checkup.
Here are numbers that I could find from some years of previous bloodwork.
HBsAg 3.027 positive (cut-off .039)
Present time, from recent results above- I’ve got elevated AST/ALT (esp. AST) from the test last month. Last year’s test shows 3970 HB DNA, down to 1330 last month. HBsAg quantification is >25,000 from last month’s test. These numbers, plus the 20 years that passed since my initial diagnosis, and my age at 49 years old, are all the reasons for my doctor to begin treatment. He believes that my chronic hepatitis b is active and that my immune system is continuously fighting this cycle of keeping the viral load low, thus an up and down on my HB DNA numbers which he thinks is only damaging my liver. I don’t have a comparison of my HBsAG quant from the current >25,000 to previous years. I am waiting for the result of my abdominal ultrasound. My recent fibro scan result though is normal (161 cap dB/m, 3.7 E kPa)
For the start of the treatment, my doctor prescribed Vemlidy. I just received the 30-day supply by mail after going through the process of requesting co-pay assistance. The cost of the 30-day supply is 1088 USD. With the co-pay assistance, I was told that I can get a maximum of 5,000 USD per year to assist with the total annual cost. I plan to start taking Vemlidy in the next coming days.
On a different but maybe correlated note, is a marker that I was recently diagnosed on from Nov. last year test that is dsDNA antibody positive. This marker was ordered as part of a comprehensive bloodwork by a neurologist due to my migraine. The result of my neurologist appointment showed a deficiency in Vitamin D and this positive dsDNA. Also, I found out that I have high blood pressure. It was the first time that I get to have a high bp. My primary care physician prescribed Lisinopril 5 mg. I’ve been taking it for the past 2 months. Back to the positive dsDNA, I was told by the neurologist to make an appointment with a rheumatologist to further look at this for a possible auto-immune disease that may not be related to hepatitis B (e.g. lupus SLE, although my ANA result is negative). My hepatologist does not correlate the dsDNA positive with my chronic hepatitis. My rheumatologist appointment is next week.
I hope to give an update to the community from time to time on how the treatment goes and how is overall health in general as I live with CHB. Sending positive notes to everyone.
My name is Gavin, I live in Texas, US for 15 years now. I have a inactive chronic hepatitis 21 years, when first diagnnosed I was 19 when I try to donate blood. My mom has a same situtation probably it is a vertical transmission.
Recently I have realized that i have Steatorrhea and my uncled died from pancreatic cancer when he was 55 years old. I always think that Steatorrhea caused by my chronic conditions. I realized that it might be many other reasons, so I will see GI specialist , and they ordered CT Scan, blood tests, fecat tests etc… and they will go over the results.
I am really thankful that I found this community. Thanks for starting the community.
Welcome to the community, @gavin. Sorry to hear about all your health conditions you are going through, but great that you are being pro-active and got to see a specialist. Hoping the best for your upcoming results and hope you find the support you need here.
Hi, Last year i donated Blood after that i got to know i ave Hep B, First i thought if i take vaccination i would be fine but after doing little research i got to know if am infected vaccination wont do anything, last month i went to full body check up and told to physician i was once tested positive for hep b so he requested to do hep B blood panel, results came back as positive for hep b. i was trying to find appointment to liver specialist. i am 31 years old no symptoms . ALT levels are little high rest everything normal.
Hi, I just feel regretful that I’ve not found this forum earlier. In the past, I tried to connect with other HBV sufferers on the domestic online platforms but most of the them are filled with advertisements or other kinds of spam.
I was diagnosed when I was in high school, around 16 years old. And now I’m 30. At first, I was just a carrier without symptoms. Things changed when I was in college. After a medical examination, I was told that my ALT and AST are very high and further examination is required. It turned out that my HBV DNA is very high too. To be more specific, HBsAg, HBeAg and HBcAg are all positive. The doctor advised that I could first try the interferon therapy. However, it turned out useless for me after about 2 months. Later I was prescribed telbivudine and started the long journey of oral antiviral therapy. In the following, I had changed the oral drug to entecavir and tenofovir disoproxil right now. The HBeAg turned to negative a few years ago though.
I’m right now pursuing PhD degree and I’m concerned about the possible obstacles pertaining to my health status if I would like to go abroad to study or work.
The way I found out I was positive is quite interesting: my 89 year old mother who was in perfect health, got sick (ankles swollen) and admitted to the hospital. Her doc was shocked…and called in a team of various doctors. Well, one of her blood tests came back that she had hep B.
I don’t know if I got it from my mother but my hepatologist and primary care doctor said not to dwell and think about it too much.
I’m now in the hands of a hepatologist that I see every 6 months. When I first went, a fibrascan was ordered which was fine. I get an ultrasound of the abdomen every 6 months which comes back fine. He takes alot of blood for tests and my blood test for my liver is normal. So, I’m still baffled and wonder what will happen next. I really don’t understand the blood tests other than they appear in an app on my phone and my results are right in the middle of the range which is good.
The tests he takes are HBV Real-Time PCR, prothrombin time, basic metabolic panel, liver test, AFP tumor marker, cryoglobulin, and that’s about it. I am reading other user posts about ASL and AST tests but he hasn’t done them. Should I ask him? I am going to see him in 2 weeks is there something I should ask or a blood test I should request?
I feel great and I’m in fairly good shape. When will things start to go downhill or can you live with this virus and have a normal life and age expectancy.
Thanks for listening and I appreciate having this forum to learn about Hep B too. I’m sorry this is such a long post.
Thank you all for sharing your stories and hope you find the support you need on this forum. Please feel free to read around to see if other threads can inform you and answer your questions. The main things are to keep positive and maintain monitoring of your condition.
To answer some specific questions:
ALT and AST tests should be part of the liver test that you have mentioned.
Many people live completely normal and healthy lives despite having Hepatitis B, particularly if it is well monitored and are provided therapy when necessary.
Hi all. I’m in a state of shock. I had routine first trimester labwork done this past week and the Hepatitis B Surface antigen (and neutralization confirmation) came back positive.
Unfortunately, lab work for my OB just pops into my portal so I received this diagnosis by myself bright and early Saturday morning when looking at what I thought would be routine results. (side note: there should be a stop-gap where abnormal results aren’t just sent out like this and are seen by your physician for them to notify you)
I’m shocked and can barely catch a breath.
My previous pregnancies were all negative, I received the vaccine as a child, I have never been exposed to any needles in my life that were not in a healthcare setting, and my husband and I have been monogamous our whole 15 years married (yes, I trust him). My husband is in the healthcare industry so he was routinely tested about 10 years ago and his was negative at that time as well. His healthcare job is low risk for catching it there and has had no incidents that would be a probable point of infection.
We are stupefied about how and where we could have gotten this. I know it can be caught in other ways, but with the most common ways not applicable to our situation, it adds severely to the shock and disbelief.
I’m scared… scared for myself and this pregnancy, scared for my children and spouse… My brain is going crazy starting to link physical symptoms my spouse and youngest child have been having yesterday to possible hbv symptoms I have researched.
I know I just need to take a step back, breathe, get bloodwork done for the whole family (and detailed bloodwork for myself), and speak to the doctor. But as I am sure everyone here can relate when they were first diagnosed, every hour feels like days/weeks/months as my overly analytical brain worries about the unknowns.
I’m glad that I found this community as a resource for support and information.
Welcome to the forum and thank you for sharing your story. I’m sorry to hear about the terrible time you’ve had and it is really a terrible way of finding out your diagnosis. As you have mentioned, there are a lot of people that have experienced this same thing and understand what you’re going through right now. Please know that you’re not alone and these feelings will pass with time. Also know that you can live a healthy and long life with hepatitis B with appropriate monitoring and support.