Hey there
I have hepatitis b and cirrhosis of the liver and it’s effects your other organs. My kidneys are failing and I have been told 2 different times by different doctors that if I don’t get a transplant I will die
And I’ve been told that they can’t do anything about my liver until it turns to cancer by 2 different doctors and another doctor said that is stupid not to be proactive but none of my doctors work as a team. I hear something different from all of them and don’t know which to believe It’s very frustrating and I have been fighting this battle for almost 4 years now and I’m tired. Thank you for letting me vent.
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Hi @Davis2267,
Welcome to the community. I am sorry to hear about your situation. I am not sure where you are but can you find a different doctor? It seems this is a serious issue but like you said your current providers are not taking it seriously giving different suggestions. Maybe find a different provider for a new opinion. This might be so frustrating and hurting you I bet. My heart goes out to you and I hope you find a provider that will listen to you and be proactive about your life and health. People should not be dying in 2023 due to this virus. It really angers me when I hear stories like this. Best, Bansah1
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Hello @Davis2267
Thanks for venting:) one of the reasons we are here.
I’m so sorry about your situation and experience with the doctors. It’s frustrating that you can’t get a universal answer. I get it. Who do you believe? We are supposed to trust these doctors, we don’t have a choice.
What country do you live in?
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Hi everyone! My name is Amy, I live in the US, and I found out on Friday that I have Hep B. My doctor told me that she thinks it is a resolved infection, but that it is likely transmissible. I had been vaccinated as a baby, but have not received vaccines as an adult. It was discovered when I tried to donate blood two times. The first time that the core antibodies were flagged was in 2022, but I was told by my PCP that it was likely a false positive after running a hepatitis screening panel and not finding anything concerning. I tried to donate again in 2023, and was permanently banned from donating. I scheduled an appointment with a hepatologist then and (after waiting 7 months) just saw them three days ago. The results of the tests were as follows;
AFP Marker- 1.2
Hep B Core Antibody IgM- Non-Reactive
Hep B Core Antibody Total- Reactive
Hep B DNA PCR- Not Detected
Hep B E Antibody- Non-Reactive
Hep B E Antigen- Non- Reactive
Hep B Surface Antigen- Non-Reactive
Hep B Surface Antibody- Non- Reactive
ALT/AST: 28/19
We have absolutely no idea of when I had it- only a 9 month time frame. It’s expected that I got it by working at a psychiatric hospital with someone that was infected
. Both of my parents have been vaccinated for a few years now, and they have both tested negative.
I know that this isn’t the end of the world, but it feels very discouraging for a lot of reasons. Donating blood was something I always did to honor my grandfather after his passing, and it bothers me more than I would like to admit that I can’t anymore. I know that Hep B can’t be transmitted through touch, but I’m also planning to work in the school system after I graduate with my degree so there is more than a little fear about accidentally infecting one of my students. I’m also very scared of how potential boyfriends or guys that I date may feel, and feel “undesirable” (as I was told by someone when I explained that I was being tested for Hep B). I’m in my early 20s, so the idea of no one wanting to date me does bother me.
In short, I feel very confused, more than a little hopeless, and sad. However, I’m hoping that this community can help me understand more about Hep B and make this journey feel a little less lonely. Thank you for reading!
Hi @origaminotamy,
First I want to welcome you to the community. Based on the results provided you actually do not have hepatitis B, no immunity, no viral DNA. The only test on the list that is positive is HBcAb which indicates that you were either exposed in the past or current. It still do not make any sense. If you were exposed in the past and it is resolved, why don’t you have surface antibodies? And if you are currently exposed why is surface antigen negative and anti-HBc IgM negative? Is it possible to get your surface antibody measured to see whether you have any at all?
I will have to agree that maybe the core antibody result could be a false positive, because the other test results do not support the idea that you were infected in the past or currently infected.
Talk to the provider and see if it is possible to do the core antibodies test again and have the results confirmed by the labs. This might have caused you some sleepless nights but your results does not indicate that you have hepatitis B currently which is a good thing. The next step will be to see whether vaccination is possible since you do not have protection even though you mentioned you were vaccinated as a baby.
I get why you will be frustrated. Talk to your provider further about this, maybe get your surface antibody measured, a test for anti-HBc IgG and a confirmation for HBcAb test. I hope this is a bit helpful. Thanks, Bansah1
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Thank you ! for answer . Yes, I have access to the medicine, I am in the USA. Tell me, how long did you take the medicine? How long ?
Hi @Davis,
Really sad to hear about your experiences. It might be worth talking to a doctor who has specific experience in Hep B. Hep B foundation has a physician directory that might be useful: Physician Directory (U.S. & International) » Hepatitis B Foundation
Hi @origaminotamy,
Welcome to the forum and thanks for sharing your experiences. Regarding these sets of tests, I agree with what @Bansah1 has suggested: there have been instances of false positives. It would be worthwhile getting another test as it is only the HBc antibody that is reactive (while an infection would return a postive surface antigen test as well).
Hi @Berserk123,
It is best if you go to a specialist to determine if your condition would benefit from treatment. There are some criteria to meet based on your lab results and a doctor who can order the tests and physically examine you would be best positioned to determine this.
Thomas
Hello @Berserk123
If you are referring to the anti-viral medication. It is one pill a day usually taken for the rest of your life or until they find a cure.
I do not have any side-effects from the medication. You should see your doctor.
It’s very important to be monitored every six months, blood, test and ultrasound.
I do not know if I am doing this correctly. I’m trying to introduce myself and post about my circumstances. So, here goes:
HepBCommunity.org intro post
Hi Everyone. I’m very touched and grateful to Thomas Tu for founding this community and to everyone else here who keeps this forum alive. Thank you, all.
Please excuse the length of this introductory post. Like others, I stumbled upon this supportive forum serendipitously. I was seeking an understanding of my (56-year-old) chronic Hep B that I was given to believe was permanently dormant. Now I’m also trying to cope with and understand a cirrhosis diagnosis that I was only recently apprised of. I’m still in shock but not panicking (yet).
In the UK, c. 1968, I was infected with HBV and had an acute episode for about a week or so until jaundice and other symptoms cleared. The only treatment was convalescence; no follow up, advice or cautions.
I moved to Canada in 1975 and, c. 1990, was seen at my family clinic, by a (now retired) doctor, who ordered bloodwork that showed I was a chronic HBV carrier. There was no treatment, no referral to a specialist and apparently no cause for concern except to have my spouse tested (negative). Presumably, my ALT was normal (?) – there are no records readily available.
I do have records for 2008: ALT=30; MCH=34.1, Neuts=1.9. No follow up; and, 2012: ALT=36. Again, no follow up.
In April 2022, bloodwork ordered by the same family clinic (but different MD), again showed slightly abnormal RBC Indices: MCV=100, MCH=34.
In August 2022, I was hospitalised and diagnosed with bradyarrhythmia. Two separate blood panels were ordered and some results were pertinent to HBV:
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Erythrocytes=4.38, MCH=33.6, Albumin=41, Creatinine=51.
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MCV=99.1, MCH=33.5, Platelets=141, Creatinine=53.
In April 2023, the same MD at the same family clinic ordered more bloodwork:
RBC Indices: MCV=101, MCH=34, Platelets=152.
After asking him about the persistently abnormal RBC’s, he asked if there was a history of any liver issues. He was unaware of the HBV infection that the previous doctor had been monitoring, so ordered a liver panel, June 2023, and made a referral to an hepatologist. Bloodwork results as follows:
Hepatitis B DNA Viral Load 6.22E+1 IU/mL
Hepatitis B Surface Antigen: Reactive
Hepatitis B Core Total (IgG+IgM) Antibody: Reactive
Hepatitis B “e” Antigen: Non-reactive
Hepatitis B “e” Antibody: Reactive
Hepatitis C Antibody: Non-reactive
The hepatologist ordered more bloodwork in Oct 2023, plus an ultrasound in Nov 2023.
Quoted from her report: “Hemoglobin 157, WBC 5.6, PLT 160, INR 1.1, Bilirubin 7, Albumin 43, AST36, ALT29, ALP67, GGT18, AFP 3, Creatinine 71, EGFR 88, Glucose 5.0, Cholesterol 5.56, Triglyceride 2.53, HDL 1.47, LDL 3.0, Ferritin 238, Ceruloplasmin and Alpha-1antitrypsin levels-normal, Autoantibodies -negative, Quantitative immunoglobulins -normal TSH 2.25, Hepatitis A IgG antibody – positive”
The ultrasound summary is: Liver = 12.8 cm, heterogeneous echogenicity, mildly nodular capsule, no focal hepatic lesion. The pancreatic duct is mildly prominent measuring 0.3 cm, otherwise, normal appearance. Abdominal aorta: No aneurysmal dilatation. Gallbladder: Normal. The gallbladder wall = 0.2 cm. Common bile duct: The common bile duct = 0.6 cm, no dilatation. The right kidney = 9.1 cm with multiple parapelvic cysts. The left kidney measures 8.7 cm also with multiple parapelvic cysts. Spleen = 7.1 cm, no splenomegaly. OPINION: no focal hepatic lesion.
The Dec Fibroscan was performed at the hepatologists office. Paraphrasing her report: “19.4kPa=F4 early cirrhosis, CAP266dB/m=S2/3 in keeping with increased liver steatosis and suggestive of early cirrhosis. No other intra-abdominal pathology of note.”
She goes on to say, that she suspects that, in the past I may have had a prolonged period of liver inflammation that led to fibrosis, and that while there’s no evidence of ongoing inflammation, guidelines for patients with cirrhosis suggest an antiviral (Tenofovir 300mg o.d.) to decrease the risk of HCC
This is all brand new to me and somewhat confusing! Even more so because I’ve been reading papers and abstracts since December that, at one moment give me hope, and the next, dash it. I’m hoping that forum members can help me understand the results above.
While I’ll be 75 next month, from what I’ve read, I recognise I shouldn’t be lulled into complacency based on the lack of detectable symptoms for 56 years. I’m very concerned to learn of my cirrhosis and wonder if it is an inevitable progressive process, or if the hepatologist is correct about it having happened some time ago given the lack of ongoing inflammation at present. That is, can the scarring process just cease on its own?
Also, some assert that the liver can regenerate but not once scar tissue eventually interferes. This may be very naïve but how can you tell the degree of scarring? Is this measurable somehow, and what is the significance of stable ALT/AST in all of this?
I have follow-up bloodwork and an ultrasound booked for May. I’m considering having another Fibroscan if I can find a provider. My thinking is to treat the first one as a baseline. I have no idea if the results of an additional scan in just six months could show either worsening, improvement or stasis.
I’m a bit trepidatious when it comes to medication. I’ve barely used any over the years and presently use none. From other reading, apparently Tenofovir (nor anything else) can make one completely virus-free. Is this true? How is its efficacy measured? Is it undetectable viral load plus well-functioning enzymes? How would that be distinguished from a chronic carrier who already has those? (Not that I do.)
After using an antiviral, do you produce HBV Ab? Why do you have to take the antiviral for life? Is an antiviral actually a kind of “virus suppressor”? What does DNA Viral Load 6.22E+1 IU/mL actually mean? With a low viral load does it mean an antiviral could be more effective?
So many questions. Thank you in advance for taking the time to read this and for any clarification.
Hi @karp,
Thanks for sharing your story and sorry about your confusion.
Yes, your hepatologist is correct. Liver damage from Hep B can happen in spurts over time and can cease on its own. However, it can also be controlled by antiviral medication to reduce any ongoing inflammation.
The past accumulated liver damage can be measured by fibroscan, which you have taken. Essentially, sound travels differently depending on how stiff your liver is. If there is scar tissue, your liver is stiffer. The fibroscan measures this and shows that your have cirrosis.
ALT/AST is a measure of current liver damage.
Antivirals like tenofovir stop the virus from producing more versions of itself. However, it doesn’t get rid of the forms of the virus in the liver that have already been established. So, you need to keep taking them to maintain suppression of the virus (measured by a reduction in viral load). It also reduces on-going liver damage and inflammation (measured by ALTs).
A viral load of 6.22e1 means for each mL of blood you have 62 units of virus (~300 copies) per mL of your blood, which is a very low level.
Hope this helps.
Thomas
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Thank you so much for taking the time to reduce some of my confusion. It will take some time for me to absorb the implications. I think I’m still in some kind of (hopefully, post-) shock. I may have more questions. You and your colleagues are doing such important work. Thank you again.
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Hi Martin, am glad to learn that we are both Ugandans. Am specially located in kiryandongo District and God’s grace shall one time make us surely meet one day.
Hi kinoti, can we chat privately or even exchange contacts if you don’t mind?
My name is Sunday, my hepatitis is inherited from my parents and am now 31, please am I still vulnerable to liver damage?
Hello and welcome to the forum. I’m not an health expert and I’m sure they’ll welcome you too @ThomasTu @john.tavis @availlant .
Liver damage can occur when high enzymes and high viral load. Of course you have to check with your health care provider for ultrasound or fibroscan.
Best Gregory
Hi @Sundaykkt12,
Welcome to the forum and hope we can support you with your condition.
Regarding the hepatitis, if you are HBsAg-positive still then yes there is a risk of liver disease progression. It is important to maintain monitoring so you know what your condition is, as liver damage can occur without any symptoms.
Hope this helps,
Thomas
Thank you for the response, I will be checking my condition henceforth
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