Newly diagnosed with Hep B - blue25

Hi

I am new here. While I suspect all along that I may end up being active one day, I didn't think I would be this lost. Do hope to get some help and support here.

I have been a carrier all along, not sure if I was active or dormant. I only found out about my chronic status during my first pregnancy in 2006. I didn't think much about it then and got busy as my pregnancy got very complicated. Subsequently, my first born was very premature and the first few years were tumultuous with lots of hospital check ups. I had another child just last year. Both my kids are vaccinated and Hep B free.

My brother is also a carrier and he seems to be ok and following up regularly with a dr for blood tests.
Since both of us have it, I suppose we can conclude it came from our mother via birth and we were not vaccinated properly after that. My mum is in her 60s, healthy, and remains undiagnosed - she doesn't want to know about it.

I had a first appointment in June 2014 with a Dr from the Gastro/Hepatology department. Following that, my results were:

HBV DNA - detected
HBV Load - >1,000,000,000 IU/ml
HBV Load Log - >9.00

Anti-HAV Total - Reactive

ALT - 129
ALP - 74
Bilirubin - 16
Albumin - 38
Alphafetoprotein - 5
Anti-HBe - non-reactive
HBeAG - reactive

I've had an ultrasound, results of which was that nothing detected, and liver was of normal size.

I don't quite seem to understand what these figures are, but I was told my disease is active and I need to be on medication to reduce the viral load. So I started on Viread.

I'm not really sure what I need to know, but I would like to understand what readings are useful for me to get a sense of what I am going through so I can make some mental preparations. At the moment, those huge figures are worrying.

Appreciate any advice.

I can't believe your mother won't get tested. Even if she is healthy...

Good thing your kids are Hep free.

Hi blue, welcome to the board. Our numbers for those two tests are measured in mg/dL, so it is indeed different here in the United States.. our viral load is measured the same. Am I seeing that number correct? Over 1 Billion? That's very high. I'll try to explain how it got that way for you.

Most Chronic cases are dormant. At some point in their life, their immune system stops working to fight the virus and for some reason, it goes active inside of you. That's the challenge that scientists are trying to figure out, how it goes active and what in the immune system stops working.

In your case, your pregnancies probably weakend your immune system, starting with the first one. When this happened, the virus became active in you and started to increase. Your ALT and ALP are liver function tests. Hepatitis B not only attacks your liver, but also finds it's way into your bloodstream. Since your liver function tests are the numbers they are, which is considered mildly elevated, it can be assumed that you were a chronic case all your life. If this were a recent infection, those numbers would have sky rocketed to over 500.

Viread should be your first and only line of defense. It knocks down the viral load in your bloodstream. Unfortunately, it does not clear the Hepatitis B from your liver as the virus integrates it's way into your DNA so you end up living with it (if it were recent, the chance is 90% that you'd clear it naturally). Over time, your viral load started to probably increase. At some point it may have only been dormant at 1,000 but once it went active, it started to "multiply" inside of you. The longer you remained untreated, the more it kept going.

Once you start taking Viread, you'll notice a great decrease in viral load. However, please keep in mind that if the viral load even reaches zero, you are not cured of it. You will probably end up taking this medication for your entire life or until they find a cure or you are cured of it. The current path of treatment, depending on the person, is 2 years or 3-5 years on Viread and then add on Interferon treatment once it reaches that point and it is undetectable. Hopefully, by that point, they will have released the cure drug :)

Your lab reports are helpful and your doctor did a great thing by making you go on the meds. You need it. Do not get discouraged if your numbers don't decrease within the first month. It's a slow process, but Viread as a 7-10% chance of cure down the road... even though it may take 15 years for some. You are missing some important lab reports, including your Hepatitis B Panel which tells you a little more in regards to whether you have antibodies and whether or not you have the Antigens.

On top of this, you may want to discuss with your doctor the following:

-Fibrotest to detect your Fibrosis stage as well as FibroScan to determine if you have any liver damage (It's a great substitute for a liver biopsy and has given better results, I believe it's available in Singapore.)
-Hbeag status/test
-HBsAg in quantitive
-Keep following up with the Ultrasounds

Like you, I am a Hep B sufferer. Did you have any clinical symptoms when you first learned about it? Most people who were born with it, do not have clinical symptoms and go on living normal lives. If you were born with it already active in your body, which could also be the case, then it's possible that you are just so used to having this and don't realize symptoms.

Also, like you, I suspect I could have gotten it from my mother. I will never know that though as she is deceased, and I only discovered it last year when it was active in me. If it did not come from her, then I suspect from an ex-gf or a dentist needle and I somehow went chronic. I talked to my father about this and suggested he get tested in case my mother had it, but he is old school too in his 60s. He said he feels fine so no need to check it, plus he doesn't want my step-mom to freak out if she finds out he has it cause she could get it too. Despite my pushing, they want nothing to do with it. Try not to think about how you got it and worry about your treatment now!

P.S.
It's not surprise you were not vaccinated. The vaccine was not available until the 80s.

Post Edited (luckyman316) : 7/22/2014 7:24:49 PM (GMT-6)

Hi luckyman316,

Very insightful sharing from you. Really appreciate that. To be honest, i have no symptoms at all. But i did notice that i am so tired all the time aft my second child was born so i suspect the virus was activated within the past one year.

Yes, u r right, the billion is really scary.. That's the number im really more worried about. My dr has given me an appointment in 4 months time. I have a high threshold and tolerance level having gone through a few complicated pregnancies and learning to wait it all out and comply with medical experts so i am mentally prepared to take the same route for this.

I think a part of me didnt want to know my condition earlier so i could conceive without stress and deliver a few kids for my husband and his parents who love kids. I was never ready until I've had my second boy last year and something inside of me just knew its time. I just hope its not too late and there's still a good chance.

I am very encouraged by your fighting spirit. Your blog has given me loads of insight and strength to go find out and do more for myself. I hope you continue to share and shed light for those of us who have been newly diagnosed.

Hi themiz,

Our Asian culture is still pretty much conservative, though it is definitely changing. Many of our old folks still prefer to die "naturally" or so they think. Costs of healthcare was high in the past hence, people preferred to take this stance. The other is a stigma associated with being diagnosed.. Everyone avoids you because you are diseased. Thankfully we are getting more informed.

Post Edited (blue25) : 7/22/2014 9:39:50 PM (GMT-6)

I am really happy you are more hopeful, blue. That has to help emotionally! Luckyman, our forum Hep B guy, has a treatment thread. He has documented much info and test results. Check it out!

Really happy to see you feel encouraged. Positive attitudes always help. Hopefully, Luckyman will pop in and see your post here. Big Hugs

Blue, good to see you are doing well and the meds dropped it a lot in a short time. Now the trick is clearing the rest. Always a fun time, right? This could take a year or more and keep in mind, it doesn't mean you go off the medication when you see you are "undetected". Once you "seroconvert", if you ever do, you still have to take the meds for a few more months to make sure you build up the immunity.

I saw that you were depressed? Do yourself a favor and get a Vitamin D test ASAP. Chronic Hep B sufferers are VERY deficient in Vitamin D. I believe the test is the Vit25-OH-D you need, or something along those lines. Not enough will lead to severe depression and anything below 10, could potentially put you in the hospital. When mine went active, it hijacked my Vitamin D and the number was as far down as 14 ng/dL! That number needs to be at 100 for us! When I started my treatment, I got it to 76. How so? Took 10,000iu daily.

My suggestion, get the test and let us know where it's at. More than likely you'll have to start with 10,000iu a day (doctors will disagree and the most they told me to take was 2,000iu which was NOTHING). After you do this, recheck in 3 months. Some doctors will prescribe 50,000iu a week of Vitamin D3 and this is ok! You can find as much as 10,000iu online from sites like amazon or puritan's pride.

My other suggestion, since doctors don't measure this, is to start taking Vitamin K2 with MK4 & MK7. Viread tends to hijack the calcium from your bones and can make you weaker (do NOT take calcium tablets, it makes it worse) so you will need Vitamin K2.

As for having children, yes you can have children but fix yourself first until you feel well enough to do so. And make sure your husband is vaccinated and any future children you have, are also vaccinated (as well as current children). Hope I have been of some help :) Hang in there, it *does* get better. I promise!

(Please Note, I am not a doctor so my advice is just a recommendation from what has helped me and not a doctor's advice)