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.
1 Like
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
4 Likes
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
3 Likes
Thank you so much for creating this community
3 Likes
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:
-
Log into YouTube
-
Search for “San Francisco Hep B Free - Bay Area”
-
View “Living With Hep - Episode 5: David Doan”
3 Likes
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
3 Likes
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.
3 Likes
Dear @MeDNP,
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.
Hope this helps,
Thomas
2 Likes
Hello all
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!
Li
4 Likes
Dear @bloke,
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
3 Likes
Hi Li,
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.
-Paul
2 Likes
Thank you Thomas for setting up this community. I believe many me included will and can benefit from this community and hopefully I can help others in one way or another. So keep up the good work.
2 Likes
Thank you Paul for the kind words. I’m fortunate to have learnt English during my days at school. Originally I had planned to join a Chinese online community. But surprisingly I couldn’t find a good one. So I turned to Bing.com and ended up here.
1 Like
Hello Kaipe
I wish you all the best!
Li
Hi bloke.
Welcome to the community. You are definitely in the right place where you will find encougements and splice.
Kinoti
Hello Kinoti
Thanks. I hope you too can get the help you need here. All the best to you!
Li
Hi Li, just wanted to add my welcome to you, too. So glad you found us. And your English is perfect. We all understand you. The question about whether to start interferon to reduce your risk of developing HCC is interesting. I’ve never heard of any physicians recommending both Entecavir to treat HBV and interferon to reduce HCC risk. In my opinion as a knowledgeable nurse and who lives with hep b, I do not think that you need to take interferon. Assuming the Entecavir reduces your viral load to ideally undetectable and that your ALT levels return to normal, then your risk of progressing to HCC should also be reduced. Not even sure why your doctors would want you to take another drug before evaluating whether you’re responding well to the Entecavir?!! Hopefully other medical experts can weigh in (calling @Jacki, @Jack_Wallace and more) and either confirm what I’m writing to provide other feedback to your question.
In the meantime, my suggestion is to wait until you hear from other medical experts on this forum before making a final decision about interferon. And hopefully the Entecavir will be enough. Thank you again for joining this forum and please keep us posted on your journey. Always, Joan
2 Likes
Hi Yadong Li @bloke,
Welcome to join here and to share your hep B journey. Your english is almost perfect and certainly better than mine. I am in the US but originally from Taiwan. We have a Chinese language FB group dedicated to viral hepatitis. If you can use facebook, welcome to join us @ 台灣肝炎資訊網
Since a few experts here tagged me to contribute to answering your questions, I am sharing a few thoughts here with everyone. However, I think your knowledges and your doctors’ expertise are at the forefront of HBV management.
The purpose of your doctor suggesting to add interferon (peg-interferon, specifically) after entecavir is actually to increase your chance of functionally curing HBV (make HBsAg disappear). If that works, then yes, your risk of developing HCC will be further reduced. There were a few such trials in China, and some do show increased efficacy of this sort of “add-on” strategy. If you are functionally cured, then you can safely stop all HBV medication. However, a recent presentation by Dr. Norah Terrault pointed out that another trial of combining entecavir with peginterferon did not work, so whether you want to take this strategy as recommended by your doctor is really up to you, since there is likely some side effects of peginterferon, some of the side effects could be long-term and might worsen your insomnia. I am attaching a link to the presentation by Dr. Terrault, which is contradicted by Dr. Kennedy for your reference here: When to Treat Immune-Tolerant Patients with HBV (B肝免疫容忍期何時該治療) - YouTube
In any case, I think you will be just fine with long-term entecavir alone (or TAF, which a generic is available now in China), since you don’t seem to have much liver damage yet.
Best wishes, and thanks for sharing again. I am hoping to be able to get connected with you as well, since we are also trying to learn from our Chinese experts on the other side of Taiwan strait.
Jacki
1 Like