Being on medication and still going for tests

I was diagnosed with hepatitis B in December 2020. Because I didn’t clear the virus within 6 months, I was prescribed Tenofovir, which I have been taking for about three years now. The virus is no longer detectable in my blood. But here’s my question: Why do I have to keep going for yearly ultrasound scans and blood tests three to four times a year when I’m taking the medication daily? I find the tests and waiting for the results a nightmare psychologically and I’m tired of it. Let’s suppose the blood tests showed that my liver values were elevated or the ultrasound showed fibrosis, for example. I’m already taking the medication so what more could I or the doctor do in that case?

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Hi @Barry,
I understand your frustration. The psychological issue is real and I do empathize with you. It is something we all go through as well each time we need to complete these tests. Having to wait for the results does not help. But here is the issue, the fact that we are taking antivirals does not guarantee that our condition could not silently change over time. Because most often we will not feel anything when something changes, using ultrasound and blood work are the only ways for our provider(s) to know whether we are stable or some changes are going on. HBV is a very tricky and complicated virus. It can change without any warning at any time. Without these tests it will be hard to tell since many patients will not develop any symptoms. And sometimes with such changes one might require more care beyond just the antivirals and that is why we do these tests so they can catch such issues ahead of time. I believe that at some point your provider might order these tests twice a year.

Initially, I was doing labs every 3 months and ultrasound every 6 months. But after 2 years or so, when things got stable enough my labs were adjusted to every 6 months. So I do 2 tests (blood work and ultrasound) twice each year. It can feel a bit too much, but there is a great reason for it. We do it for our own health and well-being. Hang in there, we hear you. Bansah1.

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What do you mean by the Virus is no longer detectable

The antiviral medication means that the virus no longer shows up in my blood tests. But I still have to keep taking the medication in order to keep the virus suppressed.

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But what precisely do you mean by “care beyond just the antivirals” exactly? What’s the treatment for fibrosis, for example? Or what’s the treatment if the liver enzymes are elevated despite me taking Tenofovir every day? Sorry, but I’m tired of taking the medication AND still having to go for the tests, especially when there might not be any specific treatment for any issues that the tests might show. I had an appointment for ultrasound and blood tests today and I didn’t go because I was too nervous. And I’m seriously considering not going for any tests any more unless I develop serious symptoms (e.g. jaundice). For me, the psychological impact of this virus is much worse than the physical. It’s bad enough that there is no cure but expecting people to go for tests for the rest of their lives even though they’re feeling fine is just too much. From now on, I think I’ll just take the medication and take my chances after that.

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I empathize with you. These tests helps identify liver cancer, fatty liver or cirrhosis or inflammation etc. We have people on here who went a few years without being under any care and developed late stage liver cancer and severe cirrhosis. While understand as a fellow patient the psychological effects, that is not worse than getting cirrhosis, liver failure or cancer. While I respect your decision I recommend that you give it a deep thought and have a conversation with your provider about possibly limiting your test frequency.

Care such as medication, surgery etc. The earliest something is caught the better the prognosis. It is also worth noting that in some patients by the time they show any symptoms it’s too late for any intervention. I understand and share your frustration. Best, Bansah1 .

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But are things such as liver cancer, fatty liver or cirrhosis or inflammation curable or treatable? And were those people you mentioned taking antivirals or not? Like I said, I am taking anti-viral medication.

HI’m @Barry

Yes it is frustrating, concerning and time consuming But … we are quite lucky to have this technology. Our disease is known as the silent killer because there are no symptoms until it’s too late…a painful death from what I’ve heard.
I’m not a medical expert. Forty years of lived experience. Twice a year blood tests and ultrasound. In the past I had to travel 450kms one way to have these tests. Thankfully they have changed the that and am now able to see a general doctor.
Yes it is stressful and worrying. Most times I have a mini break down, after I get my results :joy: think I’m getting liver cancer. As others on this forum can verify. And have helped me understand my results are not as bad as I thought.
May I ask why you are going three to four times a year? Most of us only have two a year.
That would be annoying.
Thanks for sharing Barry.

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@Barry Ill leave that question to the experts.
Good question.
My knowledge is there is a percentage who still get sick even on medication. And once there it’s not that curable. Long, debilitating, painful process that you might not win.
Remember I’m not an expert. Wait for them to respond. They shouldn’t be long. :blush:
@Bansah1 @ThomasTu @ScienceExperts @HealthExperts

Hi @Barry

I completely understand your frustration because we are in the same situation. I agree that blood tests and other test results can lead to psychological impact and high levels of anxiety, something I still experience even though I’m a healthcare worker in the hepatitis sector.

In the Australian healthcare system, we are advised not to rely solely on symptoms, as hepatitis is known as a silent killer and symptoms often appear at a very late stage. Also, hepatitis B symptoms are similar to those of other health conditions; for example, issues with the pancreas can also cause jaundice. Blood tests are not only for checking your viral load but also for monitoring other conditions and organs associated with the liver, such as the kidneys. Tenofovir and other medications only help to control the viral load but do not prevent fatty liver disease.

We respect your decision to only take medication, but we recommend consulting with your specialist or someone with expertise who can provide you with helpful and reliable information. The psychological impact is significant, but cirrhosis and liver cancer severely impact your life more.

All the best.

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Yes, they can be if caught early and treated or managed well leading to a better prognosis. Taking antivirals doesn’t guarantee that we would never develop such conditions. It reduces our risk but not completely at zero. Anyone taking antivirals is monitored with blood work and ultrasound a number of times each year. So you are not the only one having to do these tests. This virus can change without any warnings hence the monitoring with these tests. A little context, we are speaking to you as fellow patients who do these tests as well maybe a little longer than you have. And we do understand your frustration but not doing any tests can be risky. Thanks, Bansah1.

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Thanks to everyone for the replies. I’m just so terrified of getting bad news (like I did when I was diagnosed in December 2020) that it has sort of out me off all sorts of further testing. In addition, I have been experiencing some pain/discomfort in the liver area in recent months, which further increases my anxiety regarding ultrasound and blood tests. I’ll have to think about it. You all have put forward some convincing arguments in favour of going for the tests, but anxiety is such a powerful emotion.

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Is compulsory for hepatitis b patient to do ultrasound and lab test, once yearly, this will help determine if there is any upcoming liver damage , when detected earlier and treated is :100: safe…

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Hi @Barry,
As a patient myself I understand that feeling and anxiety surrounding what could be found. It is a valid concern and I empathize with you. Having HBV can sometimes make you feel hopeless, fearful and anxious. You are not alone feeling this way. We all do when our next tests or appointment is getting closer or waiting for the results. But we have to try and take it one day at a time. This is part of the process to reach acceptance. I equate it to the grieving process. It took me 3 years to get to that place where I was able to accept my diagnosis and stopped fighting it. I hope your time of acceptance and being at peace about your diagnosis comes soon.

Please remember to breathe, smile when you can, and remain hopeful. Not easy to do but we have to remember to live. If there is anything we can do to help, please don’t hesitate to let us know. That is the purpose of this community. I wish I had a magic wand that can make all those feelings go away, I would have done that for you right now. Hang in there my friend as best as you can. We shall overcome all these HBV issues one day soon. Best, Bansah1.

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Hi @Caraline,
Initially when I started treatment my care plan was similar to @Barry for about 2 years where I did labs every 3 months. But once everything remained stable, it was adjusted to every 6 months. At least that is how my care was when I started treatment. Every provider or facility has their own standard of care plan (s)I believe. It’s been awhile and I hope all is well at your end. Best, Bansah1

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Dear Barry,

Just reiterating what everyone has mentioned here. Any additional causes of liver damage (such as fatty liver or another liver infection) may increase the load on your body and may increase the risk of disease progression. If anything, these blood tests can be an early warning for you to change (e.g. diet change) and prevent liver damage before it is too late and irreversible. That is why these tests are done so regularly, they give you a chance to react. In this context, I hope you can see this (at least in a small part) as an empowering practice, rather than something you are chained to.

Thomas

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Thanks everyone for your replies. I probably will reschedule a new appointment for ultrasound and blood test soon. It’s just that I’m sort of coming to the conclusion that the psychological impact of this virus (I won’t call it a disease, because it hasn’t made me sick yet) is worse than the physical. I’m also struggling with the fact that I more than likely contracted hepatitis B sexually, which adds another dimension of suffering (i.e. shame) to the equation.

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Thanks for the update, Barry. Please keep us in the loop about how it goes.

Sometimes we have to draw a line in the sand and see the past as done and locked in. What matters is what you do now with what cards you hold.

Thomas