Bilirubin levels

So, how do you actually deal with high bilirubin levels?

William Gray3 said:So, how do you actually deal with high bilirubin levels?

I've dealt with elevated bilirubin since I was an infant, stemming from a pretty severe case of newborn jaundice. It has stayed elevated ever since, and frankly, it seems to be just how my body is wired now—something you can't really "fix." All I know for certain is that I have to stay away from things like hormonal contraceptives, steroids, and that sort of thing. That's about as much as I can tell you.

analogskipper272 said:I've dealt with elevated bilirubin since I was an infant, stemming from a pretty severe case of newborn jaundice. It has stayed elevated ever since, and frankly, it seems to be just how my body is wired now—something you can't really "fix." All I know for certain is that I have to stay away from things like hormonal contraceptives, steroids, and that sort of thing. That's about as much as I can tell you.

Does having elevated bilirubin actually mean there's liver damage, and should people with high levels be avoiding alcohol altogether?

High bilirubin doesn't always signal liver damage, but you can easily verify that with a standard blood panel to check your enzyme levels. My liver is perfectly fine; I just have a genetic predisposition for elevated bilirubin. Don't go punishing your liver with alcohol. If you absolutely must, stick to opioids that won't strain the organ.🙂

I was just diagnosed with high bilirubin myself. Back in my teens, I used to drink heavily and honestly thought I was struggling with depression. Turns out, it was just the bilirubin...

William Hernandez26 said:High bilirubin doesn't always signal liver damage, but you can easily verify that with a standard blood panel to check your enzyme levels. My liver is perfectly fine; I just have a genetic predisposition for elevated bilirubin. Don't go punishing your liver with alcohol. If you absolutely must, stick to opioids that won't strain the organ.🙂

I was just diagnosed with high bilirubin myself. Back in my teens, I used to drink heavily and honestly thought I was struggling with depression. Turns out, it was just the bilirubin...

I don't really drink alcohol or use any kind of opioids, honestly, but I was thinking that having high bilirubin might serve as a decent enough excuse when turning down a drink at a happy hour😉—you know, something reasonable without being so weird that people think you're a total freak. You know how it is; nowadays everyone is drinking, and if you don't join in, you're basically an outsider🙄 because people usually assume you're just being stuck-up when you refuse a drink, so they keep pushing and insisting you just need to loosen up a bit. 😳

So, I’ve been dealing with elevated bilirubin levels since the day I was born. Back when I was on birth control, I made sure to get my liver panels done every single year, and everything always came back totally fine—well, aside from that bilirubin issue, obviously. There was this one stretch in my life where I felt absolutely miserable; I mean, I was feeling just terrible, constantly nauseous and whatnot, specifically during that period when doctors actually suspected I might have hepatitis. I went through every single test imaginable—don't even ask me which ones, because I honestly can't remember anymore, but basically whatever my doctor decided was necessary at the time—only for them to conclude that everything was perfectly normal... It’s just the story of my life, I guess. According to all the lab results, I'm supposedly fine, yet I feel absolutely awful...

Raymond Thomas7 said:I don't really drink alcohol or use any kind of opioids, honestly, but I was thinking that having high bilirubin might serve as a decent enough excuse when turning down a drink at a happy hour😉—you know, something reasonable without being so weird that people think you're a total freak. You know how it is; nowadays everyone is drinking, and if you don't join in, you're basically an outsider🙄 because people usually assume you're just being stuck-up when you refuse a drink, so they keep pushing and insisting you just need to loosen up a bit. 😳

😍 😍
"Elevated bilirubin" is my go-to excuse as well. I haven't had the chance to use it yet, but I plan to. 😍

Nice. 😍

That elevated bilirubin is actually a syndrome—I think it's called Gilbert syndrome—and I’m pretty sure there’s already been some chatter about it on this forum.

I’m looking at how high everyone else's levels are... Mine was hovering around 50 a few weeks ago, despite my supposedly "perfect" lifestyle. One has to wonder what would happen if I actually indulged in fast food, soda, or alcohol. In one of those links above, people were even suggesting avoiding Gatorade. Personally, I've noticed it doesn't sit well with me, so I rarely touch the stuff. Now, I'm dealing with chronic throat inflammation, and my doctor dumped a round of antibiotics on me. Am I actually feeling worse from the medication than the original infection? Quite likely.👎 👎

When I had to get bloodwork done because of my birth control prescription, they caught an elevated bilirubin level of 40. Since all my other liver enzymes were perfectly normal, my doctor concluded it was just hyperbilirubinemia—or what’s commonly called Gilbert syndrome. Her advice was pretty standard: try to steer clear of fatty foods and alcohol whenever possible, load up on vegetables, and basically just try not to overtax my liver. By the way, she suggested switching from oral pills to contraceptive patches instead.
There isn't any medication for it; I just have to get my bilirubin levels checked every three months.

Here is my dilemma: I am following the guidelines strictly. I avoid heavy fats, and I've almost entirely cut out alcohol. However, if my meal consists of anything other than soup, salad, dry toast, fruit, or a few different types of vegetables, I feel terrible. I don't eat meat at all, and I can't even touch sweets—no cookies, ice cream, or chocolate. Everything else leaves me feeling nauseous, my stomach hurts for hours after eating, and I am constantly bloated. What am I supposed to eat? I simply cannot live on this restricted diet forever.

William Gray3 said:So, how do you actually deal with high bilirubin levels?

Basically, you find out why it's high and fix that specific issue. 🙂
In newborns, doctors sometimes use blue light therapy to bring those levels down, but that isn't really an option for adults. 🙂

I’ve got this congenital high bilirubin situation going on. Aside from being told that people with this condition tend to struggle more with physical or mental stress, I don't really know much else about it...

On another note, I recently had some tumor markers checked and my AP was elevated. I'm just wondering if anyone knows if there could be any connection between that and the high bilirubin...

thanks

So, a few days ago, I finally decided to go see my doctor because I’ve been dealing with this constant bloating and stomach pain—especially in the mornings—for quite a while now. She prescribed some Nexium, thinking it was just a case of gastritis. I went in for blood work the next day, though I had already taken the medication, so I'm really hoping that didn't mess with my numbers too much. Anyway, my bilirubin came back at 42.8 and my red blood cell count is a little high, but everything else regarding my liver looks totally normal. My doctor referred me to an infectious disease specialist, who then ordered tests for direct and indirect bilirubin along with hepatitis B and C markers. I got the blood drawn today, and I should have the results by Friday. Honestly, I’m pretty freaked out that they even sent me to test for hepatitis; I know deep down there's almost zero chance I actually caught anything, but the anxiety is hitting me hard until those results are in hand. Do you guys think this could just be Gilbert syndrome or something? I'm genuinely stressed about it... 😢

For what it's worth, my face is always bright red, like a bell pepper.

Frank Moore4 said:So, a few days ago, I finally decided to go see my doctor because I’ve been dealing with this constant bloating and stomach pain—especially in the mornings—for quite a while now. She prescribed some Nexium, thinking it was just a case of gastritis. I went in for blood work the next day, though I had already taken the medication, so I'm really hoping that didn't mess with my numbers too much. Anyway, my bilirubin came back at 42.8 and my red blood cell count is a little high, but everything else regarding my liver looks totally normal. My doctor referred me to an infectious disease specialist, who then ordered tests for direct and indirect bilirubin along with hepatitis B and C markers. I got the blood drawn today, and I should have the results by Friday. Honestly, I’m pretty freaked out that they even sent me to test for hepatitis; I know deep down there's almost zero chance I actually caught anything, but the anxiety is hitting me hard until those results are in hand. Do you guys think this could just be Gilbert syndrome or something? I'm genuinely stressed about it... 😢

For what it's worth, my face is always bright red, like a bell pepper.

Hey everyone, I'm genuinely worried here, even if my doctor says there's no reason to panic. What are your thoughts? 😢

If you haven't engaged in any high-risk behaviors, there is likely no cause for concern regarding hepatitis B or C... There are numerous reasons why bilirubin levels might be elevated... It might be wise to undergo a bone marrow biopsy or at least a peripheral blood smear, especially since the results indicate an elevated erythrocyte count.

Look, my bilirubin levels were actually higher than yours at one point. Honestly, I probably waited too long to get my bloodwork done, so I’m not really sure where things stand right now.
When I first found out my bilirubin was spiked, I went full drill sergeant on myself. I cut out alcohol entirely, watched everything I ate, the whole nine yards...
But then, little by little, I started sliding back into my old habits 😬, and let's just say those habits weren't exactly "wellness" approved. That said, I haven't had any issues—no pain, no symptoms, nothing.
Maybe I ought to head back to the doctor and see if everything has leveled out again... 🙂

Sam Hall15 said:If you haven't engaged in any high-risk behaviors, there is likely no cause for concern regarding hepatitis B or C... There are numerous reasons why bilirubin levels might be elevated... It might be wise to undergo a bone marrow biopsy or at least a peripheral blood smear, especially since the results indicate an elevated erythrocyte count.

Yeah, I lead a totally low-key life. I haven't even had blood work done in two and a half years, and I haven't stepped foot in a dentist's office in that same timeframe either.

My red blood cell count is just slightly over the upper limit, and my uric acid is up too.

Frank Moore4 said:Yeah, I lead a totally low-key life. I haven't even had blood work done in two and a half years, and I haven't stepped foot in a dentist's office in that same timeframe either.

My red blood cell count is just slightly over the upper limit, and my uric acid is up too.

Can you drop the actual numbers? Guesswork is just bad advice 🙂 .

William Gray3 said:So, how do you actually deal with high bilirubin levels?

Phenobarbital.

Lawrence Wells said:Phenobarbital.

I'm guessing the thought was that you can use phenobarbital to treat—or rather, bypass—those super specific genetic glitches in how the body handles bilirubin. Basically, you're trying to kickstart the metabolic pathways to process it wherever possible.
But honestly, those kinds of issues are just a tiny slice of the whole pie when it comes to why someone might end up with high bilirubin levels in their blood.