How worried should I be about a consistently high bilirubin count?

October 13, 2024 10:04 PM

Yes, you're not not my doctor, but am asking for some general advice. Throughout my years of blood work results (done every six months), my bilirubin count has been high. I've asked my doctor about this and he says not to worry, I just have a high count, some people just do. This does not ease my general worry abou tthis. How worried should I be?

My most recent result was a 2.4 when the labs range was .3-1.2. That sounds concerning! Yet again the doctor is like, no big deal.

Otherwise these recent blood work results were absolutely fantastic, the best they've ever been! The high bilirubin count has always been high not matter if other results are good are bad. It's the one consistent bad result, so I worry! I'm entering my 50s, male, type 2 diabetic, some history of heart trouble in the fam.

posted by anonymous to Health & Fitness (12 answers total)

I had some health stuff recently and was diagnosed with Gilbert Syndrome, which on googling wasn't as scary as it seems. High bilirubin.
posted by freethefeet at 10:18 PM on October 13 [4 favorites]

Can you talk to your doctor and ask him to explain WHY he's not concerned?
If he suspects Gilbert's syndrome (which is indeed very common and almost entirely a non-issue) he should spell it out as well as discuss the pros and cons of testing for it.

To address your point
It's the one consistent bad result, so I worry!
results that fall outside the reference range are not automatically "bad" - they require interpretation as there might be benign reasons for the higher-than-normal values.
posted by M. at 11:41 PM on October 13 [2 favorites]

I have a lot of blood work done, and a lot of things that fall outside of the normal range. They get flagged on my reports, which I read online and that can be somewhat alarming. It's easy to fixate on these things, but preferable not to. As M. said, results require interpretation by your physician. If you have no other signs of liver disease (pain, swelling, dark coloured urine, jaundice, pale,clay-coloured poop, etc) then it's probably fine. If you do have any of those symptoms, visit your doctor immediately.

Just a note, always make sure you are well-hydrated before having blood work. I've gone in not sufficiently hydrated, and it really affects many of my readings, so I make sure to drink water before testing and avoid caffeinated beverages or sports drinks with electrolytes.
posted by alltomorrowsparties at 1:19 AM on October 14 [1 favorite]

I've always had high bilirubin as well. I asked one doctor why I noticed that was always elevated and they said Gilbert's syndrome and that it's nothing to worry about (though they did not actually do a further test as far as I know). Basically, I think 4 separate doctors now have all ignored this elevated level in my labs. I presume it is nothing to worry about absent other problems, as other commenters said.
posted by unid41 at 3:39 AM on October 14 [1 favorite]

I've been on the high bilirubin, Gilbert's syndrome, "don't worry" boat since 1970. Save your worry for something else.
posted by SemiSalt at 5:00 AM on October 14 [2 favorites]

I have this, though I'm not formally diagnosed, just multiple doctors telling me I probably have Gilbert's due to my blood test results. The most I've been warned about is that it might flare up and give you very mild jaundice and slightly yellow eyes/skin, but it's not really a problem to worry about. It's just one of those annoying genetic things.
posted by fight or flight at 5:18 AM on October 14 [1 favorite]

Gilberts can be further confirmed by testing for "conjugated" vs "unconjugated" bilirubin, to rule out liver problems that may cause high bilirubin. Apparently, Gilberts is actually associated with lower heart attack rates, so if you're also part lf the 5% that have the condition, you might count yourself lucky.
posted by Theiform at 6:49 AM on October 14 [2 favorites]

This is all great advice in general. But I will also say that it turned out that I had a very severe disease that was missed by a number of doctors who didn’t take oddities in bloodwork seriously. So there’s also nothing wrong with advocating for yourself. Doctors are not infallible and they are very busy.
posted by jeszac at 7:42 AM on October 14

> I had a very severe disease that was missed by a number of doctors who didn’t take oddities in bloodwork seriously

This was my experience. I had elevated calcium for many years, but it was only slightly outside of the normal range. Several different doctors told me not to worry about it. I finally became concerned after I did my own research and discovered that high calcium is a symptom of hyperparathyroidism. I insisted that my doctor do a test for elevated parathyroid hormone (apparently, the test is expensive). It came back positive, and I needed surgery to remote a parathyroid adenoma. Meanwhile, the years of high calcium caused me to develop kidney stones, which then caused me a great deal of grief, including three surgeries.

The moral of the story: Don't trust doctors, do your own research, and advocate for yourself.
posted by alex1965 at 8:34 AM on October 14 [3 favorites]

Adding another vote for "could just be Gilberts." I've had an elevated bilirubin for years, and every doctor I've asked about it said something to the effect of, "If that's the only outlier, we're not worried." My GI says that it's just a "fancy diagnosis" that doesn't matter unless other blood values are also out of spec.
posted by writermcwriterson at 9:11 AM on October 14

Another diagnosed-as-having-Gilbert's-years-ago here. Mid-forties now and my blood tests always come back high on just Bilirubin, no doctor has every suggested it's anything to be concerned about. Sounds like you're probably the same. If the rest of your blood work is good then there's no need to worry.
posted by tomsk at 9:58 AM on October 14

I was also diagnosed with Gilbert's about 15 years ago, due to consistently high bilirubin counts on my blood panels. My doctor said, "This is nothing to worry about, but you shouldn't take Tylenol." (Being an anxious rule-follower, I then avoided Tylenol for like 12 years until a close friend, who is an MD, heard this story and was like, "Just don't take more than the directions say, that doctor was a WORRYWART." I now take Tylenol frequently with no ill effect.) I am definitely someone who can get obsessive about my health / test results, but this has caused me zero problems and I never think about it. As others have said, unless you have other obvious liver-related symptoms, chalk this up to a fun physiological quirk and move on!
posted by leftover_scrabble_rack at 4:09 PM on October 14