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Diagnosed with Gilbert's, but I have slightly elevated direct bilirubin levels.

Posted , 10 users are following.

Herdo
Herdo

Hello. 31 year old male here, looking for some feedback. I have pretty severe anxiety, (namely, health anxiety) so I'm kinda freaking out.

I took a blood test 4 1/2 years ago that showed bilirubin levels of 2.0 when the normal range was up to 1.2. All other tests came back normal. I ended up getting an ultrasound which showed nothing abnormal, and my doctor at the time said my "levels are just naturally high", and she didn't seem overly concerned . I was 26 then.

A few weeks ago I went to a new doctor for something unrelated and we did a routine blood test. Everything was completely normal except my total bilirubin again, this time at 2.5 although their normal range now is anything under 2.0. This time, he suggested another blood test to differentiate indirect vs direct bilirubin. He wasn't even concerned about it until I messaged him later asking if there is anything I should be concerned about and he offered to order that test. We had talked about it in his office previously and he wasn't really concerned at all. That was Friday and I just received the results.

Direct bilirubin is 0.7 - normal is 0.5 or less.

Total bilirubin dropped to 2.1 - normal is 2.0 or less.

So at this point in freaking out because he had mentioned Gilbert's and we already kinda figured that's what was causing this, but then I saw the increased direct levels.

Not long after, my doctor messaged me saying that since my bilirubin is mostly unconjugated, it's most likely Gilbert's like he had suggested. He said the next step would be a liver biopsy to figure out exactly what it is, but because all my other liver tests were normal, he's not concerned and doesn't think that's necessary if I'm asymptomatic.

Now I'm confused. From what I've read, Gilbert's would raise indirect bilirubin, not direct bilirubin. My doctor doesn't seem to be concerned with the slightly elevated levels, but if my direct levels were normal, I'd be well within the normal range for total bilirubin to begin with.

I found several of those "ask a doctor websites" with people asking similar questions, even with very similar test results, and none of the doctors seem concerned if the other tests are normal. This is leading me to believe a slightly elevated level isn't really indicative of anything. From what I've read, they're looking for like 50% or more of your total bilirubin to be direct if there was a problem. Mine is 33%. Also, if I just took the normal total bilirubin test today, it would hardly be considered abnormal.

Like I said, I have severe health anxiety so I'm trying to stay calm. My rational brain is telling me it's been elevated for over 4 1/2 years, if it was something serious I'd probably know by know, haha. I'm hoping others can reassure me. Has anyone here had slightly elevated direct bilirubin before?

Thanks for taking the time to read this.

EDIT: After looking into it more, it seems like a slightly elevated direct bilirubin isn't too concerning. I guess they're looking for like 2.0 levels of direct bilirubin is what would be concerning.

0 likes, 10 replies

10 Replies

  • kikoi
    kikoi Herdo

    Edited

    I don't think you really need to worry. I was diagnosed with Gilbert's Disease at the Mayo clinic in my early 20's and they said I was just born with it and it was not anything that needed treatment,I am 52 and I have 4 children and a normal life. I had to have my gallbladder out due to gall stones about 15 years ago. Any health issues that I've had throughout the years were totally unrelated to Gilberts and every doctor dismisses it when my bilirubin count is high.

    • Herdo
      Herdo kikoi

      Posted

      Thank you kikoi!

      I'm not too worried about the Gilbert's syndrome, I guess I'm worried that I'm being misdiagnosed.

      I know I should trust my doctor, but the slightly elevated direct bilirubin makes me nervous. Like I said, he doesn't seem concerned about it at all, I was just wondering what other people's direct bilirubin levels were.

      I found one other post on here from someone whose direct bilirubin is 40% of total bilirubin.

  • Hector78249
    Hector78249 Herdo

    Edited

    I have gone through a similar experience reference my liver and higher bilirubin levels, especially after being diagnosed with a fatty liver.

    I am not a medical provider, but please note the following without me having to go into details in what I went through:

    *Depending on symptoms on how you physically feel and results of other blood tests, the higher bilirubin levels can be an indication of Gilbert's syndrome. Certain people through diet and excessive weight can build fat on their liver. Others, according to my medical provider, can have fat on their livers due to their personal background. In my case, my bilirubin levels last year were about 0.4-5 above standard range. When I saw my blood tests from 15-20 years ago, there were times when my bilirubin levels were about 0.4 above standard range. A good sign for me.

    *Rather than a biopsy, suggest you have a liver fibrous scan if you have not already had one done. I had this done and the results were fine: I did not have fibrous tissue, but only some fat on my liver. This can be controlled by eating healthy, losing weight, i.e., stay away from too much fats, sugar, sodium, etc. Discuss this matter with your medical provider. Fibrous tissue in your liver can be a problem that can lead to cirrohosis. In my case, the doctor that reviewed my liver fibrous scan also indicated that I most likely had Gilbert's syndrome. Only a biopsy could determine if I had fibrous tissue on my liver. The doctor said I did not need to have a biopsy.

    Hope the above information helps you. Your doctor who said your bilirubin levels are most likely naturally high could be correct and you may be one of those individuals who has Gilbert's syndrome. Continue to discuss your health with your medical provider to determine what is best for you. In addition to my medical providers, I personally have a lot of faith in GOD Almighty.⛪

    Wish you the best Herdo.

  • Leeds6
    Leeds6 Herdo

    Posted

    Hi,

    I have to agree with Kikoi.

    I was diagnosed late but realise that I have had this all my life. (>>70).

    Its a really annoying condition which can yoyo but if you read all the stuff on livers etc, you can find out what works for you.

    But the worst thing for me and others, is STRESS! That can really set me off!!

    And cinnamon! Haha. I cant have cinnamon on my rice pudding!

    Good luck!

  • clement18269
    clement18269 Herdo

    Edited

    I was told when I was 17 that I had Gilberts Disease my levels then were 78+when it should have been under 21. Today I just got the results of my blood test and it is currently 48. When I was younger my levels would have increased if I had an infection or was doing a lot of physical work or was stressed. I will be 73 in may and have suffered from depression and I am on antidepressants for about 20 years and Iam enjoying my life . My advice to you is forget about Gilberts and enjoy your life , you will die with Gilberts not from it. Don't spoil your life by worrying, Clem

    • jessica10670
      jessica10670 clement18269

      Posted

      did you ever have a finding of heterogenous or mild coarse exhotexture as well as a hemangioma ?

  • jessica10670
    jessica10670 Herdo

    Posted

    I have also been told i have Gilberts but my ultrasound has now found a hemangioma and a heterogenous texture of the liver . my direct is also slightly elevated

    • Herdo
      Herdo jessica10670

      Posted

      I have not, but the good news is that a hemangioma is benign growth. The heterogeneous texture of the liver is referring to the hemangioma I would assume. All that means is there's an abnormal area found. It could be the hemangioma or a fatty liver, which is also really common.

      I'm not a doctor, but it doesn't sound like you have anything to worry about.

  • bflare78
    bflare78 Herdo

    Posted

    Hi there. Did you ever get to the bottom of this? I have similar results to yours where the percentage of direct Bilirubin is 28% & above normal limit. However, I have other issues going on which I am being investigated for.

  • Copper-enjoyer
    Copper-enjoyer Herdo

    Posted

    You should know that your anxiety is caused by high bilirubin levels. Bilirubin is toxic for nervous system and it really holds you back in term of nervous system performance. It will get worse with age, because constant intoxication will lead to irreversible brain alterations. You need to focus on lowering your bilirubin. And in no way you should do invasive diagnostic procedures because they cant solve your problems but only increase your anxiety. Even if you have some kind of tumour in liver - doctor only can prescribe some toxic substance to kill it or invasive procedure. Neither is good for you. I advise you to do blood analysis on all vitamins and metals. If you have deficiencies - correct them. Focus on copper, because it lowers bilirubin and detoxes a body. Dont forget magnesium if you drink a lot of plain water

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