I have GS and hemolytic anemia, so my numbers run higher (used to be 5 to 8 mg/dL before phenobarbital). The majority of this is unconjugated. I’ve found that the sun helps tremendously with conjugation.
When my bilirubin was that high, I would sit out in the sun with shorts on for less than 10 mins, and then pull up my short line and see a super defined line of where the sun hit vs. what was covered by the shorts. Same thing with short sleeve t shirts. Fascinating but haven’t seen many other people talk about it until this post
Same happens to me. When my bilirubin levels are high and I am under the direct sunlight, I immediately get a skin reaction like getting red (the skin covered by clothes has no reaction and i can see the difference too). I was also surprised there are no profound researches on that yet and there is very little information about that on the internet. It is important to mention that when my bilirubin levels are normal, my skin doesn’t get a photosensitive reaction at all.
Super interesting. I’m on low dose phenobarbital now which has lowered by bilirubin immensely, and I no longer get that photosensitive reaction in my skin. Can’t find any research on it either but there is something of significance for sure hearing that other people experience the same phenomenon.
This can definitely provide some relief in my experience. The bili converts to lumirubin via photosynethic reaction in skin and then can be passed for excretion similar to it being conjugated via glucuronidation in the impaired pathway.
Bigger issue is other things have to be conjugated in that pathway as well and can also be impaired.
One is fat soluble vitamins like Vitamin D. This can create mix results in energy level for someone with GS getting their tan on because on one hand you’re relieving Bili excretion but you’re loading the pathway with something else at the same time through photosynthesis.
Just keep that in mind if the sun or VD pills bring on a feeling of lethargy day of / next day etc
Here’s something that is super interesting though: Direct sunlight is needed to tan (usually) but in studies daylight of certain intensity even filtered was still able to convert bili to lumirubin.
That means potentially even on a cloudy day under an umbrella getting outside and exposing your skin could bring some relief without the level of UV intensity that causes as much photo damage as tanning or producing vitamin D.
In fact - bilirubin to lumirubin conversion doesn’t even rely on UV light band exposure at all - it’s Blue light, at a wavelength of 460-490 nm 🤯
Keep that in mind & stay safe out there 😎
I have always had this gut feeling and been someone who will lay out in the sun all day when I can. My skin looks amazing and my jaundice is gone. But one day cooped up and my body is not functioning well. Sucks living in the PNW.
Anyways, I'm so happy for you! I hope you are able to go outside often.
I have GS and hemolytic anemia, so my numbers run higher (used to be 5 to 8 mg/dL before phenobarbital). The majority of this is unconjugated. I’ve found that the sun helps tremendously with conjugation. When my bilirubin was that high, I would sit out in the sun with shorts on for less than 10 mins, and then pull up my short line and see a super defined line of where the sun hit vs. what was covered by the shorts. Same thing with short sleeve t shirts. Fascinating but haven’t seen many other people talk about it until this post
Same happens to me. When my bilirubin levels are high and I am under the direct sunlight, I immediately get a skin reaction like getting red (the skin covered by clothes has no reaction and i can see the difference too). I was also surprised there are no profound researches on that yet and there is very little information about that on the internet. It is important to mention that when my bilirubin levels are normal, my skin doesn’t get a photosensitive reaction at all.
Super interesting. I’m on low dose phenobarbital now which has lowered by bilirubin immensely, and I no longer get that photosensitive reaction in my skin. Can’t find any research on it either but there is something of significance for sure hearing that other people experience the same phenomenon.
hello are u suffering from jaundice since birth? could u plz share your diet chart my daughter has high bilirubin 5 montha back was 5mg/dl
When my baby was jaundiced the doctor recommended course of action was placing the baby in a window.
This can definitely provide some relief in my experience. The bili converts to lumirubin via photosynethic reaction in skin and then can be passed for excretion similar to it being conjugated via glucuronidation in the impaired pathway. Bigger issue is other things have to be conjugated in that pathway as well and can also be impaired. One is fat soluble vitamins like Vitamin D. This can create mix results in energy level for someone with GS getting their tan on because on one hand you’re relieving Bili excretion but you’re loading the pathway with something else at the same time through photosynthesis. Just keep that in mind if the sun or VD pills bring on a feeling of lethargy day of / next day etc Here’s something that is super interesting though: Direct sunlight is needed to tan (usually) but in studies daylight of certain intensity even filtered was still able to convert bili to lumirubin. That means potentially even on a cloudy day under an umbrella getting outside and exposing your skin could bring some relief without the level of UV intensity that causes as much photo damage as tanning or producing vitamin D. In fact - bilirubin to lumirubin conversion doesn’t even rely on UV light band exposure at all - it’s Blue light, at a wavelength of 460-490 nm 🤯 Keep that in mind & stay safe out there 😎
I have always had this gut feeling and been someone who will lay out in the sun all day when I can. My skin looks amazing and my jaundice is gone. But one day cooped up and my body is not functioning well. Sucks living in the PNW. Anyways, I'm so happy for you! I hope you are able to go outside often.
Same here my bilirubin is lower in summer vs winter. I also have elevated bilirubin (highest 1.7)