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I'm 37 y.o. I was diagnosed with Gilbert's this Fall after having high total bilirubin (1.9) while everything else was normal. Everyone tells me 1.9 is not high enough such that you would appear jaundiced, but I swear when I look in the mirror I have a yellow tinge, and the skin on my face itches a little. It concerns me that I'm having a lot of symptoms, when doctors assure me it is not a condition that causes any problem or requires any treatment. That makes me feel like something else is wrong with me - something worse, and it's just not diagnosed yet (anyone else worry that they're dying?)
My most problematic symptom is a feeling that the skin on my face/head is burning. My head feels hot when the rest of my body can be cold. If I had the energy to exercise, the discomfort of having a hot head makes me not want to make it worse. This is not the same as flushing - I'm not red in the face, and it's not just in my cheeks. It's a hot/burning feeling from my neck up to my scalp. I don't see anyone talk about this symptom but I hate it.
I have fatigue. I'm groggy in the morning and get drowsy in the afternoon. I also have mild sleep apnea, though, so it's had to know which is caused by what.
I have a fairly chronic upset stomach, and I go to the bathroom more often - sometimes diarrhea, pale-colored (sorry to be gross).
Now I'm also going through a year-long slow taper withdrawal from benzodiazepines (anxiety medication) and this is documented to cause people huge physiological withdrawal symptoms. I cannot find a link between this withdrawal and an onset of GS, but I find it curiously coincidental that this came about at the same time. Maybe the extra anxiety I feel from the lack of meds in my system triggered the Gilbert's to express itself - I dunno. I'd be very happy to hear from other people who experience the same cluster of symptoms I have, and if you do anything that helps. I've been trying milk thistle - but I don't notice any remarkable difference.
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