1. Community
  2. Liver and gallbladder
  3. Gilberts Syndrome

Hot Head, Itching, Diarrhea and Fatigue

Posted , 4 users are following.

birddream
birddream

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.

0 likes, 4 replies

4 Replies

  • Gill_Bird
    Gill_Bird

    Posted

    I'm always a bit groggy in the morning. I would wonder if maybe you are allergic to your shampoo / conditioner? as we cannot handle toxic substances, the best is to avoid them, including chemicals in soap and drugs. My favorite hair products are Giovanni (no SLS). I don't take any drugs, not even painkillers other than herbal remedies arnica and willowbark. I'm even wary of too many vitamins, though I seem to need some. I'm starting to wonder if the reason my Gilbert's symptoms are worse generally this year is due to all the supplements I've been taking. Either that or premenopausal (though I'm only 41)
  • Gill_Bird
    Gill_Bird

    Posted

    I mean, because of different hormones in my body, due to premenopause, my gilbert's could be flaring up. I mention it only because some things I read said hormones of puberty cause people to notice gilbert's.
  • Love7797
    Love7797 birddream

    Posted

    I go through burning inside of my head and it hits my neck,ears,arms,and stomach I had it😢

  • Steph0917
    Steph0917 birddream

    Posted

    I am also at 1.9 and I experience a lot of the same symptoms. I am anxious by nature but would not say I have anxiety. I do have all the other things you mentioned. I am happy to see this forum because it makes me feel less crazy since so much info says "excellent" prognosis and no treatment needed. I am going on a journey to make some diatery changes. I was SO deathly ill the entire time I was pregnant with my daughter, I felt like I had to have something major like justational diabeties, but I was told I was fine. After she was born and I breast fed for a few days she was back in the hospital for 5 days and with such bad jandice that she nearly needed a blood transfusion. It all makes sense now, as I have started putting the peices of my medical history together. When I look in the mirror I am always what I describe as "translucent" in color, fatigue, struggle with the word I want to say a lot, general brain fog, nausea nearly every morning after 10+ hours of not eating, hands and feet always cold and head often hot (I'm prone to migraines too), etc., etc. I have hope things can improve now that I have answers.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.