Advise for daughter

[Mikki01]

Hi concerned mother, daughter was diagnosed with gilbert syndrome 2 years ago, raise biliburn level 25 to 27 up and down. Never jaundice but extreme exhaustion all the time. She rarely drinks and for a 20 year old girl not to beable to go out is sad. However it's not live threatening so we will take it. However I feel like the doctors give no ***** recently she's not felt right after each blood test they tell her to get sleep eat well blar blar, she sleeps soooo much. So on a recent blood test her platelet levels where up, so again they told her to come in 4 weeks for another test. This is what they seem to do just tell her to re test all the time. So she's been back in jan and now she's got low iorn, not anemic but low, platelet levels higher and a Gama of 50 when 40 is the within the normal range. She had flu over Christmas and never drank but did take cold and flu pills. So again they jave told her to come back in 4 weeks for another blood test. As shes 20 I have no hold over the doctors and she seems to think they know what they are going l. Me I'm not too sure, she's never had a scan been referred. So what makes them certain it's gilberts syndrome? Anyone with GS have you ever experienced high gama also ? And high platelet levels not sure if connected or just another issue she has. Also she's vaped from 14 , 😞 can this affect the liver? Who knows its a toxic chemical. Doctors never mentioned it so she's puffed away . Just some advise and stories from and GS sufferers. Also me and my husband don't have it nor does any family member

[Sassy25]

Hi, my daughter is 16 and has GS. She occasionally has a slight yellow tinge to her eyes and some tiredness but otherwise she is fine. She has lost some weight in the last month( (she’s only tiny anyway) she had blood tests last week so gets her results tomorrow. Our doctors are really quite good.

I will follow your story but I’m sure someone on here will be able to give you more information x

Take care x