Frustrated mum!!

Posted , 4 users are following.

My son was diagnosed two years ago and we're just left to get on with it. No advice from doctor.

Over the years he's had varying degrees of symptoms but when he is having a sever attack his eyes are extremely yellow with this comes symptoms of depression and panic attacks. Has any body experienced any symptoms like this. I have visited the doctors several times and I just get told its A-symptomatic as if we are wasting there time nothing is done to help. Any helpful advice would be most appreciated.

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  • Posted

    Hi Kay. Im 17 and was recently diagnosed with Gilbert syndrome. Yes I have suffered both anxiety and panic attacks because of gilbert syndrome. For me I am afraid of any illnesses and paranoid about catching illnesses as I was in hospital and would not like to go back. The doctors were good with me although like you said they don't really think it's anything serious and won't offer additional help after diagnosis. I think it does take a while to understand this bemusing syndrome and I would give it more research and time. At the moment it's all about conquering the mind, this is what I am trying to do. Even though it is very difficult I am trying to force myself to make mind changes whenever I have a bad bout of gilbert syndrome. Trying to stay positive and recall good things. I am glad I have support from my family and friends too! I hope this has helped some what and I hope everything goes well and that your son manages to cope with this illness. Keep up the research and do your best to support your son (which you clearly are already doing, so well done).

    Thanks,

    Joel

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  • Posted

    Hi

    I'm 23 and was diagnosed with this Gilbert's syndrome also when I was 17, I've never had any panic attacks although I do sometimes feel like I have mood swings and can have anxiety problems, but truthfully I think I only get what the everyday normal person with no problems gets. I do know that my eyes can become very yellow and most of the time my eyes are a little yellow on the bottom and my whites are never fully white. It's been a pain in my a** for years as it really affects my confidence and sometimes just avoid eye contact, there's nothing worse than someone saying 'why are your eyes yellow?'. Unfortunately doctors think it's something that anyone can live with and is not really worth treating, I highly disagree and if they were in the same boat I think they would change their minds! I've heard of tiredness related issues to it, I get tired like anyone else I think, I feel like I can never say really if it's more than others. I'd give anything to just have white eyes, something most people take for granted, but I guess with no treatment what can you do. Ok anyway rant over, I have some advice that over the years I feel has helped me and maybe that's why I don't have many symptoms now.

    Drink lots and lots of water

    Milk thistle helps as it's good for liver function

    Vitamin d tablets, or out in the sun really helps, going on a sunbed, for about 9mins once a week really does help!

    Healthy diet, avoiding greasy foods as much as possible. Don't fast, it makes symptoms worse

    Honey and lemon juice I've also heard works well with symptoms... I've been having it recently to try it

    Lots of exercise

    Maybe green tea too, I drink it a fair bit so not sure if it's been helping but can't go wrong with it!

    Good amount of sleep, whenever I don't get enough I feel like my eyes are more yellow

    Anyway, to be honest my eyes most the time as pretty clear, mainly a cream colour, nothin noticeable and I've been sticking to my routines from the above list for a long time now, my eyes used to be a lot more yellow and skin at times, now I rarely do, just like I said before there is some yellow at bottom of my eyes, maybe just me been vain nowadays wanting perfect looks!

    Hope this helps you!!

    Dan

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  • Posted

    Hi, I know you posted a while ago, and just wondering if you had any recent developments. 

    I am 23, female and have had lots of symptoms like this for 4 years. Fatigue, slight yellowing of the eye, nausea, depression and various other symptoms. 

    I have had so many doctors appoinments i feel im kind of giving up now.

    All blood counts say they are coming back normal and no signs or anything severe, evethough I am still feeling pretty s**t all the time. 

    Yesterday a female doctor actualy said times up and tryed to send me on my way, boy I was not pleased!! They have to stick to a time limit and really don't care tbh.

    Im going back in a few days to get tested for GS. I don't mind if i can't treat it, I would rather know what it is I have to I can research and cure myself. 

    If you read this please reply . Thanks  

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  • Posted

    Ps. What was your son diagnosed with, how old is he and what is his background ie; heavy drinking. Thanks
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