Driving myself crazy!!

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Hello everyone. First, I've found a lot of the posts here very helpful. Thankful for those of you who have shared your stories. So within the last few months my bilirubin count has been rising. My first test showed the count at 2.4. I went back last week because my eyes had a yellow tinge to them. At that point, my count was at 3.1. The doctor still believes this is Gilbert's, but wants me to see a GI now because I'm experiencing some pain below my right run, and nausea after eating. Needless to say, I'M FREAKING OUT!! I have four kids and I'm thinking they're going to be fatherless by the end of the year. The doctors seem completely clueless to my questions and just seem to write this off as it's no big deal. To me and my health anxiety/panic, it's a huge deal. All of my other liver functions are said to be normal. My blood work is great and all my other functions are good. The only thing is the elevated bilirubin, the jaundice (which has subsided), and the pain with nausea. I'm 38 years old and I'm convinced this is the end. I'm already planning my liver transplant. I've stressed so much, I'm down 30lbs. I know it's kind of funny, but I'm truly losing my head. Anyone experience these things and should I be concerned?

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12 Replies

  • Posted

    Frank I am now coming up on 72 and I was diagnosed as having Gilbert,s syndrome when I was 17 ,I have readings well into the seventies but I don,t know what that is in your money. I get very tired when playing sports and would come home after and sleep a lot , the same also happened when I did heavy manual work . Infections and stress also raised my bilirubin but I am fine otherwise and my health is good , so don,t stress yourself out too much . I have looked for something to get relief from my symptoms ,but to no avail so just get on and enjoy your life . I also used to get a pain in my right side but this turned out to be Gall stones.                             Regards CLEM
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    • Posted

      Hi. 

      One thing still unclear to me is how do people know their readings are up? In my case yes, tiredness, (it comes on in a wave) but when its v bad I get an extreme jetlag type foggy brain and right sided temple headache. Now this headache never really goes but most times its just a low grade ache.

      What do you (my ageish) and others experience?

      Thanks again!

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  • Posted

    Hi. Thanks all again.

    I was late in finding out my prob but now recognise I’ve always had it, variably throughout my life.

    This year has been poor but now having read ALL the stuff I could, I see that the key thing was stress due to wifes illness. It was a v bad time so my diet was off, not drinking enough water, sleep deprived, a few drinks (just a little more than usual), and le voila my readings went up.

    So..advice?

    Read the stuff by others here, see where you are compared to fellow sufferers. Read good liver support books. Visit liver websites, eg british liver site. Follow eating/drinking habits and take any supplements which are recommended.

    I now eat better, esp raw veg at each meal, ok fruit for brek (lettuce for brek ?? Yuk), drink and only filtered water in tea etc, and have milk thistle and vit supllements. Plus, work on my mental health to reduce stress.

    My suggestion means you get yourself  informed and take steps which work for you because as you will see in this site everyone is different. But dont panic! Huh, easy to say isnt it? 

    Good luck!

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  • Posted

    Frank,

    First off, breathe. GS is something that many GP's don't grasp fully. It's not without symptoms. Irritable bowel's are one of the highest reported symptoms of the condition. I personally struggle with it daily. One of the best things you can do to alleviate the symptoms is to eat smaller amounts more frequently. Large meals exasperate the symptoms, but not eating at all will cause your bilirubin to rise.

    I'm willing to bet that you've inadvertently slowed your eating to try and avoid the symptoms, and when your eyes turned yellow you returned to the doctor and found a higher bilirubin count. That's normal, because you weren't eating. Less food = more bilirubin = jaundice symptoms. Small portions, more frequently. You'll feel much better. Also a very high portion of GS patients require more sleep than the average person.

    Some solid advice moving forward is to curb caffeine, nicotene, and alcohol. I'm not saying get rid of anything you don't want to. Live your life to it's fullest. But be aware that they will make symptoms worse. Overall, GS won't hurt you, or kill you.

    And probably the biggest thing of all, GS is a blessing. Bilirubin is a known antioxidant. It protects your heart. Look it up. You are at much lower risk of heart disease, stroke, etc. It's a protector. Like a super power, it has downsides, but you'll be around longer because of it.

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  • Posted

    I was informed 26 years ago of having GS , it never really affected me but I went through periods of panic attacks , lightheadness and gastrity that doctors attributed to stress+anxiety , what I changed was taking a daily multivitamin/minerals supplement and extra Vit D ,reduce alcohol to a minimum , take activated charcoal 3 times a week to detoxify the GI tract ( take 1 hour away from Meds and supplements ) no more coffee , and more exercise.

    I feel a lot better now.

    My Bilirubin is usually 1.8 , but 2.5 on empty stomach.

    You shouldn't even think for a second about liver transplant and dying that's your anxiety speaking.

    Hope it helps

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    • Posted

      The funny thing is, I had a blood test in November of 2017 and my count was 1.0. My doctor says this can still happen with Gilbert's but I've read everywhere that it will always be on the high side. Is it possible to have a normal bilirubin at times?

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    • Posted

      Weird or what? 

      When you say 1.0, what was it before? 

      Mine is 25(?)  and hovers 22-25. I think there are different scales so v confusing!!

      Your question is good, can it be normal by itself? 

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    • Posted

      So I don't have anything to compare to before November 2017. In Nov. 2017 my total bilirubin was 1.0. In June of 2018 it was 2.7 mg/dl. In August of 2018 it was 3.8mg/dl. I have upper abdomen pain that goes into my back as well. I'm so afraid I have pancreatic cancer or a failing liver.

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    • Posted

      Hi Leeds , you are probably right about the different scales/numbers , my # are US , yours are UK right ?

      I'm not sure the Bilirubin can be normal occasionally ,my tests since 1993 show it always a little high.

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    • Posted

      The numbers I suppose are relative. I think that my 25 equals 2.5 on your richter scale. Your 3.8 sounds high (esp compared to 1.0) and with your pain in your back/abdomen it must be worrying for you.

      I think with GS, people do have these pains though so dont panic yet! Hope youre getting good medical advice! 

      You cant help wondering what caused 1 to go to 3.8 though! Stupid condition to have isnt it? 

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    • Posted

      Hi! Yup UK ici! But GS is international! (Grrrr!)

      I think I have worked out that your 1.8 is my 18 etc.  

      I have also worked out never to have an empty stomach! 

      I dont think my body can fix itself (my readings I just found were the same 20 years ago!) so I am finding what works for me to keep me stable. All down to diet etc!  

      The thing I hate is the “jetlag” feeling. Thats how I know Im “off”! 

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  • Posted

    hey just seeing how you are managing your GS. I was recently diagnosed and have upper right stomach pain, mild jaundice of the eyes and fatigue.

    hope all is well!

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