Any advice Please.

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Hi all, I’m looking for some advice really regarding Gilbert Syndrome.

Dr think I have got Gilbert’s as my Bilirubin fluctuates a lot & other Liver function test all ok.

Found out last August time when I had to have blood tests every couple of months due to being on Isotretoin for my acne.

Well since April this year I’ve suffered from Health Anxiety & had numerous blood tests etc which thank goodness all satisfactory. But My last 2 blood tests show high Bilirubin at 47. My eyes a slightly yellow & have been for over a month now. I’m having bowel issues also.But have had my stools also tested numerous of times. Maybe IBS? I don’t know.

Anyway Drs. Haven’t really explained much to me about Gilbert’s apart from it’s nothing to worry about. Well hello health anxiety sufferer here. Of course I’m going to worry. I’ve done a little research & come across things like special diets etc.. I eat pretty healthy, I’ve binged in my time tbh but only once a week twice at a push. Started drinking young. Yes I do smoke which I know is bad. I did pack up for a month But started  again after this health anxiety business, which I know doesn’t makes sense  cuz I do worry about the affects etc... but couldn’t cope with the withdrawal symptoms aswell as the anxiety symptoms. I’ve cut down loads & that is my aim again to pack up once I’ve got this anxiety sorted, as I’m in two minds is it anxiety or is something else!😫 Last time I had a drink was about 3 weeks ago when I went for a meal with my partner (we went to an Indian restaurant)(3x beers & 1x Wkd) took advantage of feeling better. But repaid for it the following morning of mushy stools, which I still have now.

It’s really making me paranoid & anxious with the Bilirubin levels high & yellow eyes( slightly tinged at the bottom & in corners).

I don’t know enough about this condition & if actually there can be any dangers from it. Or have the Drs. Got mixed up for another condition?

Why is it that only since this Health Anxiety that things are going wrong? Surely Anxiety can’t cause Bilirubin levels to rise? Keep thinking it’s something bad?? I’ve had 2 ultrasound on abdomen area also came back normal. But what if I have a blockage somewhere they can’t see?  The pancreas, bile ducts & liver?

Please any advice about it would be very much appreciated.

I want to trust my Drs but what I’ve researched not a lot of people know much about it, so I really don’t know 🤷🏻???😫. Take Care x

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  • Posted

    Nobody knows much about it, unless you see a specialist. If I go to a walk-in, the doctors ask me what it is. Only a couple of times I have had doctors know about it but they push me to see a specialist. I have been waiting 9 months for a specialist but my appointment is on Monday! 

    Through my research and personal experience you must stop drinking. I quit drinking about a year and a half ago (500 days on Monday!) and although I don’t throw up for endless hours I still have issues with Gilbert’s.

    I now focus a lot on healthy eating and exercise. I have learned it is about balance. Don’t skip a meal and don’t go too hard at the gym but don’t over eat and don’t be lazy.  

    I only have major issues when I take antibiotics (although I just finished a round of antibiotics for my acne and pretty much got them all down! I got sick after one pill but they said it was long enough after taking it (2hours) that my body had absorbed enough of the pill). There are some “liver safe” antibiotics... I would just double check with the pharmacist before receiving any medication that it doesn’t have any reactions with the liver.

    I always wondered if maybe our acne is related to Gilbert’s....

    Other than that, it is anxiety inducing, and a lot of support pages say it’s all in our head... But it is important to listen to your body. I have said on many occasions that Gilbert’s has saved my life. I drank way too much and if I never had the side effects I was having maybe I never would have stopped.

    Gilbert’s will force you to lead a healthy lifestyle and care for yourself more ! 

    Frequent trips to the doctor and blood tests are something I have become used to and at least I know the rest of my health is good when I go! They like the rule everything out !

    Maybe if you haven’t already, get an ultrasound done on your liver and a referral to a specialist ? When I quit drinking they found I had a fatty liver (they found this when I was very fit and healthy and had been off alcohol and drugs for 6months) and I have still yet to find out if it is related to Gilbert’s although probably not xox good luck 

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    • Posted

      Hi Brandiann,  thanks for your reply.

      Why does that happen, you give up a bad habit & get diagnosed with something?  Yes to be honest I definitely don’t want to drink any. 

      You know what I’ve always wondered that with the acne when I found out. I finished my course early due to the anxiety, so was on them for 6 months. Luckily skin has got a lot better than what it was.

      I need to start exercising again as since April I have done basically nothing. The first 2 months I had constant dizziness then followed by other things. I do feel better in myself now, I do feel very unfit mind you and weak. So need to slowly build myself back up.

      I’ve had an ultrasound on my abdomen area kidneys, liver, pelvis,spleen, pancreas and said all ok. 

      Do you think anxiety can cause Bilirubin levels to rise? 

      I will ask about a referral but I doubt they will? I’m going to ask for regular blood tests though to keep an eye on it.

      You should listen to your body. I’ve never had any problems taking meds apart from this bloody ointment I got prescribed that caused this anxiety. Would suffer from hangovers that lasted for days. Used to feel very merry after 3 beers.

      Let me know how you get on Monday. Will be thinking of you x

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    • Posted

      Hey again!! I was diagnosed 9 years ago when I was 16 and hit puberty but the doctors told me not to worry about it so I never thought about it again... until after I quit drinking. I almost forgot I had it and I thought my horrible hangovers were normal... I probably would have noticed it more if I wasn’t drinking .. I used to throw up for 8 hours straight and I just thought it was normal !! 

      You should try a prescription called tactupumps from your doctor, just say a friend with Gilbert’s uses it and has great luck. It’s a cream versus a pill... also I am not sure where you are but I don’t think they can say no to a referral if you ask!!

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    • Posted

      Wow yes extreme hangovers you had. 

      I’m from England, I will ask just thought to be referred something has to be going on, if ya know what I mean. 

      Is that hat cream for Acne?  I tried all antibiotics and creams before never had any success only the isotrettoin. But acne is the last thing on my mind atm.

      Really appreciate all of the advice  given. It does put me at ease. Xx

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  • Posted

    At 47 your bilirubin level is NOT very high..  I have been over 100…   So nothing much to worry about there.

    The good news is that having an elevated bilirubin level protects against heart disease.!  So the risk of any heart attack or stroke is very low.

    And an elevated bilirubin level is  NOT  life threatening OR life limiting..

    I was diagnosed with Gilberts Syndrome 13 years ago, and it has not affected my life.

     

    Now what to do next..??

     

    For some people, including myself, it is possible to REDUCE the bilirubin level by a change in diet.

    Bilirubin comes from the liver, so if you reduce any stress on the liver, that has to be good.

    The liver is the body organ that eliminates food items that the body does not like.  This could be alcohol for example.  In my case it is spices and herbs.  There are medical research papers to support this approach also.

    By removing completely ALL spices and herbs from my diet my bilirubin level dropped from over 100 to 27..  17 being ‘ normal ‘…  The change took a month, but the yellow eyes went, and my digestion was greatly improved, such that I no longer felt that I might have IBS.

     

    OF COURSE, eating well with lots of fresh fruits and vegetables AND plenty of regular exercise will ALWAYS help.  These days BEFORE surgery at some hospitals they send the patients on an exercise course, and it has been proved that the patients recover much faster..

     

    So the usual’s of diet and exercise…  AND try changing your diet.  Try a spice and herb free month and see if it helps.  Easy to do and cheap.!  What have you got to loose.?

     

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    • Posted

      Hi Kweda bloody hell thought mine was high. You have reassured me on that , thank you. Yes I think it was either the spices, onions & beer that set off my loose stools. I’m eating more fresh fruits and vegetables than ever before. Cut right back on processed foods also. I need to start exercising as I haven’t done really anything since April & feel so weak and very unfit. Do you have regular blood tests to keep an eye on Bilirubin levels? Also have you packed up the alcohol? I never had any symptoms before tbh apparently my levels were normal in 2014.. Nothing really changed since then apart from being more content in my life. Maybe the Isotretions didn’t help? But I come off them April when I come down with this anxiety.

      I really appreciate all of your replies & advice. Keep up the good work!😊 TAke Care x

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  • Posted

    Yes I go once a year for a blood test, but mostly I am in and out of the doctor's offices very fast as I am considered healthy..

    IF there is one thing that makes anyone feel better is to spend a few hours in a hospital or doctors office and see how really sick some people are..!!  We might feel a bit bad entering the hospital, but feel better and are very grateful for our relative health when we leave..!!

    You asked about alcohol..  In my case I just have a tin of beer most evenings and perhaps another one on Saturday evenings.  So my alcohol intake is low and does not seem to cause any problems.

    As brandiann also wrote exercise really helps and try going spice free or just playing around with diets to find what is best. Don't expect an overnight change however, it took me a month to see what a spice and herb free diet had on my bilirubin levels.  It takes the liver that time to heal itself and accept the new 'normal'.

    Interestingly the liver is the one organ of the body which DOES heal itself.  Unlike heart, kidneys and my brain.!!!!

     

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    • Posted

      Thank you. Yes I need to get over this anxiety. I feel so selfish at times knowing there’s people out there with diagnosed serious illnesses.??. I never thought like this before, I enjoyed life & thought what will be will be. But mind frame is so different now. I need to tackle this anxiety big time! Should start CBT soon.

      As a Care Assistant for the past 10years on & off I’ve seen & heard a lot. And was never phased. 

      Thank you x

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