Gilbert's Syndrome

[hertford21]

Does anybody have any experience dealing with Gilbert's Syndrome?

I have never really heard of it until now but have high Bilirubin levels with no other signs of liver disease.

Any help/tips would be much appreciated.

I have felt fatigue for the last couple of years now and notice things get worst if I work out at the gym or over do sports in general.

A lot of days I feel a kind of brain fog and also have some joint pain especially in my knees and ankles.

Regards

J

[AyrshireK]

Hi J, if you've not already seen it then the British Liver Trust has a page dedicated to Gilbert's Syndrome at:- britishlivertrust.org.uk/in...

No doubt some of our other members with GS will be along at some point to share their experience and offer support.

Katie

[hertford21 in reply to AyrshireK]

Thanks for that!

I have had a read through and a lot of it makes sense.

Any ideas on how you go about being diagnosed initially? Should my GP send me for further blood tests?

J

[AyrshireK in reply to hertford21]

How is Gilbert’s Syndrome diagnosed?

Gilbert’s Syndrome is often diagnosed in your late teens and early twenties. In most cases doctors should be able to establish diagnosis on the basis of liver blood tests and jaundice, if you have it.

Liver blood tests

Sometimes – but rarely – a blood test is taken before and after a 48 hour diet in which you are required to reduce your calorie intake. In people with GS a significant increase in their bilirubin levels is usually seen to follow this.

Liver blood tests are used to indicate whether your liver is inflamed (hepatitis), damaged or not working properly. They measure levels of certain enzyme and protein substances in your blood that may alter when liver damage is present.

Liver blood tests also measure the amount of bilirubin to gain an indication of your liver’s ability to metabolise and secrete it into bile. The ‘serum bilirubin test’ is considered to provide a very accurate picture of how well the liver is functioning.

Raised and heavily unconjugated bilirubin in your blood is abnormal. When this is the only abnormal result, it is seen as a strong indication that you may have GS. Bilirubin levels can, however, fluctuate in GS and it is possible that they can be within the normal range over a period of time.

Bilirubin is measured in micromoles per litre (umol/L).

I believe there is a genetic test for Gilbert's Syndrome since it's an issue with a faulty gene.

No personal experience other than working with a guy who had it and his was totally benign, he was fit and active with no symptoms whatsoever.

[Hidden]

Hi hertford21, if you put a search in for Gilbert’s syndrome hopefully you will find other posts on it. I put one in 10 months ago. When I found a FB page that helped me feel validation for my challenges and worry less (as in tiredness and digestive issues particularly) as GPS have always dismissed my own perceived link particularly with digestive issues and tiredness to Gilbert’s- saying it is harmless and symptom less. I didn’t find out I had it until in my late 40’s at earliest. Would have really helped me to know what I found out in much later life.

[hertford21 in reply to Hidden]

Hi there and thanks for the reply.

Yes I am also 40 and until the other day had never even heard of Gilberts. I found out last night that my fathers brother has it so it must probably run in the family.

Did either of your parents have it also?

From reading up on it I must say I lived the complete opposite lifestyle as I should when I was younger. I drank alcohol, had late nights and never really ate well throughout childhood and adulthood.

A few years ago I cut right down on my calorific intake and started to do weight training at the gym. After a few months I noticed that I was feeling worst and worst. The more working out I did the worst I felt. Anxiety got worst and over a period of time I felt pretty lifeless and depressed even though I was doing a lot of things that I felt should have had a positive impact for me.

For the last 18 months or so I have struggled with anxiety and take CBD oil daily to try and help combat that.

I had my covid vaccine and then had an antibody test done which was totally negative. No antibodies at all. I then had a blood test done and had high bilirubin which I also had back in September 2019.

Looking up some of the issues with Gilberts I feel it has had a massive impact on my entire life. I had panic attacks as a child and left jobs due to that and developed addiction problems in young adulthood.

I have never really felt at ease within myself and have never been able to cope well under stress. I crave an easy life and never seem to get what I crave.

What have you done to help since being diagnosed? Have you implemented lifestyle changes? Have they worked well for you personally?

Regards

John

[Hidden in reply to hertford21]

Hi John, sounds like you’ve tried so hard to help yourself, and been a uphill struggle. I know how disheartening it can be when attempting to help self and actually feel worse exercise wise, I learnt that I need to pace myself and be kind to self even if nobody else understood. I enjoy nature and so tend to walk, garden and cycle to keep as fit. I count my many blessings that I can do what I can, ( although not every day or part of day!)

As far as I know no one else in my family has inherited the gene, but not been able to find out much due to a very scattered and sad family story which I won’t go into, .. except to say I didn’t get fed well as a child, found I couldn’t hold alcohol well as a teenager and didn’t like being unwell so basically didn’t drink much. I had been put off alcohol anyway by experiencing misuse by adults unable to care for selves let alone me. As I had my own children to care for from age of 25 I was determined to be a good parent to them and trained in some complementary healthcare, I had a background knowledge in health care having worked as a qualified dental nurse before I had children. I learnt massage and aromatherapy and got psychological support for myself (which was particularly hard back then). This led to learning a lot from other practitioners such as herbal, Reiki Reflexology, Shiatsu, acupuncture etc. I was also encouraged to learn yoga and meditation. I was judged as being a bit odd as back then complementary/ alternative was not as accepted as it seems to be now, often labelled ‘quackery’.

So yes lifestyle has been a big part of managing my challenges in life, and very worthwhile. I do know depression, anxiety and despair.

I learnt a lot before I knew about Gilbert’s. It was having my gall bladder removed at a particularly stressful time in life that led me to see a nutritionist and she gave advice such as small frequent meals, and some supplements to take, along with food intolerance. I’ve never been overweight. Gall stones are very common in Gilbert’s due to the high bilirubin.

This might sound a bit overwhelming on the self care, it hasn’t been an easy journey. I suggest getting support for those cravings (such as a good counsellor) very understandable and think it’s normal to crave an easy life. The more people talk and be honest, the more I’ve learnt that there is no such thing. Internet is a great thing for learning from that wasn’t so available as it is now, but can be too much, or incorrect too.

I suggest looking at FB page life with Gilbert’s, lots of common and differing experiences. Remember we are all different ( thank goodness) and no one thing suits everybody. Hope that helps.

Wishing you the best on rest of your journey in life.

[hertford21 in reply to Hidden]

Wow thanks for sharing that.

I got a lot from it.

What sort of supplements would you recommend?

I currently take a multivitamin along with CBD oil but not sure what I should adjust factoring in GS.

Thanks again

John