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General health

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Original poster

Diagnosed with Gilbert's syndrome

23 replies

OnlyGodKnowsWhy · 04/09/2017 17:49

I have looked it and see it's relatively harmless, however I was curious about the NHS listed other symptoms, such as nausea, shakiness, fatigue and trouble concentrating or brain fog.

Does anyone else have this and if so, have you noticed any ways it's affected you? Any triggers?

OP posts:

Achangeisadgoodasarest · 04/09/2017 17:59

Ooh I have Gilbert's! Don't know anyone else with it. Not sure about any symptoms to be honest, as I also have a much more serious blood / bone marrow disorder, so can't tell what causes what if you see what I mean.

Be warned that my gp diagnosed 'just Gilbert's, nothing to worry about' 6 months before being diagnosed with the other, seriously rare life threatening disease. So if you get progressively worse, please go back for more tests.

What is your bilirubin level? What symptoms did you present with?

Original poster

OnlyGodKnowsWhy · 04/09/2017 18:09

It was 31? I came back off a holiday and that same night got unwell. Loose bowels for ten days, anxiety, nausea, fatigue. Did my bloods and found slight increase in bilirubin. This is a repeat a month on.

I'd been progressively tired for a few months before, falling asleep in afternoons and nausea on and off.

OP posts:

Achangeisadgoodasarest · 04/09/2017 18:18

Mine is always around 70, my haemoglobin is low too though, is yours ok? I had fatigue and nausea and shortness of breath when it was just the bilirubin that was high though, when Gilbert's was diagnosed. 6 months later a bout of noro left me very jaundiced and severely anaemic.

Are they testing for anything else? If you are symptomatic then they need to keep digging for the cause, Gilbert's is usually harmless.

I hope you start feeling better soon

Achangeisadgoodasarest · 04/09/2017 18:19

Oh try googling 'liver diet' there is lots of info on what not to do, to help your liver to function better. I tried milk thistle at one point too, didn't seem to have any effect though.

Original poster

OnlyGodKnowsWhy · 04/09/2017 18:22

All my other results are fine and they did a full liver function so the doctor seems pretty certain it's GS.

I'm not symptomatic now, they do think I had a virus and that triggered GS flare. I actually ended up having a relapse with depression and am now on antidepressants, I'm feeling much better, thanks

OP posts:

Jojoanna · 04/09/2017 18:23

I have Gilbert's ! Only came to light when I was unwell and had a blood test

Allwashedup · 04/09/2017 18:23

I have it too. Diagnosed in 2005 and only a few percent away from being a Hepatitis diagnosis. My symptoms were fever, nausea, slightly yellow tinged eyes, general flu like illness. It was only because the excellent GP ordered a blood test and noticed high bilirubin that it was diagnosed.

Original poster

OnlyGodKnowsWhy · 04/09/2017 18:24

Have you noticed any symptoms with it?

OP posts:

Original poster

OnlyGodKnowsWhy · 04/09/2017 18:25

Ah, I read on nhs that menstruation can cause GS flare. Every month I get flu like, high temp and tired. I have a diagnosis of PMDD that I thought was to blame but now I am wondering if it could be GS.

OP posts:

Allwashedup · 04/09/2017 18:46

More noticeable when I'm tired or have eaten unhealthy foods. And white wine really doesn't agree with me.

Original poster

OnlyGodKnowsWhy · 04/09/2017 21:53

I gave up alcohol about six weeks ago. I'd finally had enough of being hungover for at least two days and another day or so to feel totally okay. After a bottle of wine tops.

I've had a look at the liver diet, seems similar to paleo which I did at the start of the year. I think I will see how I go for a bit.

OP posts:

QuentinSummers · 04/09/2017 21:58

I have it too, I get yellow eyes and feel absolutely knackered with it every now and then (I know its GS as ive been to GP multiple times for tiredness and my bilirubin is very high compared to my normal just high) I'm a bit more careful about things like paracetamol as GS means liver enzymes aren't all present as they should be so harder work to process stuff.

I think it can be symptomatic but it's not treatable and not an illness so the Drs aren't very interested in it. That's my experience anyway.

NK346f2849X127d8bca260 · 04/09/2017 22:45

My DH and two of our son's have Gilbert's,
doesn't bother DH and eldest son but youngest goes quite yellow and suffers exhaustion with it.

sm40 · 04/09/2017 22:54

Oh!! Welcome to the club. Only found out when my dh told me I was yellow and should see doctors!! Turns out bilirubin levels are 80 or so. Went to see private liver man and no other issues so just told I might get jaundiced when poorly! Usually get comments on my sun tan!!
No other major symptoms reallly however do get panicky when I get tummy pains/indigestion in vas

sm40 · 04/09/2017 22:54

Sorry decided to post!!

In case it's anything serious and related!

Sbzion · 22/06/2021 22:32

Does anyone notice sore aching legs white Gilbert’s

Thisusedtobeaniceneighbourhood · 22/06/2021 22:37

My DH has Gilbert’s; it was picked up last year on routine bloods, but looking back over old blood tests he has had it for a long time. For him the big thing seems to be that he needs to eat often; he needs to eat something small before bed and breakfast soon after getting up otherwise that seems to send his bili high and heading for a flare up. If he doesn’t eat before bed he generally can’t sleep either. I guess he’s lucky because it doesn’t seem to have any really major impact for him so far …

nolovelost · 23/06/2021 19:27

@Achangeisadgoodasarest what were you diagnosed with later?

2gorgeousboys · 23/06/2021 20:14

I was diagnosed as a teenager after a routine blood test. No real symptoms but I have Endometriosis so there could be things masked by that. DS2 also has it. I can always tell when he's tired of run down as the whites of his eyes go yellow and he looks jaundiced.

Aurorie11 · 23/06/2021 20:17

I've got this but never any issues with it

Achangeisadgoodasarest · 23/06/2021 22:12

@nolovelost it was PNH, a rare type of haemolytic anaemia. I also have Gilbert’s, just had no symptoms until the PNH kicked off.

BulbasaurusRex · 23/06/2021 22:31

I was diagnosed with it about 5 years ago in my early 30s after I’d had a virus and felt wiped out for weeks.

I get a really bone-achingly tired feeling sometimes and then will look in the mirror and see my eyes are a tiny bit yellow, normally after a few bad nights sleep or my period or a lot of stress.

I’ve found trying to keep my hormones and blood sugar more balanced has helped me a lot. I used to eat little and often but on the advice of a nutritionist switched to 3 high protein meals 5 hours apart each day and it has made a huge difference to me.

Sleep is an ongoing issue for me, I’ve never been a great sleeper. I find taking a magnesium supplement before bed helps.

Lushmetender · 25/06/2021 12:25

My FIL is a GP and says it’s common - 1/20 have it and he’d diagnosed his son (my husband) years ago as he had it and his son was always looking white/yellow. He used to be really bad with creamy stuff, anything v rich. Coffee, wine etc. However much more practise means he eats all those things and doesn’t feel as metAbolically challenged as we put it. I reckon it means you’ll probably not process drugs as well (DH has a reall issue with cocodamol whereas has little effect on me. DH can only drink decaf coffee

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