Gilbert's syndrome...

[mrsk63]

Have been back to see the Dr today for my latest blood test results and my ALT has come down, now more closer to the correct count, but my bilirubin is still slightly high although not enough to ring alarm bells for the Dr. I did ask about a scan on my liver but he said the counts were not overly worring, he did tell me the correct count and what mine actually were, I think the ALT was in the 60s but is now in the mid 30s, the reason for LFT were spots appearing spider naevi he called it, so they were just to check what was actually going on more a process of elimination. So this has lead the Dr to think I have Gilbert's syndrome, although he doesn't think the sunburn feeling that I get is connected, I was wondering if anyone sufferes from this and what symptoms if any do you get?

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I was diagnosed with Gilberts syndrome the same time as I was diagnosed with Parkinsons my GP apparenlty must have been flipping through my notes when he noticed consistant high Bilirubin levels in blood tests he concluded I had Gilberts syndrome I have had problems since 1982 when I had cholecystogram I suppose these problems stem from then, but it seems Gilberts was not considered. I only started having blood tests regularly when I went for general check ups as I got older. I presume I had Gilberts for many years previously I am never certain when I feel off colour if it is the PD or Gilberts.

There is a lot of infor on the net about it diets etc. it is not supposed to cause any problems but I think it can makes life a little more intolerable at times.

[Dorset123]

I was also told I had Gilbert's This turned put to be NASH. It may be worth getting a specialist referral to be reassured.

Good luck

[mrsk63]

Thank you for the replies.

I did ask about a scan and Dr said if he was at all worried about my results he'd have had me at a specialist back in December or February, not said in a nasty tone, but as counts had come down on both tests he didn't feel worried. I have changed my diet along the way and Dr said keep going as I am but if I do feel things changing don't hesitate to go back. I can see his point that if my bloods were not showing a higher than normal count then its no good having a scan if there is nothing to warrant it. As I said before it was the spider naevi that got the ball rolling, I had spots appearing for gone 2 years which I put down to age spots, that made him think my liver count would be very high but they weren't. And although I don't drink alcohol sometimes my diet isn't as good as it could be. I did suffer from a pain under my bust area but have put on a bit of weight around that area so the Dr said that in itself can make sitting down more uncomfortable. I must confess I'm more bothered about the spots from the spider naevi as they are rather unsightly but as I've had them for so long now and had tests for thyroid and diabetes inbetween I should maybe stop worring as I'm sure anything more sinister would have been picked up.

[tatopianbo]

Hello. I have Gilbert's syndrome, my billirubine was high... then I take Phenobarbital (which is terrible), and now, till the end of my life I have to keep my diet - no fatty food, no beans or mushrooms, no spisies... You can't carry heavy things, or phisically tired too much, because your billirubin will go high and you'll feel really terrible, and your skin will become yellow.

The most terrible thing about Gilbert's syndrome is that it have no remedy, and the other thing is, that all doctors say "it's not sickness it's just a syndrome, it don't need any treatment", but in real it make you feel very weak and sick, you can't work very hard, you have to eat every 3-4 houres... if you'll need any advise about it e-mail me..

[hoke74]

My dh has Gilbert's syndrome.

At times he looks a little jaundiced in his eyes. He seems to have flare ups of the Gilbert's. And when he does, his main symptoms are extreme tiredness and when he catches a cold, it seems to hang around a little longer. Apart from this generally he is really fit and healthy - he's a triathlete and the Gilbert's doesn't really bother him - when he's tired, he rests and when he gets a cold, he gets a genuine case of "man flu"

We don't worry about ALT numbers because by complete chance our ds has Biliary Atresia, so we have learnt that real worrying ALT and LFT results are much much higher - your go is right with those ALT numbers you don't need to be concerned.

Itchiness of the skin is often associated with liver problems - I've not heard of skin feeling like it was sunburnt. That's interesting. Good luck

[Martines52]

Hi everyone, I’m new on here. My son is 9 and has Gilbert’s, he was diagnosed when he was age 6 and is constantly jaundiced, skin yellowish and white of eyes yellow, they have been like this from he was 2 hence the reason I had him investigated on several occasions through the NHS and also went private just to be sure as I wasn’t going to be convinced that easily. After several blood tests over the years not much has changed he is healthy and doing great however the yellowing bothers me. Here is the mind blowing thing, he has Been constipated recently and ever since he’s been put on his laxapro his colour is coming back for the first time in years.... 😮😀

Have any of you experienced this? That when you are constipated you are more jaundiced?