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Anybody familiar with Gilbert's Syndrome?

6 replies

tummermum · 01/07/2005 21:42

It's a benign genetic disorder of the liver. Been told my daughter probably has it and I was wondering if any other mums have experience of it.

OP posts:
bigdonna · 01/07/2005 22:32

sorry i have not heard of it just bumping for you so you know someone is here

Twiga · 01/07/2005 23:31

Yes, was diagnosed with this around two years ago (at 25)- apparently extremely common. It's not caused me any difficulties, just tend to be a bit more knocked out by viral illnesses than most folk would be. Also tend to get mildly jaundiced when suffering a viral illness or very tired. Had a brief period over a few months before it was diagnosed where I felt constantly tired and run down - looked into glandular fever etc, only indicator in blood tests done was a raised bilirubin level (pigment which causes jaundice) - conclusion: Gilbert Syndrome. Really nothing to worry about - honest! HTH

SelfIndulgentVerySmugStrugstu · 01/07/2005 23:34

my exdh has this and twiga says nothing to worry about generally. he would have mild jaundice occaisionaly but that was about it. doesnt stop him leading a full and far more exciting life than i do

Pisces · 01/07/2005 23:37

Gilbert's syndrome

Gilbert?s syndrome is a harmless condition but often causes anxiety before the condition is diagnosed.

Haemoglobin is a chemical in the red cells that carries oxygen to the tissues. One of the breakdown products of haemoglobin is called bilirubin. An enzyme called UDB glucuronyl transferase helps the body get rid of bilirubin. Gilbert?s syndrome is a genetic disorder which means that there is a slight deficiency of this enzyme.

When there is less enzyme than normal, levels of bilirubin increase in the blood and the person may notice jaundice (yellowing of the skin and whites of the eyes). This jaundice may become more pronounced when the person is stressed, either physically or mentally. Thus, jaundice may develop when the person becomes ill with an infection or when stressed, for example when taking an exam.

Gilbert?s is often diagnosed in the late teens and early twenties. The condition is inherited and is relatively common being estimated to affect about 1 person in 20. Men are often affected more than women. The condition usually has no symptoms although some people do complain of stomach pains.

Gilbert?s syndrome is usually detected because of mild jaundice, or because slightly abnormal liver tests are noted when blood tests are performed for unrelated reasons. It is important to make the diagnosis so that the person can be reassured and serious liver disease excluded as a possibility.

The diagnosis can often be made on the basis of simple blood tests. All the liver tests should be normal apart from the serum bilirubin, which is increased.

Different blood tests may need to be carried out, if there are other symptoms. These will look for other reasons that the levels of bilirubin might be raised, such as other undiagnosed liver diseases. It is only rarely that a liver biopsy is necessary. In some cases more specific tests may be needed to confirm the diagnosis and this should be discussed with your specialist.

It is important for the patient to understand that Gilbert?s syndrome is not a disease.

Support Group

Action on Gilbert's Syndrome

www.gilbertssyndrome.org.uk

tummermum · 02/07/2005 10:36

Many thanks everyone. This is all very reassuring. Will definitely visit the website. Twiga, your account of the period before diagnosis is practically identical to DD's experience only she's a lot younger (13). GP also speculated that she may have had glandular fever. Interesting that gp, even after high bilirubin level detected, never once mentioned Gilberts. Considering it's supposed to be so common, hardly anybody seems to have heard of it!

OP posts:
jummie · 15/05/2007 15:41

hello are there any twins out there that have gilberts?if so would love to hear from you as my sons have it

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