A few months ago I noticed that the whites of my eyes had turned slightly yellow. It turned out that I had a mild episode of jaundice. My GP was a bit mystified – so I was sent to see a liver specialist who diagnosed a condition called Gilbert’s Syndrome. The specialist said it was nothing to worry about. However, as he had seen other people with ME/CFS with the same condition, he wondered whether there may be a link. Is this so?
Firstly, the liver specialist is correct. There is some research evidence to indicate that Gilbert’s Syndrome may be more common in people with ME/ CFS. So it’s something that people with ME/CFS need to be aware of. Gilbert’s Syndrome is an inherited condition whereby the liver isn’t able to properly process the breakdown of a substance called bilirubin from time to time. Bilirubin is a natural byproduct of the breakdown of old red blood cells. If the level rises too high it causes jaundice with yellowing of the eyes and skin.
It’s thought that about one person in twenty carries the faulty gene for processing bilirubin and men are more likely to be affected than women. The most common age for onset of symptoms is in the teenage years and twenties. Fortunately, Gilbert’s Syndrome isn’t related to more serious liver disease, so it doesn’t need to be treated.
However, it is worth being aware of things that can trigger attacks – many of which are factors that also cause exacerbations of ME/CFS. The most common triggers being:
- Lack of food and fasting.
- Alcohol – which is not usually a problem for people with ME/CFS.
- Physical exertion.
- Lack of sleep.
When to see a GP
See a GP if you have an episode of jaundice for the first time. The jaundice of Gilbert's syndrome is usually mild, but jaundice can be associated with more serious liver problems, such as cirrhosis or hepatitis C. It's important to get immediate medical advice from a GP if you have jaundice. If you cannot get in touch with a GP, call NHS 111 or your local out-of-hours service for advice. If you have been diagnosed with Gilbert's syndrome, you do not usually need to get medical advice during an episode of jaundice, unless you have additional or unusual symptoms.
- Please let us know if you have ME/CFS and Gilbert’s Syndrome and whether there is anything specific that triggers attacks: Feedback@meassociation.org.uk
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.