Why is it important to raise your Gilbert’s Syndrome with health professionals?
There are lots of reasons why it’s important to share your Gilbert’s Syndrome diagnosis proactively, with your health professional. Here are just some:
Your Doctor
Your doctor can prescribe you more effective medication when they know what may make you feel unwell. This includes medication such as certain antibiotics, paracetamol, https://gilbertssyndrome.org.uk/gilberts-syndrome-and-medication-processing/ and opiates. You can alert your doctor to possible side effects that could concern them – jaundice, nausea, stomach problems, exhaustion etc. Avoiding these side effects will help you feel better rather than add to other negative symptoms.
Your Surgeon
Your surgeon needs to know that certain chemicals used during a procedure may be less efficiently removed by your body. Steering away from morphine, and keeping anaesthetic https://gilbertssyndrome.org.uk/general-anesthesia-in-a-patient-with-gilberts-syndrome/ to a minimum may enable you to feel better more quickly after an operation. There are a number of studies in the use of anaesthetic in patients – here’s another you might want to refer your surgeon or anaesthetist to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127312/
Blood tests or other tests performed at the hospital may look abnormal without an understanding that you have Gilbert’s Syndrome.
Your health coach / advisor
A nutritionist, dietician, or other health advisor can support you more effectively by understanding that you need to pay special attention to the Phase II https://gilbertssyndrome.org.uk/glucuronidation-where-gilberts-syndrome-works-in-your-liver/ pathways of the liver . They will be able to provide advice which takes account of your triggers and symptoms, such as reducing simple carbohydrates, keeping fats to a minimum, ensuring your blood sugar remains stable with no detox or fasting diets.
Any extreme diet may have a knock on effect that could make you feel unwell. Using a symptom diary such as this: wellandgoodlife.co.uk symptom tracker can help you and them monitor the effect of any change in diet, health or lifestyle changes.
What should I say?
The key words/phrases you may share with your doctor or medical professional:
I have a genetic condition that means I have a reduced enzyme function, responsible for glucuronidation in the Phase II pathways of the liver.
Don’t be afraid to ask your doctor:
- Could you tell me whether this drug or my treatment will be affected?
- Is there an alternative or a lower dose that might be an option to try?
For non-medical health professionals you may want to say:
My liver doesn’t work as well as some people, and I’m not able to process some substances efficiently. My condition is called Gilbert’s Syndrome and I can share more information about it.
You can direct them to the www.gilbertssyndrome.org.uk website for more information. Or if you they have specific queries they can email help@gilbertssyndrome.org.uk
It might feel difficult, but it works…
I have had a successful conversation with many medical professionals, when being treated with antibiotics, painkillers and before surgery. On each occasion they have listened, researched and changed their approach. This has meant I have responded better to treatment, and felt better more quickly.
My story
Sometimes there’s no alternative treatment.
Knowing what this will do means that you can understand why your body is responding in a particular way.
For example – One time I had a seriously high temperature during a kidney infection. As well as being isolated in a cold room with a fan and no covers, the only treatment available to reduce my temperature was to take paracetamol. Given the danger of not reducing my temperature taking paracetamol was sensible. It did add to my jaundice and nausea, but it brought my temperature down and avoided the most urgent danger.
Being able to tell the health professionals that I would respond poorly to paracetamol and that it would additionally stress my liver, as well as the intravenous antibiotics they were flooding me with, also meant that the doctors and nurses had an understanding of why I was becoming jaundiced and feeling extra nauseous. It was important for them to know that this wasn’t a liver failure situation, and was a temporary enzyme problem.
Top Tips for a good appointment with your doctor
Write it down
In the UK NHS and other places around the world you have a limited time with your primary care medical professional. If you go with a list of your symptoms, when those symptoms started and what your biggest concern is then you can immediately answer their first questions.
Take a friend
If you have someone with you they can prompt you if you forget what you were going to say or ask. They can also help remember what was said.
Write it down!
Note down the doctor’s feedback and next steps. This will prompt you to clarify anything you’re not sure of. Remember, your doctor has a vast amount of knowledge and limited time with you. Don’t walk out of the room without being clear on what happens next and why.
Tell them about your situation
Don’t forget to tell them important information that may be buried deep in your records, or about any recent changes that may affect you.
They may have glanced at what medication you are currently receiving, but they may not realise you have other conditions or changes in your information. Do mention any herbal or other supplements you are taking as this can change blood test results or the way medications work.
If you are trying to get pregnant, or are experiencing changes in your body as you approach the menopause, this may affect what they prescribe, what blood tests they select and other treatments or conclusions.
Tell them if you have a condition like Gilbert’s Syndrome if they prescribe you a medication, or any other condition such as IBS, depression or if you are on a particular diet.
Also, don’t forget to check if they prescribe you something that may affect your ability to work, and ask for a note to give your employer. For example, if you drive for work and you take medication that impacts driving or operating machinery; if you stand all day and your medication impacts your balance etc. In my experience your Doctor may not always remember that you may have to go straight back to your workplace and that your work may rely on you being able to manage particular tasks that medication side effects makes challenging.
Your doctor will usually be very happy to help support you stay well in the best way for you!
This video has some great tips for making the most of your time:
You can find more resources about having a good conversation with your doctor here.