Gilbert’s Syndrome and medication processing

Recently evidence suggests that people with Gilbert’s syndrome may show increased toxicity compared to unaffected individuals following use of medications which are metabolised by glucuronidation in the liver. This has been reported with some anti-cancer agents and also with paracetamol, where they may be more prone to toxicity after paracetamol overdose.

17 Replies to “Gilbert’s Syndrome and medication processing”

  1. I’m a 75 year old female and about 6 years ago was diagnosed with GS just through a regular blood test. Although my doctor briefly explained what GS is, however I was given no in-depth information. It is only when I’ve been doing my own research that I’ve come across your site which has definitely been so informative, thank you.
    The issue which I’d like to raise is the terrible reaction I experienced following the three Covid 19 vaccines ( 1st & 2nd was Astra Zeneca & 3rd booster was Pfizer. My symptoms following the 1st vaccine was I experienced was severe, uncontrollable shivering and severe pain around my pelvic area. My symptoms were slightly better with my second vaccine and again similar severe symptoms with the 3rd vaccine.
    The shivering subsided within 24 hours however I generally did not feel well. And the deep internal pain continued until my GP referred me to have a urine test.
    My urine results showed I had microscopic blood in my urine. I also started experiencing irregular heart palpitations. I had none of these symptoms prior to having these vaccines.
    I was told by my Dr that the reaction to the vaccines was due to my good immune system & therefore my reactions to the vaccines.
    I consider myself quite healthy, I do not have any chronic health conditions and I am not on any medications.
    I also have thalassemia which was diagnosed 20 year ago.
    I strongly believe that Drs do not know enough about cases like mine.
    Would love to hear your comments. Meantime I will continue reading your articles on this subject which has been an eye opener for me. Thanks, Sato

    1. Hello Sato, thank you so much for sharing your experience. It sounds like you had a difficult time with your vaccinations. I see your Dr thinks that this was a strong immune response. I know we all have different reactions to each vaccination. There doesn’t appear to be a correlation with Gilbert’s Syndrome at this time. I am keeping an eye on this! Meanwhile, it would be good to hear any other people’s experiences. Thank you again for sharing your story, and wishing you good health.

  2. Hi. I am waiting for knee surgery and I have really strong pain and not sure what painkillers I can take before and for after surgery pain. I know I can’t take paracetamol. Ibuprofen and Naproxen doesn’t help with the pain. My doctor wanted to give me Codein but I searched it and some websites says it shouldn’t be taken with Gilbert syndrome. Can you suggest a list of painkillers and opiates for after surgery which are allowed with GS, please?
    Thank you!

    1. Hi there, opiate based pain killers are processed in the phase II pathways of the liver and so will trigger your Gilbert’s Syndrome. However, depending on the intensity of the pain they can still be used – just be aware they may make you feel really unwell if you are prone to Gilbert’s Syndrome symptoms. When I have previously had surgery my anaesthetist deployed a diclofenac based pain relief instead of morphine (this is commonly found under the brand name Voltarol). You can use paracetamol if necessary, but again, it will make you feel unwell for a while. I have managed post surgery pain with ibuprofen, but you mentioned it doesn’t help for you – however, if that’s related to the knee pain rather than pain from surgery, you might find it offers some relief post-surgery. When I have been in extreme immobilising pain, such as through a herniated disc, I have taken opiate based pain killers such as tramadol – it helped relieve the pain, but I did feel extremely unwell for several days. This is always a trade off. The side effects won’t harm you in the long term, so it’s a question of which is worse – the pain or the side effects, and that’s a balance you’ll need to work out for yourself. Please remember, I am not a medical professional, but hope that my experiences offer some help. Good luck and let us know how it goes! Best wishes and stay well.

  3. l don’t have a problem with paracetamol however.i have extremely high cholesterol and cannot take medication for high cholesterol.My doctor prescribed them for my twice and both times i ended up in the ER with an irregular heart beat and breathing difficulties and a ridiculously high BP reading.Has anyone else experienced this

    1. Hi Mary, great that you don’t have a problem with paracetamol! One of the positives of Gilbert’s Syndrome is that it protects you against heart disease although you can have high HDL cholesterol. Perhaps share this study with your doctor . I’ll look into medication to reduce cholesterol and Gilbert’s Syndrome, thanks for letting me know the impact on you.

  4. Hi, My daughter is 17 and has GS. She has just visited the family planning clinic and been prescribed a progestogen only pill. Upon reading the small print, it states NOT to take if there are any liver disorders, or any previous jaundice. We made a doctors appoiuntment but the doctor was very scattered in her opinion and said, she’d probably be okay, just maybe keep an eye on her. I’m confused! Any help would be appreciated.
    Kind regards

    1. Dear Gail, most medication will have that same warning. It is disturbing to those of us prone to jaundice! So there are a couple of comments I would share here. Yes, your Doctor will not have the information needed to understand exactly how the progestogen only pill will affect your daughter in relation to her Gilbert’s Syndrome. Hormonal changes do impact symptoms, which is why puberty is usually the point at which people are diagnosed, when there are significant hormonal changes in the body. I, and many other women, have received hormonal treatment over the years, and speaking personally progestogen treatments did not impact me. However, menopause, as oestrogen drops and other hormones fluctuate, definitely do impact some people with symptoms. This means that – firstly, at your daughter’s stage of life her changing hormones are more likely to trigger symptoms, but the progestogen pill on its own may not necessarily be the cause of this. I always suggest that teenagers with Gilbert’s Syndrome need lots of sleep, hydration and a regular diet. This isn’t always possible, and of course the stress of exams and other demands may burden their wellbeing. Support to manage stress levels, and good nutrition are therefore important. If she is feeling particularly tired, then extra rest is important. Do keep an eye on her symptoms and together you can work out how to manage any changes through lifestyle choices. Of course, if you find a significant difference with the progestogen oral pill, then other options such as implants are available which provide lower doses and may be a useful alternative. I am sure your Doctor will happily discuss those if any negative symptoms occur. Wishing you and your daughter all the best.

  5. Thanks guys. This has just answered a big question if mine.

    After having a chest infection and taking a few paracetamol to ease symptoms, it appears to have really bought on my GS issues. Particularly the worst fatigue and lethargy I’ve ever had with Gilbert’s.

    I’m hoping this will clear in time as the paracetamol leaves my body?

    1. Hi Dean, the infection will also stress your liver as well as the paracetamol. Once the paracetamol is cleared from your system its effects will also disappear – in my experience this is shortlived. However, it can take longer to recover from an infection with Gilbert’s Syndrome – in that you may feel tired for longer and have some jaundice, and feel sick. I find I take another week or so to feel up to full steam, depending on the severity of the infection. Get lots of sleep, drink plenty of water and eat whole plant foods to nourish your body. Don’t try to do too much too soon as you may experience a relapse. Please note, I am not medically qualified and any symptoms that concern you should be reported to your Doctor. Hope you feel better soon, warmest wishes.

  6. I have bouts of sickness and have noticed that it follows my taking paracetamol. I have GS and am aware that my liver cannot process certain drugs, could my paracetamol intake, which is rare, be affecting me and causing a build-up in my liver. Should I avoid it altogether and try another analgesia.
    Thank you.

    1. Hi Rachel, I can tell you that paracetamol makes me feel very unwell, and brings on my symptoms. I avoid it completely. The only painkiller I can take is ibuprofen. I can also take painkillers externally such as voltarol for joint pains, and it’s also used as a general analgesic. Hope that helps, Adina.

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