So you have lots of bits of information about COVID-19, but what do they add up to if you have Gilbert’s Syndrome? Well, there are a number of things I can tell you which should help join the dots and give you the big picture of where you stand when faced with COVID-19, if you have Gilbert’s Syndrome.
First of all, we have to understand what type of virus COVID-19 is.
It’s a virus similar to the flu and colds. Because it’s new no-one had it before and so no-one is immune and can catch it easily. You can catch it the same way you catch any cold or flu – the virus travels in tiny droplets pushed out from the infected person’s nose and mouth when they cough or sneeze. It either goes straight into your mouth or nose, or sits around for a while waiting to catch a ride on your body. The virus hijacks your cells in your nose, throat and lungs and multiplies. Your body then responds with the usual attack mechanisms, and depending on how healthy your immune system is, and how much of the virus you have been exposed to, you can see it off or have a more severe, possibly fatal reaction. The severe reaction is partly because the body’s immune system response goes into overdrive and the lung tissues become blocked because they become inflamed – which is why people have difficulty breathing.
Okay, so far, it’s pretty straightforward – but there are differences in how viruses can affect people. This one is pretty different where children are concerned (see below). Others can also affect the liver more – recently the pandemic of 2009, H1N1, was shown to cause liver damage: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4941665/
So far, studies show that COVID-19 doesn’t seem to cause permanent liver damage, although there can be some impact on the liver initially, which doesn’t appear related to the medication given to patients, as this extract from The Hindu, and the Lancet journal text extract below show:
Liver damage in mild cases of COVID-19 is often temporary and the organ can return to normal without any special treatment. This could be due to the state of direct infection of liver cells or could as well be due to liver cells getting caught up in the immune war between body’s immune system and the virus with chemicals produced by our body, namely cytokines. The Hindu
https://www.thelancet.com/journals/langas/article/PIIS2468-1253(20)30084-4/fulltext :
‘mild liver test derangement is present at baseline in many patients with COVID-19 before significant medication use. Ie. the liver is impacted before medication is given’
‘It has been proposed that COVID-19 causes direct liver injury via a viral hepatitis, but we believe that there are alternative explanations. First, the derangement of liver function is clearly mild. Second, when liver function tests for patients with different durations of symptoms are examined, there is no evidence that later presentation is associated with greater liver function derangement.’
What’s also great to hear is that: ‘worse outcomes were not seen in the 42 patients with chronic liver disease and COVID-19 who had outcome data’
The greatest problem that people will face when fighting off COVID-19 are underlying health problems which impact the immune system:
https://patient.info/news-and-features/covid-19-coronavirus-what-is-an-underlying-health-condition
In which case you must take special care!
Paracetamol, ibuprofen and COVID-19 – originally it was thought that ibuprofen might cause problems for people with COVID-19, and for those of us with Gilbert’s Syndrome this was bad news. Paracetamol has been shown to impact the liver more in people with Gilbert’s Syndrome (it makes me feel VERY ill),https://www.ncbi.nlm.nih.gov/pubmed/10412886 , so ibuprofen might by your painkiller of choice. Fortunately the WHO and governments have given it the all clear https://www.gov.uk/government/news/commission-on-human-medicines-advice-on-ibuprofen-and-coronavirus-covid-19
So, you should not worry more if you have Gilbert’s Syndrome as COVID-19 doesn’t appear to have an especial impact on the liver. However, just on flu and colds generally – the stress on your body can make you feel really unwell and trigger your Gilbert’s Syndrome symptoms. This is important to tell clinicians if they are treating you so that they can understand what’s happening to your body and why.
Check out this leaflet from an NHS trust and its recommendations to get the flu vaccine if you have a liver disease, including GIlbert’s Syndrome. https://psnc.org.uk/avon-lpc/wp-content/uploads/sites/23/2015/07/Liver-Disease-and-Flu-Vaccine-Importance.pdf
There may be other questions that we can’t answer such as – is there a link between low white blood cell counts, Gilbert’s Syndrome and fighting infection; what if some of the medication used in the treatment of COVID-19 is processed in the pathways of the liver affected by our enzyme deficiency. As it appears there is a link between high levels of bilirubin and reduced white cell count https://journals.sagepub.com/doi/10.1177/0004563214541969 (topic for another post!), you could potentially hypothesize that this is a good thing – as the overproduction of white cells is part of the excessive inflammatory response I talked about that can actually harm not heal. As mentioned above – do let your clinicians know you have Gilbert’s Syndrome and that some medication, processed in the Phase II pathways, isn’t dealt with as well.
If you want to know more about how COVID-19 virus works and how the body responds (knowledge is power after all), check out this video from Yale: https://www.youtube.com/watch?v=vvKhT9tAhig
And if you’d just like to feel like you know a bit more about how the liver works check this out: https://www.healthline.com/health/what-does-the-liver-do
But wait – why doesn’t it affect children more, like other flu and colds? How is it different?
https://time.com/5816239/children-coronavirus/
Why are children less affected when their immune system is still developing? It’s theorized it is BECAUSE their immune system is developing that the life threatening response to COVID doesn’t occur as much in children – the adult body’s immune response includes a ‘cytokine storm’ which results in an inflammatory response in the lungs, making it hard for adults to breathe. Children’s bodies don’t yet respond as aggressively to the virus.
https://royalsocietypublishing.org/doi/pdf/10.1098/rspb.2014.3085
As age advances, the immune system undergoes profound remodelling and decline, with major impact on health and survival [81,82]. This immune senescence predisposes older adults to a higher risk of acute viral and bacterial infections. Moreover, the mortality rates of these infections are three times higher among elderly patients compared with younger adult patients [83]. Infectious diseases are still the fourth most common cause of death among the elderly in the developed world. Furthermore, aberrant immune responses in the aged can exacerbate inflammation, possibly contributing to other scourges of old age: cancer, cardiovascular disease, stroke, Alzheimer’s disease and dementia [84]. During a regular influenza season, about 90% of the excess deaths occur in people aged over 65.
I hope this information helps you live better with Gilbert’s Syndrome!
Iwondered wether anyone has experienced pins and needles along with itchy feet? They are more and more frequent with me. Last year I had blood tests (after seven weeks of total abstinence from alcohol) and my tests were within normal range apart from bilirubin and slightly low white cell count, and it was at that point it was suggested that GS was the cause. i had thought my symptoms -fatique pins and needles were due to long term alcohol use. I get oins and needles regularly now and if it werent for them I’d feel convinced I had Gilberts syndrome.
Hi there, great question. Have you read the article on B12? That might offer some thoughts that could shed light on your situation. It would be interesting to hear if anyone else gets pins and needles. If you have low B12 it can cause pins and needles, for example. https://gilbertssyndrome.org.uk/b12-deficiency-and-gilberts-syndrome/ Let me know if B12 helps. Take care.
Have Gilberts, received both Pfizer vaccines for Covid -19, no issues or any side affects other than sore arm.
I am a 21 year old female with Gilberts syndrome. I was wondering if I am considered to be in an Immunocompromised state because of Gilberts syndrome?
Hi Kate, thanks for the question. Certainly here in the UK you would not be considered immunocompromised because of Gilbert’s Syndrome. If you get an infection you might get Gilbert’s Syndrome symptoms, but your immune system itself shouldn’t be affected. If you take medication because of an infection, be aware that some medication, such as paracetamol may trigger Gilbert’s Syndrome symptoms.
I am a fit & healthy 60 year old female with Gilbert’s. Tested positive 29 October for COVID 19 along with 4 other family members aged 8-61. They are all fine now while I have painful swollen neck glands an ear infection and fatigue. Anyone having a similar experience? Any advice?
Hi Debbie, I am sorry to hear that your family had experienced COVID-19. It sounds like you are still suffering some viral load. It would be something that your Doctor can confirm and give you further advice on. Some people do seem to experience longer term symptoms of COVID. There’s currently no evidence of COVID being worse in people with Gilbert’s Syndrome, but that doesn’t mean to say that it isn’t. There’s still alot of research to be done on why some people are experiencing ongoing symptoms. If you have any bacterial infections that could be a sign your immune system is wound down. Eventually antibiotics for bacterial infections (if they don’t clear up on their own), lots of rest and time should see some recovery. However, with COVID, there are still unknowns, aren’t there. Definitely stay in touch with health professionals so that they can give you the benefit of treatments and knowledge at it evolves. Advice from any other readers is welcome. Take care Debbie!
Hi Debbie,
I have not had Covid but I too am suffering badly with painful swollen neck glands, pain in my ear and fatigue. Now I’m wondering if it’s down to our Gilbert’s and not Covid?. I wonder if other People with GS are suffering from this?
Thankyou for sharing.
I have Gilbert form childhood and I had a very strong weakness in August 2020 as I had to stay in bed for 2 weeks, I did not did a test but I think it is COVID-19 what I want to ask and tell you that the last 3 days of these 2 weeks when I was sick my white part of my eyes were very white unlike what are they used to be (yellow), now it is turned back to the normal color (yellow). It was the first time I saw my eyes that white. What happened any one have explanation for this please.
Interesting question Ghaith! Perhaps by resting for 2 weeks your body was able to recover well and clear bilirubin from your system, and then reverted to mild levels of higher bilirubin when you went back to your normal activity? I have sometimes felt at my best at the end of a virus when I have had lots of rest and just recovered, but before going back to work. It would be interesting to hear if others have a similar experience.
I am a healthy 50 year old with Gilberts syndrome. I contracted Covid-19 at the beginning of April and I am now fully recovered. I was tested for Covid-19 anti-bodies and have both short and long term anti-bodies – I definitely have had Covid-19.
I took only paracetamols which made a huge difference to my symptoms but on NHS advice did not take ibuprofen.
I spent an uncomfortable week in bed and then a slow recovery with extreme fatigue. Five weeks later I am back to normal.
Please do not over worry about this virus, be sensible and take care.
Hi, did you noticed any change of the color of your white part of your eyes?
I suffer with Gilberts Syndrome, I find it seems to affect my bowels, I can get constipated very easily and have to take daily laxatives, I also suffer with nausea and dizziness which seems to ease when I go to the toilet if i exert myself this brings on nausea and dizziness .