GIlbert's Syndrome and the Nervous System

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Hello!

I am a 22-year old male and I was diagnosed with Gilbert's Syndrome last June.

I started feeling chronically fatigued a couple of months after moving to London, UK to study from my native Poland (3 and a half years ago). Initially, I associated all the negative symptoms with living in a huge city, having to perform a lot of tasks in what was for me a foreign country. So I generally ascribed all those negative experiences to being in a new, stressful life situation. But after a while I noticed that my intellectual capacity was significantly down from what it had been before. Again, I thought it was all due to living in a foreign country, speaking a foreign language and being overworked.

As this condition continued I started thinking it could have a purely medical cause, especially that I was constantly ill (that is I was ill for 2 weeks, then healthy for the next two weeks, then ill again). I concluded, however, that this might have been caused by my immune system adjusting to living in a global metropolis where you get all kind of germs from all sides of the world constantly floating around you.

Towards the third year of study I began to be inclined towards a psychological explanation of my condition as I was constantly stressed and I had reasons for that. Most of the time I was unable to get any work properly done, mostly because I felt dizzy and/or 'brain-foggy' which prevented me from staying organised. I was becoming increasingly forgetful, often unable to keep track of my duties, which sometimes made me rather rude to people surrounding me, because I felt I was unable to cope with their demands despite my good intentions.

I signed up to counselling sessions run by the university. As much as I found the sessions themselves soothing their outcome was rather poor, because the second I left the room I would be back in the stressful reality.

But even when I had absolutely no reasons for being stressed and my mind wasn't really stressed either, my body was constantly tense, sometimes sweating (especially the hands and feet) as if trying to tell me "Don't forget to stress out!". That continues to this day.

All this led me to have some medical tests done. It was a blood test in which an increased level of bilirubin was detected which led the doctors to suspect I had Gilbert's Syndrome. I know that one of its symptoms can be a chronic fatigue and dizziness. However, if I indeed suffer from this condition, it is very mild as my eyes aren't yellowish.

This was compounded by bouts of feeling hot (especially in the face) and of increased hart-beat which were signals sent by my body that I was going to enter a period of stress. I often get increased heartbeat, which sometimes prevents me from falling asleep, as well.

I have also become incredibly impatient. I always want to get done as many things as possible in a as short a period as possible. Interestingly, I would say that this is an outcome rather than the cause (or one of the causes) of the condition discussed.

After successful graduation I decided to return to Poland to continue my studies. I made this decision largely because of the condition. I thought that perhaps returning to the relative security provided by my family and an easier financial situation would make me recover. To my very big surprise I can now say that the condition has worsened since coming back from London rather than the other way round. Although, now it seems to be coming even more from inside my body, or more specifically the nervous system. I have become even more disorganised and forgetful. I have also been getting a lot of worrying nervous syndromes, such as the now more frequent bouts of increased heartbeat, sweating, inability to focus (especially on reading as I have convergence insufficiency of the eyes) and over the last month my left eye's lid has been twitching a lot which I found extremely annoying. I do not need to mention the fact that I am now sure that my IQ has decreased significantly (although, comfortingly, I am sure it's only hidden behind the brain fog because on the rare occasions I feel perfectly well I know that my intellectual abilities are just as they used to be, unfortunately that doesn't happen more of te than once or twice a week).

I have now decided to see my physician to get a referral to a neurologist. Do you believe this is the right direction? Could my condition be caused by the nervous system. Does my chronic fatigues have anything to do with the Gilbert's syndrome? Perhaps it's something psychological and I should see a psychologist or even a psychiatrist?

I will be extremely grateful for all your advice and a great thank to all that have read this text to the end!

Huey

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  • Posted

    Hi there

    Sorry to hear about your ordeal.

    I was diagnosed with Gilbert's last week (bilirubin at 40 mmol/l)

    I started having symptoms in a similar pattern to those mentioned here.

    It all started with a holiday where I was drinking every night for 7 days when I was 22 years old (I'm now 33).

    I had really bad brain fog, anxiety and exhaustion for weeks after the holiday which gradually stabilised but is now chronic. I don't know if this is definitely related to Gilbert's but now whenever I drink I have the same issue.

    I have struggled with fatigue and brain fog ever since and one of the most annoying symptoms is problems with temperature control and excessive sweating even when very calm non stressful environments. Also I have been getting progressively worsening IBS symptoms and developed food intolerances. Also I have real problems with word finding when talking and can't remember names of places/people etc.

    I have been for extensive medical exams over the past 3 years and in the end all my levels are normal except the high bilirubin which my doctor assures me there are no symptoms of.

    However over the past week of researching the subject and reading peer reviewed medical research papers on the condition it is now apparent that all of the symptoms that I have been going to my doctor about over the past decade are commonplace in people diagnosed with Gilbert's Syndrome. Many medical professionals have dismissed these symptoms as being caused by anxiety over the diagnosis of the conditions but from everything I have read there is a common pattern of people experiencing the symptoms for years before diagnosis.

    Regarding the nervous system there are several studies which have concluded that high Bilirubin is detrimental to the nervous system (one study even suggests that there is a highly prevalence of Schizophrenia amongst those with Gilbert's)

    https://www.ncbi.nlm.nih.gov/m/pubmed/11105741/

    Also widely reported is a correlation between Gilbert's and Chronic Fatigue Syndrome.

    https://www.ncbi.nlm.nih.gov/m/pubmed/8097856/

    It seems like no one is interested in doing very much further research into an apparently benign condition!

    One key aspect of the condition is that high bilirubin is not the only result of the genetic disorder. People with Gilbert's are also also deficient in a number of enzymes responsible for processing a number of things including SEROTONIN the neurotransmitter ie it may cause lower levels of serotonin in the brain thus causing mood disturbances etc.

  • Posted

    Hello, I'm 13, And at random times, parts of my brain go hot, and I can't seem to feel one part of my face, It also sometimes happens with my legs and ankles, except with them it tingles instead and hurts. I'm not sure why, Thanks for reading

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