Go! Find out you’ve got Gilbert’s Syndrome!

Posted on October 4th, 2008 by Purple13

A U.K health warning brought to you by GO! Smell the flowers founder Purple 13…..

Have you heard of Gilbert’s Syndrome often shortened to GS ? No, not the one where you keep breaking out into ‘a British tar’ – like the guy in Raiders of the Lost Ark or Star Trek – Nemesis.

A letter arrived from my Doctor inviting me to GO! have a Flu jab. I’d been selected despite a shortage of vaccine because I fell into a risk category – i.e over 65 (no!), suffer from diabetes (nope), heart, kidney or liver disease (not last time I looked).

So why me – surely a clerical error? I called the Doctors and it was a good job that I did…..

"Hello, yes well you’ve sent me this letter about having a flu jab but I really don’t think i fall into one of the at risk categories"…."you’ll just check my records"…. "what do you mean I’ve got Gilbert’s Syndrome?" (voice rising slightly)…."I was diagnosed in 1997"…. "My god, I’d better sit down before I die"…

It’s not nice being told you’ve got something potentially nasty wrong with you – what about those lists of things to do, the unfinished project at work, hoovering the car….. so I Googled away to see what it was I had and what it meant.

"You’re yellow, you feel sick, can’t think straight and are exhausted, what is happening?

GS is named after a French Gastroenterologist, and it’s sometimes called ‘Unconjugated hyperbilirubinaemia’. GS is thought by some scientisists to be inherited and it is caused by a mutated gene UDP – glucuronosyltransferase), which leaves those affected with less of the related enzyme (called UGT for short). An enzyme is a chemical substance in your body that causes a chemical reaction to happen. Lack of this particular enzyme, UGT, is the key to what happens in our body and results in the symptoms we can experience:

Jaundice –


Red blood cells release ‘bilirubin’ into the bloodstream, which the liver should pick up and convert to bile, and then flush from the body. In GS, without the enzyme needed to do this properly, the bilirubin builds up and and can make you look yellow. It’s also key in diagnosing GS, through blood tests which identify fluctuating levels of bilirubin in the blood. GS is also known by this symptom as Unconjugated hyperbilirubinaemia.

Toxic reactions –


Parts of the liver, called the ‘Phase II’ pathways, process certain toxins, for example: pollution; chemical fumes; and chemicals in some drugs. This process, called glucuronidation, has been reported to be 31% slower in the typical person with GS. Numerous studies have shown various drugs are processed less well by people with GS.

Many of the resulting symptoms of our liver’s reduced ability to do the cleaning it’s designed to – jaundice, nausea, fatigue, shakiness, bowel complaints, vomiting, ‘brain-fog’ or difficulty concentrating, are experienced in varying degrees by those with GS.

It seems that certain activities may make these symptoms worse, by placing further stress upon the liver. Missing meals, lack of sleep, vigorous exercise, illness and stress can all bring on the symptoms."

So the good news is I’m not going to fall down and die today! I’ll check the back page of the paper tomorrow morning and if my names not listed in the hatch, match and despatch chronicals, then its safe to get up too.

The other good news is that a lot of the symptoms I recently blogged about here may now have a medical reason. So, concluding I ask:

1) Have you ever found out about an illness or disease in an off hand way that dramatically altered your life?

2) Could this be a case of fitting the symptoms to a convenient cause? Isn’t that potentially more dangerous?

I’ll post this over on Forums if anyone wants to contribute to Gilbert’s Syndrome ‘group’ more medically.

I did often wonder about that brain fog thing after drinking alcohol – my mates were always able to drink me under the table! All comments welcomed, thanks.


24 Responses to “Go! Find out you’ve got Gilbert’s Syndrome!”

  1. How can it be “a case of fitting the symptoms to a convenient cause?” It is a genetically inherited disease that obviously you were tested for.

    Am I going to be good or can I say it, huh…Can I, can I…I can’t hold it in. I TOLD YOU to go to the doctor and that there could be a medical cause for it!!! Actually, that was my suggestion, but I’ve always wanted to say, “I told you so.” I think that you should still see your doctor.

    This is from the MayoClinic.com. I did some research on the Internet and there is no treatment for your symptoms other than lifestyle changes.

    Lifestyle and home remedies
    Certain events in your life can trigger episodes of higher bilirubin levels in Gilbert syndrome, leading to jaundice. Doing what you can to manage those situations can help keep bilirubin under control and perhaps prevent bouts of jaundice.

    These steps include:

    Avoiding infectious illnesses, such as colds and the flu
    Managing stress
    Eating a nutritious diet, and avoiding fasting and skipping meals

    Well meaning and caring,

    CC

  2. Jim says:

    Thanks for the health update Purple – hopefully more will follow your lead and share things like this as and when they crop up here at flowers. I’d never heard of Gilberts at all so all new to me.

    I’m still unclear if your condition is inherited through your genetics OR brought on by your lifestyle or a combination of both?

    • My understanding is that it gives you a genetic predisposition to having the symptoms, but it is your lifestyle that will prevent them from occurring. I have posted other information in this post and in the forum. The following is taken from MayoClinic.com. Sorry, if I stepped on your toes Jonathan. ;-)

      Definition
      Gilbert (zheel-BAYR) syndrome is a common, mild liver disorder in which the liver doesn’t properly process a substance called bilirubin. Bilirubin is produced by the breakdown of red blood cells. Also known as constitutional hepatic dysfunction, unconjugated benign bilirubinemia and familial nonhemolytic jaundice, Gilbert syndrome typically doesn’t require treatment or pose serious complications.

      In fact, Gilbert syndrome is usually not considered a disease because of its benign nature. You most often find out you have the disorder by accident, when you have a blood test that shows elevated bilirubin levels.

      Gilbert syndrome affects 3 percent to 7 percent of the U.S. population. Worldwide estimations vary, and no good measure exists. More males than females have the condition.

      Symptoms
      Usually no symptoms, sometimes jaundice
      As an inherited condition, Gilbert syndrome is present from birth. Although it rarely causes symptoms, it may raise bilirubin enough to produce mild jaundice.

      While the bilirubin does not reach a dangerous level, the appearance of jaundice may be unsettling. Typically, excess bilirubin turns the whites of your eyes yellow before affecting the color of your skin. If the bilirubin level keeps rising, your skin may develop a yellowish tinge.

      Possible symptoms
      You may experience episodes of:

      Fatigue
      Weakness
      Abdominal pain
      However, it’s not known if Gilbert syndrome actually causes such symptoms, or if they’re related to stress or other conditions.

      Factors that may increase symptoms
      A number of factors may increase bilirubin if you have Gilbert syndrome. These may include:

      Illness, including infections, such as a cold or the flu
      Menstruation
      Fasting or skipping meals
      Dehydration
      Overexertion

      Causes
      If you have Gilbert syndrome, you have inherited an abnormal gene that controls the enzyme that helps break down bilirubin. Bilirubin is a yellowish pigment and is a normal waste product from the breakdown of old red blood cells. Bilirubin travels through your bloodstream to the liver. Normally an enzyme in liver cells breaks down the bilirubin and removes it from the bloodstream. The bilirubin passes from the liver into the intestines with bile. It’s then excreted in stool. A small amount of bilirubin remains in the blood.

      When you have Gilbert syndrome, you have a lower level of the enzyme that breaks down bilirubin. Consequently, excessive amounts of a form of bilirubin called unconjugated bilirubin can build up in your blood.

      Risk factors
      Other than the chance of inheriting abnormal genes, there are no known risk factors that increase the likelihood that you’ll get Gilbert syndrome.

      When to seek medical advice
      If you notice a yellowish tinge to your skin or the normally white portions of your eyes, let your doctor know as soon as possible. A variety of conditions other than Gilbert syndrome can cause jaundice, and medical tests and exams can rule out serious illnesses.

      Check with your doctor before taking new medications and take care not to consume higher than recommended doses of acetaminophen (Tylenol, others). You may be at greater risk of liver side effects for these or other drugs.

      Complications
      Jaundice
      Gilbert syndrome can cause episodes of jaundice. However, the jaundice is usually mild and goes away on its own. There are no other known complications of the condition, and it won’t damage your liver.

      More side effects with certain medications
      The low level of the bilirubin-processing enzyme may cause increased side effects with certain medications because this enzyme helps eliminate these medications. In particular, irinotecan (Camptosar), a medication used to treat colon cancer, can reach toxic levels if you have Gilbert syndrome, causing severe diarrhea. Because of this potential effect with certain medications, talk to your doctor before taking any new medications if you have Gilbert syndrome.

      Treatments and drugs
      Because Gilbert syndrome is essentially a mild, harmless condition, it doesn’t require treatment. The level of jaundice associated with Gilbert syndrome is typically harmless as well, and goes away on its own.

      If you have Gilbert syndrome, you don’t typically need long-term monitoring of your condition or repeat blood tests. But consult your doctor if you notice worsening jaundice or other symptoms.

      If you’re concerned about jaundice, the barbiturate medication phenobarbital may reduce bilirubin levels but can have side effects such as sedation and lightheadedness.

    • Purple13 says:

      Hi Jim

      As I understand it, it’s inherited but whether it rears its head or not can depend on things like lifestyle – I’ll post more about that at the bottom.

  3. Gareth in Thailand says:

    Does this mean you won’t be purple any more?

    Not really had any surprise illnesses but I did get run over by a big van when I was 13, that was a bloody surprise. One minute out on my bike then next I came round in hospital being painted in Iodine and having the last of my clothes cut off and extracted carefully from deep wounds and grazes as well as blood being drained from my ear. Didn’t last long though as the morphine they gave me took me back off to la la land for a few more hours – every cloud has a silver lining eh?
    Took a fair while to get back to normal but being young I guess less than a year is still pretty good considering the injuries I had. The only remaining thing I have is 80% deafness in my right ear and perpetual tinnitus in the same ear caused by the fractured skull I sustained.

    Did you try getting your own back and ask the person ringing you up if they had any strange aches or pains, maybe you could have countered and said ‘sounds like you have necrotizing fasciitis’ or something, that’ll show ‘em.

    • Fertile Fish says:

      Hey GIT!

      Like the new avatar Big Fella!

      Why, you’ve changed the grey man for a, erm, grey man…….

      Brilliant Big Guy, brilliant. You’ll always be as charismatic John Major in my book.

      Snigger snigger snigger

      • Jim says:

        Grey, Purple, Yellow- all these colours here in the garden eh Fertile….is it overwhelming you yet?

      • Gareth in Thailand says:

        and you being the top of everyone’s ‘interesting fella’ list would know, churning out the same witty insults day in day out.
        Let me know when you’ve finished will you (no doubt a phrase you are used to hearing).

    • Purple13 says:

      Hi Gareth

      No – I’ll still be Purple – just not in the Barney Dinosaur sort of way.

      Nasty mean old van – I hope you managed to swear at the driver and shake your fist as you tumbled into the gutter.

  4. Lib says:

    Am I the only one amazed that the doctor didn’t tell you and you found out when you rang?

  5. Lib says:

    I’ve been quite lucky when it comes to illnesses and haven’t got anything wrong with me (I don’t think?)

    I had a bit of a scary incident last year in a French hospital but that was only temporary.

    As you all know my dad has MS (happy birthday for yesterday Bo Snr, 60) and when that was diagnosed it was more of a relief than anything as his symptoms all fell into place and we had something to call ‘it’.

  6. aussiecynic says:

    did you tell the dr off.. mate
    that is so not right…
    but I guess at least you know now and can understand what has been happening to you

  7. Purple13 says:

    Hi all and thank you for your input – suggestions for lifestyle changes and extra info. What a community.

    Just to update you i did dredge my mind for a reason for my original visit to the Doc back in 97′. I remember suffering terrible pain in the kidney region – especially after a glass of red wine (not that I drank much).

    The doctor at the time sent of blood samples but put it down to tannin’s in the red wine. Strange that I now drink tea and that also contains tannins (i hope i’m spelling that right).

    So I’m on herbal and peppermint teas for 3 months now to see if that improves my health. I’ll let you know.

    Oh and only white wine too.

    • So much more helpful when you have a diagnosis and know what to do and look for. I am so sorry that you haven’t been feeling well even though I was picking on you. I am also angry with your physician. He should have told you and given you information and provided some follow up. I hope you start feeling better and least now you have a shot at it.

  8. Purple13 says:

    Ha – well i’d thought of doing a herbal tea daily diary (like the lonely man idea) but i reasoned that entries like – got up, made peppermint tea – drank it – went to work etc were not exactly gipping reading – certainly not 3 months worth anyway – lol.

    I’ll post periodically though about the ‘tea regime’ if i notice any positive effects, other than smelling like i’ve just finished at a peppermint factory.

  9. Urban Pagan says:

    Purple

    have you considered trying a supplement called Liv52? Or Mil Thistle for the Silymarin and the POSSIBLE positive effecs it can have on the liver? Worth a shot surely?

  10. Emma says:

    Glad to know you have been diagnosed!

    Now you know, you can do something about it which is always a bonus. I have not had an illness as such diagnosed that altered how I do things, just my back. I have four and a half bones in my lower back which means there are certain things that i can’t do unless I want to end up in severe pain. One of those things is prolonged running (pew, let’s me off the gym!) and another is sitting on a hard floor.

    Knowing what causes the pain and what I can do to avoid it helps keep me out of pain most of the time so I always say it is better to know!

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