Gilbert’s Syndrome symptoms survey results

This survey of people with Gilbert’s Syndrome is the first to ask people with Gilbert’s Syndrome symptoms what they are experiencing and what is important to them. Here’s your opportunity to join this survey and add to the growing body of evidence from people with Gilbert’s Syndrome symptoms.

This survey is really important for the development of tailored information and support for people with Gilbert’s Syndrome symptoms. Thank you for your help in joining the many people who have already taken part.

The top three concerns that people with Gilbert’s Syndrome symptoms say they have:

  • 83% of respondents experience tiredness or exhaustion.
  • 69% have ‘brain fog’
  • 49% feel anxious

29% of people wanted help with nausea, 25% with the menopause, and 23% abdominal pain. Jaundice was a concern for just 11% of people.

Looking at the other responses, it’s clear that tiredness and inability to focus, plus mood swings, are part and parcel of the symptoms that are top priority for people with Gilbert’s Syndrome.

The top areas where people with Gilbert’s Syndrome symptoms have asked for support are:

Food and drink/nutrition (49%); supplements(40%); exercise(40%).

Other issues include talking to health professionals and other medication / health conditions – at 11% each.

These results will directly impact the support this website can offer people who have Gilbert’s Syndrome symptoms. Importantly by joining this survey everyone can help each other understand that they are not alone with their Gilbert’s Syndrome symptoms. Thank you for taking part, and here’s that link again if you haven’t already!

If you want to stay up to date with the latest results, support and news for people with Gilbert’s Syndrome sign up to the newsletter here. You’ll also get a FREE download of questions to ask your Doctor or health professional.

Fatigue – or how can I boost my energy?

As many as one in five people feel fatigued at any time. If you’ve been feeling exhausted then you’ll want to know: Why am I so tired all the time; how can I get more energy?

Fatigue – what is it?

Fatigue is a symptom of many health conditions and life circumstances. Technically fatigue is one or more of these:

  • Overwhelming exhaustion that lingers beyond a good night’s sleep
  • Sleepiness and a lack of motivation to move about that doesn’t go away if you rest
  • A limiting lack of energy that prevents you from getting normal tasks done
  • Feeling like your muscles are too heavy and moving about takes energy you don’t have
  • Foggy achy head, finding it difficult to think or concentrate
  • Apathy and disinterest – everything feels too much

If you feel like this for more than a few days, for a reason that’s not clear, then you must see your doctor.

Is fatigue common?

Yes! Numerous studies across different populations show fatigue is common. You can find many studies, such as this one https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5557471/ which illustrate that women tend to report fatigue more than men, and those of lower socioeconomic status also experience more fatigue. Across populations it appears above 20% of people report fatigue. 

What causes fatigue?

Excessive tiredness can be caused by simple or serious health conditions. Common deficiencies of vitamins and minerals have tiredness as a symptom. There are many life circumstances which can leave you feeling exhausted. Let’s look at a few in more detail:

Life Stage : A new baby, a new job, grief or a crisis, moving house, caring responsibilities, overwork, stress at home or in the workplace.

Medical conditions: commonly, as you can see on the NHS website, and the Mayo Clinic , conditions causing fatigue include diabetes, depression, cancer, thyroid, coeliac disease, fibromyalgia, liver problems, MS, hormonal changes, heart disease and sleep apnoea, and so many more. This is why it is so important to receive a diagnosis if you experience fatigue which doesn’t let up over time. 

Deficiencies: Iron deficiency (experienced by many women with heavy or prolonged periods), Vitamin D deficiency (common if you live in the northern hemisphere where we aren’t exposed to strong sunlight which generates vitamin D), magnesium (particularly common in women), and an imbalance in good nutrition generally. Some people have metabolic conditions which prevent them from absorbing nutrients well and this can result in multiple deficiencies.

Poor choice of foods which attack energy levels: Food high in sugar or refined carbohydrates provide instant energy. Your body will then have a crash in blood sugar which will make you feel exhausted. Wholegrains, plant based proteins, and wholefoods containing natural sugars will balance your energy levels and make you feel a whole lot better. A high intake of caffeine may also leave you struggling later in the day. (For more about the pro’s and cons of caffeine read this).

A combination of the above!

Unpicking the causes of your fatigue is really important. You must rule out serious health problems, working with your Dr.

Does Gilbert’s Syndrome cause fatigue?

For people with Gilbert’s Syndrome lack of energy is a really commonly reported symptom. I hear all the time from people desperate with debilitating exhaustion, with energy levels that are unpredictable.

There are a number of reasons why people with Gilbert’s Syndrome may feel exhausted. 

  • Reduced liver function. If you eat highly refined carbohydrates such as white bread or sugary things, your blood sugar will rise and fall a lot. This means the enzyme we’re deficient in cannot work as well as it needs blood sugar. The result is your liver won’t do its cleaning job effectively and certain toxins and bilirubin will build up in your body. Typically feelings of exhaustion, jaundice, itching and nausea are reported. You may feel a bit like you have a persistent hangover.  Of course consuming toxins may add to that effect, eg alcohol.
  • Delayed gastric emptying. Food takes longer to leave your stomach if you have Gilbert’s Syndrome. I’m sure many recognise the abdominal discomfort that entails! This has been linked to fatigue .  It is also worth noting that it is also linked to Chronic Fatigue Syndrome. Which itself has often been linked to Gilbert’s Syndrome.
  • Excess serotonin. People with Gilbert’s Syndrome have defective processing of certain neurotransmitters (chemicals that send messages around the brain and nervous system). This can lead to raised levels of Serotonin for example, which is linked to feelings of lethargy and lack of motivation as well as anxiety.

How do I get more energy?

Assuming you don’t have a particular condition or issue that is causing you to feel exhausted, then there are four simple foundations to build your energy on

  1. Good Nutrition
  2. Exercise 
  3. Good Sleep
  4. Mental resilience

The great thing about these four things is that they support each other. 

Eat well and be properly nourished and you’ll exercise better and get better sleep. Better sleep will help you be mentally resilient and give you more muscle energy for exercise. Exercise will help you be more mentally resilient etc etc 

  1. Good Nutrition. A plant based whole food diet has been overwhelmingly shown to provide you with the most sustained energy, lifespan and wellbeing. Eating a variety of plants, legumes, nuts, seeds and wholegrains will ensure you don’t need any vitamin supplements. With all food patterns you need to make sure you aren’t missing anything out. For vegans that means ensuring you get Vitamin B12. Things that will suck your energy and not enhance your wellbeing include refined sugar, other refined and processed foods. If you want the ultimate nutrition facts then dig in here nutritionfacts.org and buy the book ‘How not to die’ . I offer other thoughts on foods to eat here https://gilbertssyndrome.org.uk/the-liver-diet/ https://gilbertssyndrome.org.uk/detox-diets-and-gilberts-syndrome/ https://gilbertssyndrome.org.uk/sesame-magic-for-your-liver/ The How Not to Die cookbook has lots of tasty recipes and you can see from the reviews that many readers report increased energy.
  2. Exercise should ideally be a mix of activities that raise your heart rate and which challenge your posture and muscles both in terms of flexibility and density. Walking briskly combined with pilates (plenty free videos on youtube) are simple cost free and energising. If you aren’t up to a great deal of exercise, then just start with walking a small distance and build up. Even standing up for a while engages muscles. Adding in exercise is something that needs to become a habit or you won’t stick to it. Stand up whilst you are on the phone or watching a favourite programme, take a 20 minute walk at lunchtime, do squats in the shower or whilst brushing your teeth, dance to a favourite song for 5 minutes when you get home from work. Every bit of movement is helping you stay fit and well.
  3. Good quality sleep is vital. Research shows that our circadian rhythm (our body clock) is really important to when we feel awake and when we sleep well. Just making sure your bedroom is really dark can make a big difference to your body clock. Getting plenty of light in the morning will also help you feel alert and awake during the day and sleep better in the morning. There are lots of ways to deal with bad sleep – which I won’t go into here. It’s enough to say that regular sleep hours in a dark room without interruption are fundamental to good quality sleep. There are many books on the subject. Try the popular ‘Sleep Smarter’ by Shawn Stevenson  
  4. Mental resilience is a quality many of us feel we could develop more. It enables you to put the ups and downs of life into perspective. With mental resilience you will better cope when something bad happens in your day or your life, and will worry less about it. That’s not to say that you shouldn’t worry, be upset, grieve or be without feelings. It means you can do those natural things and then move on in time. If you want to understand more about living without anxiety you can buy ‘The Anxiety Solution’ by Chloe Brotheridge or find resources at www.calmer-you.com and Chloe’s podcast. You can also find out more about mental resilience and ‘grit’ here https://positivepsychology.com/5-ways-develop-grit-resilience/ Another great way to build up your mental resilience is through meditation. If it isn’t something you have considered or have found difficult in the past, then you could try these simple and effective tools from Mind Cards:

If you are doing the right things and are still feeling fatigued then you really need your doctor’s help to look into underlying medical conditions. 

Your personal biology will need a personalised response so that it works the best way it can for you and your circumstances. 

Sometimes this may mean prescription medication or balancing up other elements of your nutrition, supplements or lifestyle. 

Beating fatigue in Gilbert’s Syndrome

So, let’s take a look at what this might mean if you have Gilbert’s Syndrome. As mentioned, there are specific reasons you’ll feel fatigued. Everyone with Gilbert’s Syndrome will have other things going on for them too – other chronic conditions, lifestyle or life stage issues, hormonal changes etc. This means that some things may work some of the time and you may need to adjust because of what is going on for you right now. 

What you put in is key to what you get out

Many people with Gilbert’s Syndrome steer clear of alcohol as it really messes with their wellbeing and energy levels. You may want to consider this for other chemicals and potential toxins to lighten the load on your liver. This would mean a plant based wholefood diet which avoids processed and refined foods. Ideally organic! Particularly good foods include broccoli, nuts and seeds. https://gilbertssyndrome.org.uk/the-liver-diet/ . Keep it low in refined sugar and make sure to include limited good fats of plant origin. 

Drinking plenty of water will also ensure you stay hydrated and support the removal of toxins from your body. 

Eat little and often. For a couple of reasons. 

1) to maintain stable blood sugar levels 

2) with delayed gastric emptying a large meal will make you feel uncomfortable and make it harder to move about. 

This isn’t an excuse to pack in more food, unless that means eating more vegetables! Look at what you would like to eat over the day or week and portion it out. If you do it ahead of time you won’t have to think about it. 

Antidepressants in the form of SSRI’s (Selective Serotonin Reuptake Inhibitors) can help for some people. If you feel your anxiety or low mood are overwhelming then you must speak to your doctor and get their advice and diagnosis. These are also prescribed for IBS (again, something that people with Gilbert’s Syndrome have a high rate of) and may be a useful treatment option to consider – in dialogue with your doctor. This may improve your sleep, mental resilience and energy levels. However, as some people with Gilbert’s Syndrome may have raised levels of serotonin, as mentioned above, then you need to be cautious of side effects. Some brands may work better than others.

Supplements. Extra ingredients that can give you a boost or added support to your system are basically just plants in powdered form in a capsule. Some of the supplements offering additional energy balancing and support include types of ginseng, rhodiola rosea, ashwagandha etc available at Approved Vitamins and have been used safely for thousands of years. I list some supplements you can try in the Resources section. https://gilbertssyndrome.org.uk/resources/

I use rhodiola rosea and ashwagandha and have seen an impressive improvement in my ability to function. I occasionally add in gotu kola towards the end of the week or if I’ve not had a great night’s sleep, or have extra physical or mental demands. It works like a really gentle caffeine that doesn’t have the come-down effects.

Some people find caffeine works well at the right points of the day – find out more about caffeine here and let us know how it makes you feel https://gilbertssyndrome.org.uk/gilberts-syndrome-and-caffeine/

Sleep appears to be a really important factor in feeling well, when you have Gilbert’s Syndrome. A good 8 hours can make a world of difference. Some of the supplements I mention above can help sleep. Follow the suggestions in the four foundations section above. Resist the temptation to lie in bed and doze or rest without sleep. This won’t help you sleep later. Keep bed for specific night time hours if you can, and keep your sleep routine and hours regular. Being active during the day will help you sleep better later.

Anxiety can stop you sleeping and suck your energy whilst awake. If it’s overwhelming then seek help from your Dr. I mention Chloe Brotheridge’s work above, but also Mind and other websites have many pointers for help. Mindfulness is a well founded technique for calming your mind and should guarantee better sleep and more energy. You can find some free apps here. As mentioned above, these are also a really simple and effective tool to help try mediation:

I’d really like to hear what your experience is. If you follow the lifestyle above has it changed your energy levels? I found becoming vegan, eating plant based, adding in supplements and building mental resilience transformed my energy levels. What’s worked for you? Please comment. 

Remember – many people feel fatigued. There are basic principles to seize more energy. Plus – there’s the magic ingredient of you and your physiology to consider. Get medical support where needed, and understand your health conditions. You’ll then be in control of your energy and your life. 

Gilbert’s Syndrome and Caffeine

What does caffeine do for the liver, and what is the relationship between Gilbert’s Syndrome and caffeine? Many studies now combine to illustrate the positive effects of caffeine on a number of aspects of health and wellbeing.

You can help reveal the impact of caffeine on people with Gilbert’s Syndrome. Get a free download here and answer a handful of questions – it will take less than 5 minutes, and you could help us all live better with Gilbert’s Syndrome. Thank you!

Naturally, it’s not a simple picture.  Everyone has a different genetic and metabolic profile (we’re all made differently!). Each individual has a unique way of processing any chemical or food. This can also be impacted by your lifestyle, age and even time of the month. My goal is to help you personalise your nutrition so that you can take the research, advice and your experience and see what works best for you.  

I’ve been through the research and summarize and link to it below. This post also gives you the benefit of looking through the science as it relates to Gilbert’s Syndrome, but ultimately – I am not a doctor, I am not YOUR doctor, and the best expert on you – is YOU. 

That said, let’s look at liver health and caffeine, and particularly Gilbert’s Syndrome and caffeine

As Professor Graeme Alexander President, British Association for the Study of the Liver Consultant Hepatologist at Cambridge University Hospitals and The Royal Free Hospital, London said, in a study published by the British Liver Trust in 2016, “At last, liver physicians have found a lifestyle habit that is good for your liver!’

The report pulls together studies that look at liver diseases which are developed or acquired, not genetic conditions that impact the liver, like Gilbert’s Syndrome. However, it’s worth looking at the conclusions and the basis of the studies to see what we can draw from those. 

The bottom line is that it appears caffeine can slow disease progression, help prevent liver cancer and support the anti-viral functions of the liver. 

Other conditions also show a beneficial impact, such as diabetes and stroke. 

‘eighteen studies involving almost half a million people that show overall that coffee, decaffeinated coffee and tea do slightly reduce risk of diabetes.’

One stunning assertion from a study in the report showed that :

‘Coffee appears to have a significant effect on all-cause mortality. The National Institutes of HealthAmerican Association of Retired Persons Diet and Health Study involving 229,119 men and 173,141 women demonstrated an inverse relationship between coffee consumption and mortality. In other words, coffee drinkers had a reduction in mortality compared with non-coffee drinkers.’

Any old caffeine? 

Some of the questions raised include the benefits of tea (or other caffeinated beverages) versus coffee. It appears that coffee itself contains beneficial compounds (particularly those found in the green beans) that other caffeinated drinks do not. And that decaffeinated coffee can have some benefits associated with coffee drinking. 

How much should I drink?

Rightly cautious advice about drinking too much coffee or consuming too much caffeine is flagged. Too much caffeine can have an adverse effect on other conditions, from pregnancy to conditions where medication might be impacted. The difference between men and women is only really significant if you are taking hormonal supplements or, as mentioned, you are pregnant. A moderate 2 to 3 cups a day is suggested by the report authors. 

One factoid of interest – caffeine metabolisation is twice as fast in smokers as non-smokers.

Coffee Caution

Everybody reacts differently to substances and caffeine is itself quite a powerful stimulant. If you have anxiety or depression then do NOT suddenly start drinking lots of coffee! It raises levels of stress hormones adrenaline and cortisol. Plus, it can raise blood pressure. 

Although coffee can enhance energy and alertness, it can also trigger certain conditions, and decaffeinated coffee might provide some benefits without the downsides for people who react strongly to caffeine. However, as noted in Medical News Today In 2013, a study published in World Journal of Biological Psychiatry suggested that drinking between 2–4 cups of coffee a day may reduce suicide risk in adults.

Caffeine is in fact a psychoactive substance and should not be overused. Most studies suggest that more than 400mg of caffeine a day could have adverse effects (probably more than 4 cups of coffee). Plus, as well as the caution for pregnant women, there is a lack of information about how it can impact the growing, changing and susceptible brains of children and adolescents. 

If you would like to read the studies and explore the associated articles on this, then do read the report. https://britishlivertrust.org.uk/wp-content/uploads/The-health-benefits-of-coffee-BLT-report-June-2016.pdf

You can also watch this video from Dr Greger at nutrition facts (buy his excellent book ‘How Not to Die’ which looks at many health conditions and how to optimise your diet to live longer and better).

Dr Greger rightly raises the fact that people metabolise coffee / caffeine very differently. This different metabolisation can result in very different responses, harms and benefits. 

Gilbert’s Syndrome and Caffeine

In the catchily titled piece of scientific research: Caffeine Clearance in Subjects With Constitutional Unconjugated Hyperbilirubinemia

The abstract concludes: ‘CAF altered kinetics in 27% of GS cases may suggest multiple deficits in the hepatocellular metabolism, thus confirming the heterogeneity of this syndrome.’

Ie. caffeine altered the reaction rates in 27% of Gilbert’s Syndrome cases, suggesting that the liver wasn’t processing as well, demonstrating (once again) that Gilbert’s Syndrome has different elements or characteristics. 

(It didn’t seem to impact bilirubin levels or bile acids, though.)

As with many studies into Gilbert’s Syndrome, the conclusions note that there are in fact differences in how our livers process things. But, as is so often the case, this is not taken further, to examine just what that means to the lifestyle management for someone with Gilbert’s Syndrome. 

The implication here is that people with Gilbert’s Syndrome might find coffee or caffeine impacts them negatively, and I’ve written elsewhere how coffee or caffeine can impact energy levels in a way that you may find unhelpful. Stable energy levels and blood sugar are important for the liver enzymes we are deficient in to work properly. We can also experience anxiety as a symptom. These both suggest we would need to be careful around our coffee / caffeine consumption. 

Of course, energy levels can also be an issue if you have Gilbert’s Syndrome. Fatigue is a common symptom of Gilbert’s Syndrome. It would be great to be able to reach for caffeine as a pick me up, to break through that brain fog and boost your concentration!

What caffeine to try when you have Gilbert’s Syndrome

If you want to try caffeine in a different format to coffee, this myprotein drink includes caffeine plus protein and vitamin B6 which can help supplement energy levels too.

Another option is a green coffee bean supplement, this one has additional ingredients to add to the energy boost.

If you don’t want the caffeine, but want the protective elements of green coffee beans (which appear to have the most beneficial compounds), then try this decaffeineated version.

If you want to explore alternatives to coffee then there are other natural stimulants which are more gentle which may help with your energy levels. I take adaptogens to balance my energy levels, you can find a range of supplements here at Approved Vitamins , such as Ashwagandha and Rhodiola (I only use Viridian Maximum Potency Rhodiola ), plus gotu kola which can provide an extra, but gentle, boost that can help concentration levels when they start to flag. I recently tried this one and it works a treat for giving me a gentle pick me up:

Nature’s Answer, Gotu Kola, 950 mg, 90 Vegetarian Capsules

I personally find coffee or caffeine makes me feel quite unwell. I don’t seem to metabolise it comfortably and it leaves me feeling frazzled and sick. I’d love to hear more about whether you find coffee or caffeine helps you, and what your experiences are with it. Please do comment and share your story here. 

This website is dedicated to helping people like you live better with Gilbert’s Syndrome, I hope you find the information interesting and useful – if you do, please consider donating to keep it going. Because so many people struggle to find help and support to live with Gilbert’s Syndrome, please donate today – THANK YOU!

Jaundice

WHAT IS JAUNDICE?

The word “jaundice” comes from the French word jaune, which means yellow.

Jaundice is a yellowish staining of the skin, the whites of the eyes, and mucous membranes by bilirubin, a yellow-orange bile pigment. Bilirubin (read more about it here!) comes mainly from the breakdown of red blood cells, and is basically a waste product that your liver gets rid of.

Jaundice usually appears when the bilirubin in your blood is more than 3 mg per dL (51.3 µmol per L). The classic definition of jaundice is a serum bilirubin level greater than 2.5 to 3 mg per dL (42.8 to 51.3 µmol per L) as well as having yellow skin and eyes.

Your body processes bilirubin in 3 phases: prehepatic (before it gets to the liver), intrahepatic(whilst in the liver), and posthepatic(after leaving the liver). If any of these aren’t working properly you can become jaundiced.

PREHEPATIC

The human body produces about 4 mg per kg of bilirubin per day, from the breakdown of blood cells. Bilirubin is then transported from to the liver for conjugation (where it needs to link up with other enzymes and chemicals so that it can be removed from the body) .

INTRAHEPATIC

Unconjugated bilirubin (the bilirubin that hasn’t been removed by linking up with an enzyme) doesn’t dissolve in water but is soluble in fats. That means it can easily cross the blood-brain barrier or enter the placenta. The unconjugated bilirubin is conjugated (linked up with) with a sugar via the enzyme glucuronosyltransferase (the enzyme that people with GS don’t have enough of) and is then soluble in the bile.

POSTHEPATIC

Once soluble in bile, bilirubin is transported through to the gallbladder, where it is stored, or passed on to the duodenam. Inside the intestines, some bilirubin is excreted in the stool, while the rest is dealt with by the bacteria in your gut.

JAUNDICE AND OTHER SYMPTOMS

Some people with jaundice have no symptoms at all.  But some may have an acute illness, which is frequently caused by infection, may seek medical care because of fever, chills, abdominal pain, and flu-like symptoms. For these patients, the change in skin color may not be their greatest concern!

Patients with noninfectious jaundice may complain of weight loss or itching / skin discomfort. Abdominal pain is the most common symptom in patients with pancreatic or biliary tract cancers.Even something as nonspecific as depression may be a symptom in patients with chronic infectious hepatitis and in those with a history of alcoholism.

‘False’ jaundice can happen if you eat foods rich in beta-carotene (e.g., squash, melons, and carrots). Unlike true jaundice, you don’t get yellow eyes, or changes in bilirubin level.

CAUSES OF JAUNDICE:

PREHEPATIC CAUSES

Unconjugated hyperbilirubinemia (this is when you’ve too much bilirubin in your bloodstream because it’s not been processed in the liver, as in Gilbert’s Syndrome) might happen before bilirubin has entered the liver cells or within the liver cell. If you’ve had an unusual breakdown in your red blood cells then there may be too much of the waste product, bilirubin, for your liver to process as normal.

This will usually result in mild bilirubin elevation, to about 5 mg per dL (85.5 µmol per L), with or without clinical jaundice. The blood might be breaking down because of a number of causes in the blood cells or your enzymes which mean your red cells have stayed alive longer than normal, and built up.  Other causes include autoimmune disorders, drugs, and defects in hemoglobin structure such as sickle cell disease and the thalassemias.

INTRAHEPATIC CAUSES

Un-Conjugated Hyperbilirubinemia Gilbert syndrome is a common, benign, hereditary disorder that affects approximately 5 percent of the U.S. population. It usually results in a mild decrease in the activity of the enzyme glucuronosyltransferase. Gilbert syndrome is typically an incidental finding on routine liver function tests, when the bilirubin level is slightly increased and all other liver function values are within normal limits. Jaundice and further elevation of the bilirubin level may occur during periods of stress, fasting, or illness.

Conjugated Hyperbilirubinemia. Main causes are when there’s a blockage preventing bilirubin from moving into the intestines. Viruses, alcohol, and autoimmune disorders are the most common causes of hepatitis. Inflammation also disrupts transport of the bilirubin and causes jaundice.

Hepatitis A can cause acute onset of jaundice. Hepatitis B and C infections often do not cause jaundice straight away, but can lead to jaundice when chronic infection has led to liver cirrhosis. Epstein-Barr virus infection occasionally causes hepatitis and jaundice that resolve as the illness clears.

Alcohol has been shown to affect bile acid uptake and secretion, stopping the normal flow through the liver. Chronic alcohol use may result in fatty liver (steatosis), hepatitis, and cirrhosis, with varying levels of jaundice. Fatty liver, the most common liver problem, usually results in mild symptoms without jaundice but occasionally progresses to cirrhosis. Hepatitis secondary to alcohol use typically presents with acute onset of jaundice and more severe symptoms.

More rare conditions that can cause jaundice: Autoimmune hepatitis traditionally has been considered a disease that affects younger persons, especially women. Two serious autoimmune diseases that directly affect the biliary system without causing much hepatitis are primary biliary cirrhosis and primary sclerosing cholangitis. Primary biliary cirrhosis is a rare progressive liver disease that typically presents in middle-aged women. Fatigue and itching / skin discomfort are common initial complaints, while jaundice happens later. Primary sclerosing cholangitis, which is also rare, is more common in men; nearly 70 percent of patients also have inflammatory bowel disease. Dubin-Johnson syndrome and Rotor’s syndrome are rare hereditary metabolic defects that disrupt transport of conjugated bilirubin.

Common drugs can also cause problems, such as acetaminophen, penicillins, oral contraceptives, anti-psychotic medication, and steroids. Cholestasis can develop during the first few months of oral contraceptive use and may result in jaundice.

POSTHEPATIC CAUSES

Gallstones in the gallbladder are fairly common in adults. Obstruction within the biliary duct system can inflame the gallbladder, and can lead to infection. Cholangitis is diagnosed clinically by the classic symptoms of fever, pain, and jaundice, known as Charcot’s triad. Cholangitis most commonly occurs because of an impacted gallstone, which might then be removed.

Biliary tract tumors are uncommon but serious causes of posthepatic jaundice. Gallbladder cancer classically presents with jaundice, enlarged liver, and a mass in the right upper quadrant (Courvoisier’s sign). Another biliary system cancer, cholangiocarcinoma, typically manifests as jaundice, itching / skin discomfort, weight loss, and abdominal pain. It accounts for roughly 25 percent of hepatobiliary cancers.

Jaundice also may arise with pancreatitis. The most common causes of pancreatitis are gallstones and alcohol use. Gallstones are responsible for more than one half of cases of acute pancreatitis, which is caused by obstruction of the duct that drains the biliary and pancreatic systems.

Evaluation

The initial work-up of the patient with jaundice depends on whether the hyperbilirubinemia is conjugated (direct) or unconjugated (indirect). A urine anlysis that is positive for bilirubin indicates the presence of conjugated bilirubinemia. Conjugated bilirubin is water soluble and so passed through urine.

SO IF YOU’RE JAUNDICED WHAT DO THEY DO TO WORK OUT WHAT’S CAUSING IT? Here’s the clinical information :

BLOOD TESTING

First-line serum testing in a patient presenting with jaundice should include a complete blood count (CBC) and determination of bilirubin, aspartate transaminase (AST), alanine transaminase (ALT), gamma-glutamyl transpeptidase, and alkaline phosphatase levels.

Depending on the results of the initial tests, further serum tests or imaging studies may be warranted. The second-line serum investigations may include tests for hepatitis A IgM antibody, hepatitis B surface antigen and core antibody, hepatitis C antibody, and autoimmune markers such as antinuclear, smooth muscle, and liver-kidney microsomal antibodies. An elevated amylase level would corroborate the presence of pancreatitis when this condition is suspected based on the history or physical examination.

IMAGING

Ultrasonography and computed tomographic (CT) scanning are useful in distinguishing an obstructing lesion from hepatocellular disease in the evaluation of a jaundiced patient. Ultrasonography is typically the first test ordered, because of its lower cost, wide availability, and lack of radiation exposure, which may be particularly important in pregnant patients. While ultrasonography is the most sensitive imaging technique for detecting biliary stones, CT scanning can provide more information about liver and pancreatic parenchymal disease. Neither is good at finding stones inside the ducts.

Further imaging that may be done by a gastroenterologist or interventional radiologist includes endoscopic retrograde cholangiopancreatography and percutaneous transhepatic cholangiography.

LIVER BIOPSY

A liver biopsy provides information on the architecture of the liver and is used mostly for determining prognosis. It also may be useful for diagnosis if serum and imaging studies do not lead to a firm diagnosis. Liver biopsy can be particularly helpful in diagnosing autoimmune hepatitis or biliary tract disorders (e.g., primary biliary cirrhosis, primary sclerosing cholangitis).

Glucuronidation – where Gilbert’s Syndrome works in your liver

Glucuronidation
The UGT enzyme (that people with Gilbert’s Syndrome don’t have so much of) works in one particular part of your liver and is responsible for the part (or pathway) of your liver’s processing called ‘glucuronidation’. Glucuronidation happens when toxins are bound to glucuronic acid which is produced by the liver. Chemicals processed by glucuronidation include common opiate based drugs used in pain relief or during surgery  (Liston, H.; Markowitz, J.; Devane, C. (2001). “Drug glucuronidation in clinical psychopharmacology”. Journal of clinical psychopharmacology). Other things that affect glucuronidation include smoking, obesity, age and gender.

You can find a list of drugs affected here: https://en.wikipedia.org/wiki/Glucuronidation#General_influencing_factors

Some herbal supplements may help glucuronidation (Effects of herbal supplements on drug glucuronidation. Review of clinical, animal, and in vitro studies. March 2011 Mohamed ME, Frye RF.Department of Pharmacotherapy and Translational Research, College of Pharmacy, University of Florida, Gainesville, Florida 32610, USA.)The use of herbal supplements has increased steadily over the last decade. Recent surveys show that many people who take herbal supplements also take prescription and nonprescription drugs, increasing the risk for potential herb-drug interactions. In vitro and animal studies indicate that cranberry, gingko biloba, grape seed, green tea, hawthorn, milk thistle, noni, soy, St. John’s wort, and valerian are rich in phytochemicals that can modulate UGT enzymes. However, the IN VIVO consequences of these interactions are not well understood. Only three clinical studies have investigated the effects of herbal supplements on drugs cleared primarily through UGT enzymes. The need for further research to determine the clinical consequences of the described interactions is highlighted.

Essential for Glucuronidation are the nutrients L-glutamine, aspartic acid, iron, magnesium, B3 (niacin) and B6. Thyroid should also be adequate. Cruciferous vegetables (cauliflower, cabbage, cress, bok choy, broccoli and similar green leaf vegetables) are helpful. Glucuronidation efficiency can be improved by calcium-d-glucarate. However, you have to start very gradually with the calcium-d-glucarate, and be very consistent.

You can find out more about glucuronidation here https://youarethehealer.org/health-conditions/optizmize-your-health/detox-biotransformation-pathways/glucuronidation/

Itching and Gilbert’s Syndrome

Many people who have Gilbert’s Syndrome experience itching, which doesn’t seem to be related to any obvious cause and has no visible rash.  I myself have been through the obvious checklist many times: washing powder; cosmetics; food; perfume, but nothing had ever changed as, knowing I itch at the drop of a hat, I’m very careful regarding anything I could be allergic to.

BUT…what if it isn’t any kind of allergy?

The idea never occurred to me  until Adina let me know that it was a query that had come up several times with Gilbert’s Syndrome sufferers.  I have had a look at the information available to the general public and here are some of the interesting facts I found on the subject:-

www.nhsdirect.nhs.uk states that “general itching may be a symptom of many conditions, including…some condition affecting your liver…”  The conditions mentioned include more serious liver conditions than GS in terms of prognosis but this doesn’t rule it out as is it not stated that itching is not a GS syptom.

www.netdoctor.co.uk says of primary biliary cirrhosis that the symptoms are identical to any other chronic liver problem – itching, aches and low energy.  Chronic means long term, Gilbert’s Syndrome is a chronic liver problem, so again, this is indicative that the itching we experience is a symptom of our GS.

I also found some information on the British Liver Trust website (www.britishlivertrust.org.uk) that may explain WHY itching occurs in GS, through an explanation of a different liver condition:-

Itching is stated as a symptom of cholestasis, which is a reduction in the flow of bile from the liver.  This causes bile salts to build up in the blood, be deposited in the skin and cause itching.  Bilirubin increases are suggestive of problems with the bile duct.  Gilbert’s Syndrome is diagnosed due to a long term increase in bilirubin, also classified as ‘bile level’ in blood tests of liver function.

In Gilbert’s Syndrome bilirubin is raised due to lack of an enzyme rather than a blockage of the bile duct.  It was not clear to me from the information I had found so far if an increase in bilirubin goes hand in hand with an increase in bile salts or whether the two are mutually exclusive.  So I read further…

I found quite a lot of work which links bilirubin and bile salts, for example www.revision-notes.co.uk/revision/859.html , in describing the process of bile secretion, states of bile “It is an alkaline, mucous fluid containing bile pigments, biliverdine and bilirubin.  Bile also contains bile salts…”

However, I have not been able to find anything that specifically states that bile salt levels are raised in Gilbert’s Syndrome or whether bilirubin can be increased without bile salts being raised.  It is always stated that of all liver function tests only bilirubin is raised in GS which suggests levels of bile salts are normal, although I do not know if this is tested separately.  If this is the case it is possible that bile salts may fluctuate, even if within normal limits at testing, causing itching on occasion but not constantly.  This is pure speculation but I hope gives us something to think about and ask our GPs next time we have a consultation.

By contributor Nicola Southworth

The menopause as a trigger of Gilbert’s Syndrome symptoms

One of the major roles of the liver is to process hormones.  It is therefore not irrational to suppose that the menopause may have some effect on a woman’s experience of Gilbert’s Syndrome (and vice versa) due to the enormous hormonal changes and fluctuations that cause it.

During the menopause the ovaries are less able than before to respond to the pituitary hormones follicle stimulating hormone (FSH) and luteinising hormone (LH), and so less oestrogen is produced.  Due to the reduction of oestrogen production some androgens that are still produced by the adrenal glands, such as testosterone, are not overridden as they were before the onset of the menopause.

This means there is a major shift in the balance of hormones in the body, with an increase of FSH, LH and androgens for the liver to process.

Scouring the recently published scientific research I could not find any article that had investigated the effects of these changes on people with liver conditions.  Common sense suggests that these changes would be an immense shock to the liver (we only have to look at all the other effects on the body to understand that this is a huge physical change).  As the liver metabolises hormones and deactivates them when they are no longer useful, it has an increased workload with the excess FSH, LH and androgens.  It seems highly possible that this extra strain on the liver of someone with Gilbert’s Syndrome would bring to the fore Gilbert’s Syndrome symptoms that had not previously been recognised when the liver was used to the hormonal balance of the body.

Many symptoms of the menopause and of Gilbert’s Syndrome are very similar and so these symptoms may be enhanced in someone with Gilbert’s Syndrome.  For example, the insomnia or disrupted sleep caused by other menopause symptoms, such as hot flushes, can lead to fatigue and generalised aches and pains, common symptoms of Gilbert’s Syndrome.  Other symptoms common to both include dizziness and difficulty with cognitive tasks, such as concentration and memory.

Finally, a word about medication.  The most commonly used treatment to ease the effects of the menopause is HRT.  As yet, we are not fully aware of the exact effects many medications have in relation to GS.  We know some medications are processed differently by GS sufferers and so anyone taking any medication who has GS should be aware of this.  There is evidence that HRT can affect bile composition (http://hcd2.bupa.co.uk), which may have implications for GS sufferers.  It may, therefore, be worth being aware of these scant facts when consulting the GP, in order for them to give the best possible advice for the individual.

Unfortunately, as yet, there are no answers to the dual problem of the menopause with Gilbert’s Syndrome, apart from the advice to everyone with Gilbert’s Syndrome: to do everything in our power to reduce the workload of our liver

(originally written by contributor Nicola Southworth)

The Liver Fortifying Diet

The liver fortifying diet:

Cut down on the alcohol, salt, caffeine, tobacco, medication, sugar, and fat and stock up on these goodies.  Your liver will love you.

Essential Vitamins and Minerals

Vitamins C and E and minerals zinc and selenium are ‘antioxidants’ shown to aid liver healing. Sources include carrots, tomatoes, peppers, watercress, citrus fruits, berries, wholegrains seeds and oils.

B vitamins and choline are found in egg yolks, liver, legumes and brewer’s yeast and can help liver function.  Make sure your diet contains plenty of green leafy veg rich in folic acid, wholegrains and shellfish rich in vitamin B6, and vitamin B12 foods such as fortified cereals, seafood and seaweed.

 Cruciferous Veg.

Members of the cabbage family have been shown to activate the liver’s cytochrome P450 detoxification process and glutathione conjugation.  In plain English – a process that converts fat-soluble toxins into water-soluble ones, more easy for your body to get rid of.

broccoli cauliflower cabbage
food good for Gilbert's Syndrome

Try include broccoli, cauliflower, kale, mustard greens, radish, brussel sprouts and cabbage in your diet.

Sulphur rich foods.

Garlic, onions, eggs and legumes are rich in sulphur.  They can enhance the sulphuration detoxification process performed by the liver.

Detoxing superfoods.

You should add red fruits, berries, beetroot, and grapes to your diet, as these all help the liver to detoxify and are high in toxin fighting anthrocyanidines.  Papayas and pineapple contain useful enzymes to improve digestion and lemons have a strong cleansing effect.

Helpful Herbs.

Milk thistle, dandelion, turmeric and liquorice have all been shown to aid liver function.  Ginger is also an excellent cleanser.

Good Protein.

The liver needs protein to repair itself, and a diet high in protein gives some people with Gilbert’s Syndrome more energy.  Choose healthy alternatives to red meat such as fish, nuts, pulses and seeds as they are easier to break down and place less of a burden on your liver.

Water.

Once your liver has removed the toxins from your body, you must flush them out of your body.  The only way to do this is to drink lots of water.  Three pints or eight glasses a day minimum!  Although you may find this no problem as some sufferers have expressed how thirsty they seem these days.

itchy skin

Do you find a side of effect of your GS is itchy skin?  A lot of us experience it.  One suggestion why this might happen is that your skin, as the bodies 2nd largest detoxification organ after your liver, is trying to help your ailing liver in the detox process.  Here’s a couple of tips that might help – 1) Skin brushing before your morning shower or bath helps to stimulate circulation and encourage detoxification.  Brush towards your heart using firm strokes. 2) If you’ve over indulged and your liver is struggling, swapping your morning-after coffee with a cup of nettle or dandelion tea will replace lost minerals and support your liver’s detoxification process.