Tag: Gilbert’s Syndrome symptoms

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Gilbert’s Syndrome and Heart Disease

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Gilbert’s Syndrome protects against the leading cause of death globally. 

Here’s reason to celebrate for people with Gilbert’s Syndrome! One benefit of this genetic enzyme deficiency is a reduction in heart and cardiovascular problems. Heart disease is responsible for a third of deaths globally and rates are increasing.

For decades studies have shown that Gilbert’s Syndrome provides some protection from heart disease.  Recent  studies looking at differences for different populations. These validate the finding of reduced heart disease in those with consistently raised bilirubin levels and look deeper at other factors. 

Here you can find out more about why. Plus – why it doesn’t pay to think this means you can indulge in an unhealthy lifestyle. 

Why does Gilbert’s Syndrome protect people against death related to heart disease?

According to research, people with consistently higher levels of bilirubin in their blood lay down less fat in arteries. They are less likely to have thrombosis, and may have lower blood pressure. 

Raised levels of bilirubin in the bloodstream is one symptom of Gilbert’s Syndrome. Find out more here: https://gilbertssyndrome.org.uk/what-is-gilberts-syndrome/bilirubin/  . The enzyme people with Gilbert’s Syndrome are deficient in processes bilirubin, as well as other things in the body. This means we’ve got more bilirubin hanging around in our blood than most people. 

This study from 2002 https://pubmed.ncbi.nlm.nih.gov/11849670/ proposes that bilirubin acts as an antioxidant and protects arteries. This 2017 research discusses similarly how bilirubin levels in Gilbert’s Syndrome can reduce the levels of fats in arteries https://pubmed.ncbi.nlm.nih.gov/28300459/ . This 2013 published study notes that people with GS have less fat in their bodies more generally, as well as laid down in their arteries! https://pubmed.ncbi.nlm.nih.gov/23201182/ Thrombosis is less likely with raised bilirubin levels. 

This piece from 2018 https://journals.physiology.org/doi/full/10.1152/ajpheart.00417.2017 shows that aerobic exercise raises bilirubin levels. Athletes may have continuously raised bilirubin levels due to the regularity of their exercise. https://journals.physiology.org/doi/full/10.1152/ajpheart.00417.2017 : People with Gilbert’s Syndrome and people who exercise experience the benefits of raised bilirubin levels on their cardiovascular health. Higher bilirubin levels are also linked to lower systolic blood pressure measurements. 

How amazing is this!

‘Mildly elevated total bilirubin is consistently associated with reduced incidence of all-cause mortality (34). Remarkably, GS approximately halves all-cause mortality compared with normobilirubinemic controls (33).’

Does this mean people with Gilbert’s Syndrome live longer?

Well, it’s more complicated than that as this article attempts to explain. In short, there’s no evidence that is the case. If you read through the article you can also read more about the potential link of GS with UTI’s, gastric delayed emptying and issues with certain medications. 

https://academic.oup.com/ehjopen/article/3/3/oead059/7193306

This most recent research goes through other studies on millions of individuals. Excitingly it brings together a wide range of data to draw from, making it more robust than those studies observing far fewer individuals. 

‘We report significant findings: (i) White individuals with GS consistently exhibited protective effect as they aged, and furthermore its magnitude increased with age (due to small sample sizes, we could not determine this effect in Black subgroups); and (ii) mean total bilirubin remained constant despite increase in protective effect magnitude with age.’ 

(Although the effect was less in women than in men. )

I can just put my feet up and eat fast food then?

So, it looks like people with Gilbert’s Syndrome are less likely to have cardiovascular (CVD) disease. However, I know people with Gilbert’s Syndrome and who have had cardiovascular problems. Just because there is increased protection does not mean you are completely protected. We’re less likely to die a death related to CVD, but we may experience angina, or heart attacks etc. This means we may need to be prescribed drugs like statins. It’s important to know that such drugs need to be monitored, as they aren’t well processed by people with Gilbert’s Syndrome.

The UK’s National Institute for Health and Care Excellence, which is the body that prescribes how our health services standards should function, says of Gilbert’s Syndrome and statins: 

  • Be aware that certain drugs should be used with caution in people with Gilbert’s syndrome.
    • Gemfibrozil — inhibits uridine diphosphate (UDP)-glucuronyl transferase, the enzyme responsible for conjugation, and can cause variable hyperbilirubinaemia and jaundice.
    • Statin — people with Gilbert’s syndrome may have an increased risk of statin intolerance and should be monitored more closely while taking them. 
    • Gemfibrozil plus a statin — concurrent treatment with gemfibrozil plus a statin is contraindicated in all people due to an increased risk of myopathy.
      • In people with Gilbert’s syndrome, this interaction is further accentuated as glucuronidation is an important pathway for the metabolism of some statins and that pathway is compromised in people with Gilbert’s syndrome.
      • Simvastatin, atorvastatin, and rosuvastatin are only partially metabolized by UDP-glucuronyl transferase, but when combined with gemfibrozil, there is an increased risk of drug toxicity, including myositis.
      • If concurrent treatment with a fibrate and a statin is required, fenofibrate is a safer option than gemfibrozil but should still be used with caution.

https://cks.nice.org.uk/topics/gilberts-syndrome/management/management/

Finally – if you want to live a healthy happy life with Gilbert’s Syndrome, then your lifestyle is less likely to cause you heart disease. Eating plenty of fruit and veg for lots of fibre, vitamins and minerals, low fat wholegrains to balance your blood sugar, nuts, seeds, soya protein, broccoli and lots of other good things (find out more here https://gilbertssyndrome.org.uk/the-liver-diet/  ) will ensure you maximise your heart health. This is important due to the issues with prescribing cholesterol lowering medication. 

With the sort of lifestyle that ensures you maintain optimum health with Gilbert’s Syndrome, you’ll be even more protected against the world’s biggest killer. 

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Banish your Gilbert’s Syndrome Brain Fog

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Here you’ll find out what brain fog is and its causes. Why is brain fog a Gilbert’s Syndrome symptom? How you can banish brain fog with short, medium and long term tactics. I’ll also signpost you to more help if you need it. Read on!

What is brain fog

‘Brain fog’ describes a collection of different sensations that you feel in your head. Feeling fuzzy or that your thinking is unclear; inability to collect your words and express yourself clearly and concisely; losing the thread of your thoughts; forgetting something a moment after having thought it; disorientation or even dizziness; being easily distracted; a feeling of fatigue or tiredness that isn’t in your muscles.

There are many reasons you might have brain fog

Common causes of brain fog

  • Vitamin deficiency such as Vitamin D or B12, or lacking iron. 
  • Hormonal changes such as during puberty, the menstrual cycle, pregnancy or menopause. 
  • Low blood pressure.
  • Long term poor sleep quality.
  • Long term stress or depression.
  • Mental health conditions or neurodiversities such as schizophrenia or ADHD
  • Caffeine withdrawal. 
  • Alcohol dependency
  • Medication, including antihistamines or other over the counter meds such as cold remedies, as well as prescribed medications or medical treatments such as for pain or cancer. 
  • Medical conditions such as hypermobility, chronic fatigue, diabetes, multiple sclerosis, thyroid problems, Gilbert’s Syndrome and many more. 
  • Shift work.
  • Allergies or sensitivities to particular foods.
  • Environmental toxins and chemicals.
  • Trauma.

Why would Gilbert’s Syndrome in particular cause brain fog? 

There’s no definite reason we have brain fog with Gilbert’s Syndrome, but it is a recognised symptom. Let’s take a look at some pieces of scientific research examining bilirubin as a neurotoxin and its ability to pass through the blood brain barrier.

Jaundice and brain fog – Is bilirubin toxic to the brain?

If you have Gilbert’s Syndrome then you produce too much unconjugated bilirubin from time to time. And, yes, this bilirubin is a neurotoxin. But in adults this should cause little problem unless there are excessive levels of bilirubin that are life threatening. Excessive levels of bilirubin are not a part of Gilbert’s Syndrome. Gilbert’s Syndrome produces mild to moderate rises in bilirubin levels.

The science stuff:

Babies can have high levels of bilirubin just after birth, and their brains are not developed to process it the way adults are. This is why bilirubin can be dangerous to newborns. Adult brains have ways to deal with the bilirubin that prevent it from causing damage.  This is noted in the extract from a piece of research below. 

https://pubmed.ncbi.nlm.nih.gov/11001835/

However, because bilirubin is neurotoxic, hyperbilirubinemia in the newborn may exceptionally result in death in the neonatal period, or survival with severe neurological sequelae (kernicterus). Bilirubin enters the brain through an intact blood-brain barrier. Clearance of bilirubin from brain partly involves retro-transfer through the blood-brain barrier, and possibly also through the brain-CSF barrier into CSF. Work in our lab during the past 5 years has substantiated earlier work which had suggested that bilirubin may also be metabolized in brain. The responsible enzyme is found on the inner mitochondrial membrane, and oxidizes bilirubin at a rate of 100-300 pmol bilirubin/mg protein/minute. The enzyme activity is lower in the newborn compared with the mature animal, and is also lower in neurons compared with glia.

https://www.sciencedirect.com/science/article/abs/pii/S0188440914002641

This article notes some of the effects of Uncojugated Bilirubin (UCB) on the barrier of the brain. The tests are in an artificial environment not actual people. They do note that long term exposure to high levels can cause neurological damage. However, in Gilbert’s Syndrome the levels wouldn’t be high enough for long enough:

In spite of the increased awareness of UCB effects to brain cells (Brites and Brito, 2012), knowledge about its passage across the endothelial monolayer, the rate in which this passage is achieved, and its effects on the integrity of the brain endothelial barrier is scarce …

In conclusion, our data demonstrate that UCB impairs barrier function in an in vitro model of the human BBB. Interestingly, this interaction involves dual effects that depend on the time of incubation, with early transcytosis and late paracellular pathways facilitating UCB entrance into the brain (Figure 8). Collectively, these results underscore the need of prompt clinical intervention in cases of lasting hyperbilirubinemia to prevent BIND and related irreversible CNS damage.

https://www.frontiersin.org/articles/10.3389/fncel.2012.00022/full

As this piece notes, there are other enzymes in the adult brain that protect the brain from neurotoxic effects: 

Owing to its lipid soluble nature, bilirubin may cross the blood-brain barrier and thus enter the brain. Its clearance from the brain is ensured by the presence of an enzyme on the inner mitochondrial membrane, which aids in the oxidation of bilirubin, thus protecting against its neurotoxic effects. The mechanism of toxicity is yet obscure, but bilirubin has a higher affinity to settle in glia and neurons.

https://www.ncbi.nlm.nih.gov/books/NBK544252/

The question is – does the effect of higher bilirubin result in sensations of brain fog, although it doesn’t appear to cause long term damage? The studies don’t appear to answer that explicitly. Bilirubin might be a factor. If you manage your Gilbert’s Syndrome and have fewer episodes of raised bilirubin this should hopefully lead to less brain fog.

Solutions

If you’ve been experiencing a long term episode of brain fog it’s a good idea to go to see your health professional. I experienced brain fog and disorientation which I thought was Gilbert’s Syndrome at first. After a couple of weeks I went to see my Doctor. It turned out to be a vitamin deficiency and I got better after a week or two of treatment.

If you are experiencing a symptom flare up, or regular episodes, then you could try a number of things that might help relieve the symptoms. (Please do always consult your Doctor if your symptoms are unusual. I’m not a medical Doctor and I am not qualified to provide medical advice. )

Quick(er) fixes

Hydration! Ok, so it’s really true that a lot of people just don’t drink enough and this directly affects your ability to think. If you are feeling sluggish a glass of water could be the simple answer. 

Nutrition – I have already mentioned that some deficiencies can cause problems. If you’ve had a long episode of brain fog that isn’t going away then do see your Doctor. This is particularly important if you take medication that can prevent you absorbing vitamins.

There are lots of foods that can optimise your health and brain health especially. I talk more about specific foods below. A balanced plant predominant wholefood diet is the best for overall health. This reduces junk highly processed foods that can cause you to feel generally unwell over time. 

Alcohol, sugar and caffeine can all mess with energy levels and cause issues if you have Gilbert’s Syndrome. Of course as noted below and elsewhere, caffeine can help some people. 

Exercise – Encouraging blood flow to your brain through exercise is an easy fix, short, long and medium term. It helps your brain stay healthy for longer. Just don’t embark on sudden vigorous exercise if you have Gilbert’s Syndrome – or your symptoms may be triggered. Even standing and moving about the room on a regular basis can help.

Sleep quality is really important. There are many reasons you could experience poor sleep and brain fog can result. Improving sleep quality may resolve the issue. Sometimes life gets in the way of sleep! In which case you could try other tactics such as stress reduction, pacing or supplements to help bolster your energy.

Stress reduction or managing response to stress eg meditation, hypnotherapy, counselling, cbt, can help you deal with stressful or anxious thinking that are preventing you from thinking clearly. 

These are all lifestyle interventions that can reduce your Gilbert’s Syndrome symptoms overall. Other posts talk about some of these in relation to managing Gilbert’s Syndrome symptoms. Here are links to some:

https://gilbertssyndrome.org.uk/how-to-stop-feeling-exhausted/

https://gilbertssyndrome.org.uk/gilberts-syndrome-and-caffeine/

https://gilbertssyndrome.org.uk/hack-your-liver-to-improve-your-mental-health/

https://gilbertssyndrome.org.uk/the-liver-diet/

I have produced a Gilbert’s Syndrome Essentials course that can help you with the main Gilbert’s Syndrome symptoms. The course has additional advice and resources to help you get started on your journey to a happier and healthier life with Gilbert’s Syndrome. Read more

To develop a personalised programme you might want to work with a health coach who can help you get a plan to improve your wellbeing based on your individual circumstances. They can help you track and manage symptoms together with you. https://wellandgoodlife.co.uk/plans-for-health-and-wellbeing/

Tracking and managing symptoms

If you’ve tried a few things and they haven’t worked, then maybe you need to take a more detailed look at what’s happening and when.

Can you pinpoint episodes? Is there something that happens beforehand. Try a symptom tracker. It may be something that happens the day before or a couple of days before that is the trigger. You might then be able to avoid the problem or adjust your lifestyle to reduce exposure or experience the symptoms when they’ll have less impact. 

For example, I had a once weekly commute to a distant city which was an eight hour round trip on top of a day of long meetings. The next day I would feel absolutely drained, and overwhelmed by brain fog. I made sure that was my final working day of the week or adjusted my hours to ensure a short working day afterwards with no complex tasks. 

Pacing

A similar kind of symptom management is ‘pacing’. If you find that after certain activities or an active period you experience brain fog or fatigue, then balancing your activities might mean you have fewer episodes. If you have a chronic health condition then pushing through is not usually the best method of living better with your condition. Pacing, a practice tested and developed with people who have chronic fatigue conditions, has been shown to work well in managing symptoms including brain fog.

The organisation for people with Ehlers Danlos and other hypermobility conditions has a guide that is useful: https://www.ehlers-danlos.org/information/managing-fatigue-sleeping-problems-and-brain-fog/

Action for ME have a useful booklet on pacing that sets it out in great detail if you want to have a go https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf

How pacing works: First you would analyse when your activities are triggering your brain fog. Then limit those activities by initially reducing considerably or down to within a minimum. Only increase activity if that doesn’t result in symptoms. It takes time and planning, but it can get you off a treadmill of repeated brain fog and fatigue episodes. Sometimes you may blow your activity budget for a special occasion. At least you know what to expect and can set time aside, or practice self care to recover more quickly.

If you have ensured you are deficiency free, don’t have other health issues that aren’t treated, are eating well, reducing your exposure to caffeine, sugar and alcohol, sleeping well and are managing stress, plus there are no specific triggers to avoid then you are likely to have fewer episodes. There are plenty of posts to help with some of those aspects of living better with Gilbert’s Syndrome. You can also take the Gilbert’s Syndrome Essentials course for a grounding in dealing with some of the key symptoms. 

Long term brain health

You can support your brain function for the long term too.

Adding berries into  your breakfast could increase concentration and focus. This may be because the antioxidants reduce inflammation and support blood flow. They also support brain plasticity, enabling it to organise itself better See this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4192974/

And in this study, blueberry juice was found to help brain function https://www.labnews.co.uk/article/2025588/berry_aids_brain_function_improvement

Nut intake has also been linked to better capability to pass cognitive tests in later life for women in this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4105147/

Caffeine can have short and long term benefits if you can tolerate it. It may protect against Alzheimer’s but this is thought to be because of the antioxidants. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7554764/ https://pubmed.ncbi.nlm.nih.gov/26677204/ Although caffeine has its benefits, it can potentially work against you if you are trying to balance your energy levels and issues such as brain fog. Becoming reliant on a psychoactive stimulant can make it harder to manage your fluctuating fuzzy head symptoms. Here’s my post on Gilbert’s Syndrome and caffeine

Supplements

You can add supplements into your healthy living plan or toolkit. Or, you may just need an extra boost during an episode. Here are some you might try. 

Ashwagandha https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573577/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3252722/ and

Rhodiola https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9228580/ are adaptogens that help balance stress and energy levels, enabling great energy stability. They don’t work overnight, but can provide a general foundation for balancing energy and improving sleep.

Add in Gotu Kola if you need a gentle lift more immediately. I find it acts like caffeine, but without the agitation, rapid heart beat and discomfort that I experience with coffee due to my sensitivity. I use it if I have a demanding task and I’ve perhaps had a poor night’s sleep or have a flare up of fatigue for another reason. Studies show its use in a wide range of conditions. It is thought to protect the brain, support brain health, help mood and even work as a painkiller https://examine.com/supplements/gotu-kola/research/#ref-71 

If you are experiencing an overall increase in your Gilbert’s Syndrome symptoms and feeling hungover, perhaps jaundiced, nauseous etc, you might want to add in supplements such as zinc sulphate to reduce bilirubin levels. Some people also take NAC. Read more about how they impact bilirubin here: https://gilbertssyndrome.org.uk/what-is-gilberts-syndrome/bilirubin/

Some people take calcium d glucarate to help with the glucuronidation (detox pathways in the liver), and dandelion root is also thought to help https://mastcell360.com/wp-content/uploads/2019/11/Glucuronidation-Assist.pdf 

More help and info

I hope I’ve given you lots of ideas to try to help banish brain fog. If you would like more support to develop a lifestyle that supports a healthier and happier life with Gilbert’s Syndrome, you can find the Gilbert’s Syndrome Essentials Course and plans for personal support and coaching to help you here. https://wellandgoodlife.co.uk/plans-for-health-and-wellbeing/

Get regular updates on the latest help for Gilbert’s Syndrome on twitter https://twitter.com/GilbertsSyndrom and instagram https://www.instagram.com/gilbertssyndrome.org.uk/

Do let me know if you experience brain fog and if anything has helped you by sharing your comments below.

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Beware B12 vitamin deficiency when you have Gilbert’s Syndrome

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Tell me more about B12…

B vitamins are vital for energy and to manage stress. Vitamin B12 is a superhero that helps support your red blood cells, nerves and is essential to your DNA, as well as many other processes in your body.

Why is understanding B12 vitamin deficiency even more important when I have Gilbert’s Syndrome?

For people with Gilbert’s Syndrome it’s particularly important to get enough of this vitamin because B12 deficiency can result in hyperbilirubinemia (the buildup of bilirubin in your body). Combined with Gilbert’s Syndrome this can be acute. But this symptom could also be dismissed because you have Gilbert’s Syndrome.  It’s vital to know you have Gilbert’s Syndrome, and its symptoms, so you can include that knowledge when in a medical situation. But it’s also important not to dismiss symptoms as JUST Gilbert’s Syndrome, when they could be something else. 

Having a B12 deficiency could give you similar symptoms to a Gilbert’s Syndrome flare up – so do not dismiss it when you feel unwell for longer than usual. 

If you don’t have enough B12 your ability to produce S-adenosyl-L-methionine (SAMe) is affected, which has been shown to help process bilirubin in people with Gilbert’s Syndrome.

Low on energy? Known as “The Energy Vitamin”, Vitamin B12 is essential for the production of red blood cells and also helps maintain a healthy heart. A deficiency in B12 can cause you to feel tired and fatigued, affect your nervous system and can also cause anaemia. Click to learn more and for your discount!

From Dr Vegan

Cases and research showing impact of B12 deficiency on Gilbert’s Syndrome.

Case reports and research: 

You might be interested to read about this case, where a woman with vitamin B12 deficiency also had Gilbert’s Syndrome. Treatment with vitamin B12 led to much improved symptoms.

This article on ‘food fadism’ and GS increasing jaundice is also interesting.

(In my opinion, the headline is misleading. Many people will be eating a predominantly plant diet for a variety of reasons which may be economic, cultural or religious – not just a ‘fad’). It may be worth noting that in this study all but one of the patients are male, and this is in an Indian cohort – which has a different UGT1a1 string (the Gilbert’s Syndrome gene) to other populations. However the case report I also link to above is for a caucasian woman, and it does corroborate the findings. This means these findings are relevant across different biological variations of Gilbert’s Syndrome. 

The research illustrates the need to ensure your diet has the right nutrition, whatever foods you eat.

Many people may be below optimum ranges for B12. This study : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6540890/ shows that in India 47% of people may be deficient in B12 . Studies indicate that B12 deficiency may be at rates between 6% and 20% in the UK and US, 40% in South American countries, and up to 70% in countries on the continent of Africa. http://frankhollis.com/temp/BMJ%20B12%20deficiency%20review.pdf This is from a 2014 paper, and more recent studies 

Important things to take away from the research about B12 vitamin deficiency and Gilbert’s Syndrome. 

What’s important to note is that there are two main implications 

  1. You may have jaundice for a reason that is not directly due to Gilbert’s Syndrome, even if you have Gilbert’s Syndrome
  2. B12 deficiency will likely make your jaundice and other symptoms WORSE:

‘aggravating pre-existing indirect hyperbilirubinemia in Gilbert’s syndrome patients’

If you have jaundice that is not clearing up, or prolonged fatigue, brain fog etc – then it is always worth checking if there are other causes. If B12 deficiency is the cause then simple supplementation will have a considerable positive effect. Which is worth knowing!

What could cause B12 deficiency?

Causes of B12 deficiency are usually one of the following:

  • Age:  As we get older our stomach acid reduces which means we don’t break down the B12 into forms that can be absorbed easily by our body.  
  • Medical conditions: such as Celiac or Crohn’s disease will prevent the stomach from absorbing B12 properly, as will gastric bypasses or stomach parasites. You may also have a condition called pernicious anaemia, which results in B12 deficiency.
  • Some medications: such as metformin (used to support people with diabetes) and proton pump inhibitors (stomach acid suppressants) will interfere with how B12 is broken down and absorbed. 
  • Diet: if you aren’t careful to ensure that you are regularly eating food that contains B12, then you may become deficient over time. Modern industrial farming methods have depleted natural sources of B12 in our food.
  • https://www.nutranews.org/en–vitamins–is-everyone-lacking-in-vitamin-b12-why-is-there-such-widespread-deficiency-what-are-the-consequences–1481

What are the symptoms of B12 deficiency – and why you should know about them if you have Gilbert’s Syndrome symptoms. 

For milder deficiency you may feel tired, be pale or jaundiced if you have Gilbert’s Syndrome. You may get dizzy and feel weak, your heart may beat too quickly. A sore tongue and loss of appetite, plus other digestive disturbances might occur.

Longer term, more serious deficiencies can have very serious impacts. You may become clumsy as you lose nerve control and there is neurological damage. It may feel like you have dementia as your memory is impaired. You may even experience hallucinations and psychosis. Heart conditions and infertility can also result. 

What range is normal for B12?

The normal range for vitamin B12 can vary slightly depending on the lab. But a normal level of vitamin B12 in your bloodstream is generally between 190 and 950 picograms per milliliter (pg/mL). Between 200 to 300 pg/mL is considered borderline and your doctor may do more testing. Below 200 pg/mL is low and more testing is needed.

More on deficiency

It can take a long time for deficiency to occur as the body stores last for a long time. 

How should I make sure I am not B12 vitamin deficient?

In the past we absorbed it from the soil that produced our food. Modern farming and intensive production have exhausted our soil and sanitised our food. Now, sources of food that have B12 have to be fortified. You can get B12 from eating animals, but that’s because they’ve been given supplements themselves. You can cut out the middle by going straight to the supplement. https://www.veganfoodandliving.com/vegan-diet/the-truth-about-b12-and-where-to-get-it-on-a-vegan-diet/

Taking a supplement is an easy way to get around a deficiency. It’s thought to be safe to take in any volume, as it is water soluble and so too much will be passed out of the body. Only a small amount of the supplement version is absorbed. This fact sheet gives different B12 amounts based on source, and the percentage absorption of separate supplements.

You may need more if you are older or breastfeeding, for example. If you are already deficient then extra may be taken for a while ahead of reducing to a maintenance supplement. 

If you have a condition that affects the stomach or bowel, such as Crohn’s, you may need injections rather than an oral supplement. 

How much B12 should I take?

In the US the National Institute of Health recommends 2.4mcg for an adult, more for a pregnant person. In the UK the  NHS recommends 1.5mcg.

Dietary supplements

Vitamin B12 is available in multivitamin/mineral supplements, in supplements containing other B-complex vitamins, and in supplements containing only vitamin B12. 

Multivitamin/mineral supplements typically contain vitamin B12 at doses ranging from 5 to 25 mcg (https://ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional). Vitamin B12 levels are higher, generally 50–500 mcg, in supplements containing vitamin B12 with other B-complex vitamins and even higher, typically 500–1,000 mcg, in supplements containing only vitamin B12.

The most common form of vitamin B12 in dietary supplements is cyanocobalamin. Other forms of vitamin B12 in supplements are adenosylcobalamin, methylcobalamin, and hydroxycobalamin .

No evidence indicates that absorption rates of vitamin B12 in supplements vary by form of the vitamin. 

Basically – you can take a little extra in the form of a multivitamin, or you can focus on your B vitamins or B12 in particular, in which case you’ll get a larger dose. However, the type of B12 and massively increasing the dose to above 1,000mcg isn’t going to substantially increase your level of B12 absorbed. 

This supplement from Drvegan is high quality and dedicated to keeping your B12 topped up!

Final thoughts on staying well

The great news is that it’s easy to treat deficiency with supplementation and mild symptoms will quickly improve. More importantly, many people could have less than optimal B12 levels, which shows how important balanced nutrition is. 

A plant based diet is great for health and yeast extract and yeast flakes can be an important addition. Or – cereal, bread, multivitamins may all include your essential B12. 

Not everyone has the resources to afford food that has the best nutrition, or age, illness or other factors may mean that their food isn’t providing what is needed for good health. 

In the UK we are fortunate that our NHS Doctors will usually seek a blood test when symptoms mentioned present themselves. This would quickly highlight any concerns. The solution is then simple and cost effective. 

With increasingly poor diet quality and depletion of soil quality, it is important to be aware that your food intake may need to be addressed to ensure you get the best from it. Simple adjustments can balance out any gaps. You could address issues that are making you feel much worse than you need to, and are exacerbating your Gilbert’s Syndrome! 

More background reading sources on B12:

By staying informed you are taking a step towards protecting your good health and wellbeing. Try out the health and nutrition tips on the website.

Stay up to date with the research through these posts by subscribing. 

Follow @GilbertsSyndrom on twitter for regular tips and support. 

Get health coach support to ensure you are looking after your wellbeing with someone trained to help.

Wishing you good health and wellbeing!

image Michelle Blackwell Unsplash https://unsplash.com/photos/przZDqzZKpk

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Your genes and why you have Gilbert’s Syndrome

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Photo by julien Tromeur on Unsplash

Discovery and new science

Gilbert’s Syndrome was first identified in 1901 by Dr Gilbert, as a benign condition causing jaundice. Since then, scientists have mapped our genome and discovered why we have Gilbert’s Syndrome. More has been explained about how the mutated gene impacts our bodies in different ways. Each year we discover new information.

As we have improved our understanding of our genes, we have also discovered that there are different types of Gilbert’s Syndrome. People from different populations have variations of Gilbert’s Syndrome.

The important gene and its different types

The important gene is UGT1A1 . https://medlineplus.gov/genetics/gene/ugt1a1/

Mutations in this gene happen in people all over the world, but to different levels depending on your background. The main impact is that people with this gene difference produce less of an enzyme – a chemical that helps process things in the body. Bilirubin is one of the substances that this enzyme processes. See more about bilirubin here.

One of the great things about having more bilirubin in the bloodstream is that it appears to help protect people from some diseases such as cardiovascular diseases and diabetes type II. Some scientists have suggested it could be a positive evolution.

Research shows that the effect is different depending on your heritage:

For example, individuals with Eastern Asian ancestry (i.e. Chinese and Japanese) appear to have the lowest circulating bilirubin concentrations (prevalence of GS ∼2%), whereas individuals originating from India, Southern Asia and the Middle East demonstrate significantly increased rates of GS, approximating ∼20% (Figure 2). Caucasian ethnicity is associated with a 2–10% prevalence of GS .

 https://www.tandfonline.com/doi/full/10.1080/10408363.2018.1428526

Figure 2. Geographical prevalence of benign hyperbilirubinemia (GS) in articles reporting TB concentrations (i.e. data are not derived from genetic analysis) in the general population

Inheritance

You can inherit Gilbert’s Syndrome from one or both of your parents. But, these are different types:

Gilbert syndrome can have different inheritance patterns. When the condition is caused by the UGT1A1*28 change in the promoter region of the UGT1A1 gene, it is inherited in an autosomal recessive pattern, which means both copies of the gene in each cell have the mutation. The parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition.

When the condition is caused by a missense mutation in the UGT1A1 gene, it is inherited in an autosomal dominant pattern, which means one copy of the altered gene in each cell is sufficient to cause the disorder. A more severe condition known as Crigler-Najjar syndrome occurs when both copies of the UGT1A1 gene have mutations.

https://medlineplus.gov/genetics/condition/gilbert-syndrome/#inheritance

Other things that impact your Gilbert’s Syndrome symptoms

The current thinking is that there are different versions of mutation of the UGT1A1 gene. Because of this and a range of other factors you might experience symptoms. This is where the importance of understanding that your genes are only ONE piece of the jigsaw comes in. The key to managing any genetic condition or trait is to understand that there are many other things that impact how it works in you.

In Gilbert’s Syndrome, of whatever type, other things will impact your symptoms. One reason few people experience symptoms before puberty is because the hormonal changes that occur at that time trigger symptoms. Hormones are one factor – from life changes to menstruation, this will impact your symptoms.

Other factors which affect your Gilbert’s Syndrome symptoms include – vigorous exercise, fasting, dehydration, a virus, external toxins, stress, sleep deprivation and many more. The pathways of the liver which use the enzyme we are deficient in as a result of this gene mutation are affected by all of these internal and external factors.

It’s worth understanding that genes are only one component of how you live your life. AND you can control many of the other components to enhance your wellbeing. But don’t forget you also benefit from the protective effects that your Gilbert’s Syndrome offers.

Find out more and stay up to date

As a member of the Genetic Alliance, a charity with a membership of over 200 patient organisations in the UK that supports people with genetic conditions, I stay in touch with the latest on support for people with genetic conditions. If you want to find out more about genetic conditions check out their website https://geneticalliance.org.uk/ You can also find out more about genetic testing in the UK.

With continued discoveries about how a gene difference can influence us, and the adaptation of science to support our health, as well as how lifestyle and lifestage are key, it’s important to stay up to date with understanding Gilbert’s Syndrome. This way you can take control of your health and happiness.

Sign up / donate to help keep this information coming!

Wishing you well

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Guide to Gilbert’s Syndrome and itching

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Itching is a topic that really gets under the skin of people with Gilbert’s Syndrome.

bear scratching an itch

One of the most common questions I hear, from people with Gilbert’s Syndrome,  is ‘does anyone else get really itchy???!’  The answer is ‘absolutely’! Many people with Gilbert’s Syndrome get itchy skin.

But WHY and WHAT can you do about it?

Why?

The reason it happens is up for speculation. It has been recognised, for over 2,000 years, that jaundice (which many people with Gilbert’s Syndrome will have at some point) is linked to itching (technically known as ‘pruritis’). 

Is it the prickly nature of bile salts? Is it toxins building up in your body as your liver isn’t dealing with them properly? Your skin is your second largest de-tox organ, and if your liver isn’t doing its best, then your skin may be acting as back up. Are there histamines, serotonin or other chemicals produced by the body involved? 

There’s no doubt that bilirubin build up (one of the main Gilbert’s Syndrome symptoms) above a certain level does cause intense itching, usually at the point when you can see jaundice in your skin or eyes. 

‘Itch is present in 80%-100% of patients presenting with cholestasis and jaundice’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4316083/  You can find out more about the way your body may be generating the itch sensation in this article.

Not Gilbert’s Syndrome?

Of course – it may not be your Gilbert’s Syndrome at all. Lots of things can cause the sensation of itching:

Sometimes it’s an allergic reaction, or eczema, or even a pinched nerve. Pregnancy and some medications can also cause itching. Itching can be a side effect of medication that’s not being effectively processed in your liver, as a result of your Gilbert’s Syndrome. Do keep an eye on symptoms when taking any new prescription drug and speak with your doctor if you have any unusual or unpleasant sensations. Air conditioning or your age can affect your skin’s dryness and sensitivity. You can also develop a response to a detergent, wash or perfume even if you’ve used it for years. Don’t assume it’s always Gilbert’s Syndrome. 

This article provides some hints and tips to try – it is not medical advice and I am not medically qualified. Always speak to your medical professional before changing a health or medication routine, or if you are getting unpleasant side effects or symptoms.

What can I do?

Most importantly – how do you stop it when it’s driving you crazy! 

Once you’ve read this article you should be better equipped to:

  1. Deal with the liver function if that’s the root cause
  2. Soothe and comfort the skin to reduce the itch
  3. Give your skin the best chance to be irritant free

Look after your liver function: 

If this is a Gilbert’s Syndrome related symptom, then Step One in managing a flare up of GIlbert’s Syndrome remains the same. In headlines : sleep, drink water, eat nutritious low fat, low sugar whole foods and relax. If you are being triggered by something in your environment (medication, chemical fumes etc), then remove or reduce it if you can.

Usually symptoms will last just hours or a couple of days if you can take time to manage your lifestyle. This isn’t always possible of course – you may have caring responsibilities, a shift pattern, other chronic illnesses, be travelling or under a great deal of stress. Whatever your situation, be kind to yourself and do what you can to make the most of your situation to try to include some of those elements of good self care. 

You can read more about dealing with symptoms and lifestyle across this website and take the Essentials of Gilbert’s Syndrome course (find out more here) to get foundational tips to manage your life better with Gilbert’s Syndrome. 

Meanwhile – let’s deal with the itch! 

This is really important, before we go any further,  DO NOT SCRATCH! All this does is irritate the skin and you’ll end up with a longer term problem whilst the skin heals. If you DON’T scratch then the itch will stop as your Gilbert’s Syndrome symptoms settle down (or when you remove the irritant).

If you DO scratch, then you’ll be dealing with skin that is irritated, sore and healing and will itch even MORE!

You may find, like me, that you scratch at night or without even thinking about it. Try to train yourself to notice before you damage your skin. At night, you could cover the itchy skin with clothing or wrap some fabric around it so you don’t scratch whilst asleep. Some people even wear a light pair of gloves to prevent their nails from scratching their skin whilst asleep.

You might be in tears trying not to scratch – I’ve been there.  Here are some things that can help:

Nati Melnychuck unsplash

PS I have sourced examples of products for you so that you can easily find them – there’s no obligation to buy these, and you might find them cheaper elsewhere. These links may provide a small affiliate fee, at no extra cost to you, but which will help keep this website running.

Creams and ointments –

There are a number of things I have found which help my skin feel less itchy. I have other conditions which result in me having soft and sensitive skin and these help me. Creams with colloidal oatmeal, such as Aveeno, are really soothing. The oatmeal helps inflammation and provides a barrier that protects irritated skin. You can buy colloidal oatmeal as a separate powder and add it to a bath or your own cream. 

Aveeno is a product works well for deep moisturisation, and has a ‘triple oat complex’ plus shea butter, which you can buy here https://amzn.to/3S4QJWj I recently bought some and it’s working really well for me.

For a lighter version, I use this https://amzn.to/3DMkR4r

Sudocrem is also soothing to skin. It’s really a universal antibacterial cream that is even suitable for babies, and so very kind to your body. The lavender in it is both soothing and has a nice odour. A little goes a long way. It tends to sit on the skin and has a white residue, so may be better for smaller areas, or under clothing for larger areas. It’s also really affordable! You can buy it in supermarkets, chemists or here https://amzn.to/3DLfHFL 

E45 have an itchy skin cream which has a topical anaesthetic that reduces itch. https://amzn.to/3xJ4fH8  

Some antiseptic creams also have topical anaesthetics, such as Savlon https://amzn.to/3SjWq2z . I would suggest caution again, as there are many chemicals and other ingredients which your body might not process well and which could just add to the problem. Perhaps try other creams and gels first, such as colloidal oatmeal. If you have broken skin, perhaps from scratching, then this would help with both relieving the sensation and helping to protect the skin from infection.

Gels and creams with aloe vera can also be soothing. Aloe vera has anti inflammatory and healing properties. Watch out for the added ingredient of menthol though. Many aloe vera preparations are sold with menthol to help cool sunburnt skin, but menthol is poorly processed by people with Gilbert’s Syndrome and it can make you feel unwell. Other preservatives and chemicals can also detract from the benefit of using a natural plant such as aloe. A preparation such as this gel may be a good option to avoid too many added ingredients https://amzn.to/3qWdkZ8

Do test new products on a small amount of skin first though. A small percentage of users of the many aloe products on Amazon experienced red and sore skin after trying a new aloe brand. Do read reviews and decide for yourself. If you’ve already got an after sun cream with aloe vera that you’ve used before with no problems, then perhaps give it a try 

Some people use hydrocortisone creams, which you can get from pharmacies /chemists /drug stores. I would suggest caution here as they can only be used for a short period.  It is a steroid and works on the chemicals that cause itching and redness in the skin. Creams are designed for conditions such as eczema and rashes and can also cause thinning of the skin. (Preparations with antifungals are sold for athletes foot). There’s useful information about hydrocortisone here https://www.nhs.uk/medicines/hydrocortisone-skin-cream/ I would be interested to hear if you have used a hydrocortisone cream for an itch that is definitely just your Gilbert’s Syndrome, and whether it has worked. 

Drugs – 

Steroids  (such as hydrocortisone and applied directly to skin), antihistamines and antidepressants. These can be prescribed or over the counter. I would suggest that they don’t tackle your Gilbert’s Syndrome and may not deal with the itch that relates to your liver function. They may be helpful by acting in another way, perhaps if you have an allergy, or another skin condition such as psoriasis or eczema for example. Your itching may not be down to your Gilbert’s Syndrome don’t forget. If they do help you, it would be great to hear about it.

Some other natural remedies  –

Toa Heftiba unsplash

https://www.stylecraze.com/articles/effective-home-remedies-for-skin-itching/

Bathing with a cup of baking soda may help reduce skin acidity and prove soothing. Both available in most grocery stores. 

Coconut oil in a bath, or massaged onto the skin may help. It has antiinflammatory and antimicrobial properties and is well absorbed. https://nationaleczema.org/blog/get-the-facts-coconut-oil/

For a solid (at room temperature) and unprocessed version with a mild coconut aroma, try this https://amzn.to/3S4hkTf

For a processed version which has no odour or taste you would need a refined version https://amzn.to/3dDGvxe . For one that stays a liquid, then a fractionated option would be your choice eg https://amzn.to/3UoFklE 

Neem is a leaf widely available across India, Pakistan, Bangladesh and Nepal. It is also found in Africa and South America. This plant has been used in medicine for thousands of years.  Neem has many properties, including antimicrobial, antifungal and anti-radical. It may even be analgesic (provide pain relief) and protect the liver (but these studies are in rats not people with Gilbert’s Syndrome).  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4791507/

There are many claims for neem as a detox tool. It can be taken as powder, in capsules, in ointments or tinctures or teas. Like many herbal preparations there are few clinical studies of the effect in people, given drug companies aren’t going to make any money from it. Please do read any claims with caution. If you have tried neem, then do share your experience. 

Here’s the oil – and if it doesn’t work for your itch, you can use it on your garden as an insect repellent! https://amzn.to/3xJCgH8

You can use this powder https://amzn.to/3fbKotE in a paste with some water on skin or hair, pop it in a tea or drink, or even brush your teeth with it. 

Mint – some remedies include mint, but the principal cooling effect in mint is menthol, which is not processed well by people with Gilbert’s Syndrome. I am afraid I’ve only had negative effects from mint, peppermint and menthol myself. However, I’ve not tried mint as a herb on skin, plus I don’t seem to have problems with mint in toothpaste (probably as I try not to swallow it!), but mint tea or any food with mint gives me indigestion or makes me feel sick.

Do you have an experience with mint that you can share? 

Other simple solutions that will help with itching and you to stay irritant free

  • Wear soft comfortable clothes washed in an environmentally friendly sensitive skin detergent. The chemicals in your detergent could be adding to your itching issues.  You can find lots of chemical free products over at The Vegan Kind supermarket.
  • Clothes that are 100% organic cotton or bamboo, or tencel (made from renewable birch pulp) can be really good against the skin. 
  • Try not to overheat (not that easy if you are menopausal or there’s a heat wave!), use cooling pads or gentle cloths dampened with cool water and gently pat the skin (don’t rub), for a cooling and soothing sensation. 
  • An ice cube against the skin will cool and numb the skin, if you can tolerate it. 
  • Do not over wash or bathe as this will damage the skin barrier and make the problem worse.
  • Avoid perfumes and moisturisers with chemicals that might irritate your skin. Try detergents, cosmetics and washes that are for sensitive skin. They will be less likely to trigger an itch. 

I hope that you find the tips give you some relief if you experience itching. You might have tried solutions that work for you and which are not mentioned here. Please share your experiences as it’s often the only way that other people with Gilbert’s Syndrome will find help. Please share them in the comments, @GilbertsSyndrom , or email help@gilbertssyndrome.org.uk . I’ll share them out and we can all live better with Gilbert’s Syndrome

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