Beware B12 vitamin deficiency when you have Gilbert’s Syndrome

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

Your genes and why you have Gilbert’s Syndrome

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

Helping your liver deal better with toxins

Good news! The detox process of the liver which won’t work as well for people with Gilbert’s Syndrome is called Glucuronidation and this process can be helped with Calcium D-Glucarate, glycine, magnesium, and b vitamins.

  • Calcium D Glucarate can be taken as tablets or capsules, but is also available in apples, brussels sprouts, broccoli, cabbage and bean sprouts.
  • Glycine is an amino acid and in high-protein foods, such as fish, meat, beans, milk, and cheese. Glycine is also available in capsule and powder forms, and as part of many combination amino acid supplements.
  • Spices, nuts, cereals, coffee, cocoa, tea, and vegetables are rich sources of magnesium. Green leafy vegetables such as spinach are also rich in magnesium as they contain chlorophyll. Magnesium supplements are widely available and often with calcium and vitamin c which help its absorption. The best absorbed types of magnesium are citrate and malate, rather than the cheaper form of oxide.
  • B vitamins are available in many different foods (see the NHS website), but the easiest ways of accessing them are through yeast extracts such as Marmite, and fortified cereals.

So why not help yourself and make sure your diet contains a good balance of foods that may help your liver to work better.