We know that it’s vital for our kids to get plenty of nutrients, so they can be happy and healthy. But what if their bodies are causing them to excrete vital nutrients needed for growth and wellbeing? One condition that can cause this issue is pyrrole disorder.
Pyrrole disorder is not well understood. Many doctors either don’t know much about it, or aren’t convinced that it exists. But research is starting to show it can contribute to many different health concerns, including those that kids tend to develop. If your child is demonstrating the symptoms of pyrrole disorder, testing and treatment can make a massive difference to their wellbeing.
Watch the video below or keep reading to learn more about pyrrole disorder.
What is pyrrole disorder?
Pyrrole disorder is a type of imbalance in the body that affects the synthesis of haemoglobin. But although it is to do with haemoglobin, it doesn’t tend to affect the blood much. Instead, there is an over-production of a substance known as HPL (I’ll save you from trying to pronounce the full name!)
HPL depletes the body of crucial nutrients before we can absorb them into the body. The two main nutrients that are depleted are zinc and vitamin B6. Magnesium, essential fatty acids and biotin can also be affected.
It is known by a number of different names, including pyroluria, kryptopyrroles and Mauve factor. But to keep it simple, we’ll call it pyrrole disorder.
Symptoms of pyrrole disorder
Many of the symptoms revolve around the disorder’s impact on production of brain chemicals, or neurotransmitters. Low zinc and B6 can deplete our calming neurotransmitters such as serotonin and GABA. It can cause imbalances in stimulating brain chemicals such as dopamine, and also affect melatonin levels. These changes can lead to all sorts of mood and nervous system symptoms.
However, excess pyrroles can cause all sorts of problems throughout the body. Any process that depends on zinc and/or B6 can be affected by the condition.
Some of the more common symptoms of pyrrole disorder include:
- Inability to deal with stress
- Anger and explosive tantrums
- Sudden mood swings
- Impulsive behaviour
- Brain fog
- Headaches and migraines
- Poor appetite in the morning
- Multiple white spots of the fingernails
- Digestive symptoms such as IBS, irregular bowels, tummy pain and bloating
- Immune symptoms such as lowered immunity, slow recovery time, food allergies and intolerances
- Sleep issues
- Symptoms that become worse during a period of high stress
- Symptoms that become worse during a growth spurt
Pyrrole disorder is also linked to other conditions. It’s not known whether excess pyrroles leads to these conditions, or if the conditions make someone more vulnerable to high pyrroles. But managing pyrrole disorder could help improve many of the associated symptoms. Some of the linked conditions include:
- Downs syndrome
- Alcohol and/or drug dependence
- Bipolar disorder
- Sensory issues such as sensory processing disorder
Pyrrole disorder in kids
The presentation of high pyrroles in kids can vary. Some will show many of the symptoms mentioned above, but others may not.
This is what other experts have had to say about kids with pyrrole disorder:
‘Children in a pyroluric state are volatile, angry, and tend to cry easily. They are often calm one moment and angry the next for no apparent reason. They have a great deal of inner tension, and often manifest their symptoms with impulsive unfiltered behaviours. If you are working with a child who goes into frequent rages and is inconsolable and continually acting out, this can be a sign of pyrrole disorder.
Children with pyroluria may have sensory issues. They are often sensitive to tags on clothes and certain fabrics against their skin. These children need down time to calm down after an up-cycle of bad behaviour. They may prefer to be alone or find themselves isolated and alone because others prefer not to be with them. These children often experience a worsening of symptoms during growth spurts. One possible but not definitive sign of pyroluria in children is multiple white spots on the fingernails.’
What causes pyrrole disorder?
There is a strong genetic link with pyrrole disorder. If you have it, your kids are more likely to develop it. If your kids have it, there’s a chance that you have it as well. It’s not guaranteed, but it is something to be aware of once one member of the family is diagnosed.
In clinic, I often see mums who don’t have much external stress, but still feel overwhelmed. With kids, it’s common that small changes to their routine can be difficult for them to deal with.
A major cause of high pyrroles is stress. High pyrroles also makes it harder for your body to cope with stress, making it a vicious cycle.
Stress can be either emotional or physical stress, but it’s often a combination. One common physical stressor that affects pyrrole levels is leaky gut. In the clinic, I’ve seen kids with a history of high antibiotic use who have gone on to develop pyrrole disorder. This is one reason why it’s essential to correct leaky gut early on.
Other gut concerns such as dysbiosis and poor dietary choices can also contribute to pyrrole disorder.
Testing for pyrrole disorder
The good news is that testing pyrrole levels is relatively easy. It’s non-invasive, as it’s a urine test. But you do want to go through a reputable practitioner to ensure testing is done correctly. HPL is vulnerable to damage from heat and light, so the test needs to be done in the right environment and transported to the lab.
The higher the level of HPL, the more severe the case. Higher levels often equate to the severity of symptoms the person is experiencing. The levels can also predict how long recovery can take. When someone has very high levels, it can take many months to replenish the nutrients and bring them back into balance.
The range can depend on the lab and the age of the client. As far as I’m concerned, above 10 in kids indicates pyrrole disorder. Adults will generally show a result above 40 for pyrrole disorder, although some may be on the higher end of the ‘normal range’ and still experience symptoms.
If the test comes back positive, further testing is often needed to determine how it’s affecting other nutrients and processes. I will often send clients to get a blood test called the Pfeiffer profile. This tests things like copper, zinc, histamine, vitamin D, homocysteine and the protein that transports copper.
It’s also common to see clients with pyrrole disorder that also have a mutation of the MTHFR gene. MTHFR affects the metabolism of folic acid, as well as methylation. This can affect the symptoms experienced, and the protocol followed to correct the imbalances.
How is pyrrole disorder treated?
Pyrrole disorder is not something you can simply research and treat yourself. For many, symptoms will get worse before they get better, so it’s important to have a practitioner to support you through the difficult times.
Supplementation is needed to correct the zinc and vitamin B6 levels. However, the dosage needs to be personalised to the case. Different forms of vitamin B6 and other nutrients may need to be used, depending on how it’s affecting the client, and if there are other implications such as MTHFR.
Addressing other contributing factors is also important. Finding ways to manage stress, healing any leaky gut issues and improving the nutrient status through diet are a few other areas we tend to work on.
Someone with pyrrole disorder may not need to take supplements forever. But many will need to use them on and off, particularly during stressful times.
Think that pyrroles might be a problem for your family? I can organise pyrrole testing and treatment for your child (or for you!) To book an appointment in person or via Skype, click here.
Have more questions about pyrrole disorder? You can contact me directly here.