Dear Readers,
As this week was suicide prevention week we’re going to discuss a question from a client whose daughter attempted suicide. We’ll call this woman Marla. Marla’s daughter was only 14 when she tried to take her own life and after a stressful year getting bounced around in the psychiatric system with no improvement Marla reached out to me. The advent of high school had only increased her daughter’s stress and she was worried for her safety if she couldn’t find answers.
Marla’s daughter also suffered from disordered eating and she intuitively felt the two might be connected. We were both very glad she made that connection because three months after the simple changes I suggested her daughter became much more relaxed and calm. She had previously been very anxious, especially in social situations and would isolate herself to the point of not going to school for months. Pressure to attend had preceded the suicide attempt so the family was afraid to push her past her comfort zone again. This poor teen would walk around the home hitting herself in the head, telling herself how stupid and messed up she was, binging (then purging) junk food to soothe herself. She was full of angst and self loathing.
It turned out Marla’s daughter had all the symptoms of Pyrrole disorder so we treated her for that using nutritional interventions. The treatment had an incredible impact and turned everything around for this young lady who quickly overcame her social anxiety, returned to school, and became involved in suicide prevention at school. Previously she had been diagnosed with social anxiety and bipolar disorder. The symptoms of both disorders dropped away with nutritional treatment. The turnaround started in as little as six weeks and she continued to improve over the course of a year. So today we’re going to unpack this little known disorder and how to treat it if you think it could apply to you or someone in your circle.
Pyrrole Disorder
It’s likely you’ve never heard of Pyrrole disorder, even if you suffer from it. Why is that? Well, the symptoms can look a lot like some very common psychiatric disorders, including schizophrenia, anxiety and bipolar disorder. These conditions are diagnosed with checklists, and despite the similarities in symptomatology, Pyrroluria is not ruled out. Many doctors don’t recognize it or have not been taught to screen for it.
Pyroluria is caused by an abnormal hemoglobin synthesis that results in a biochemical imbalance. The body produces too much hydroxyhempyrolin (HPL), which then binds to zinc and vitamin B6. These are then excreted in the urine (and hair), so the body becomes deficient. HPL is elevated when we experience excessive stress, both external and internal oxidative stress, so the problem can be triggered by stress, trauma, or bad dietary habits or any combination of these. Additionally, it can be genetic or acquired through prolonged antibiotic use, causing damage to the microbiome and intestinal mucosa. I also believe it may be related to undiagnosed/ untreated Celiac disease causing similar intestinal damage.
I have seen a lot of clients with schizophrenia that also have Pyroluria, my son included, but that is not shocking since schizophrenics often have a gluten intolerance, a disordered gut biome, and very poor dietary habits. It’s most common in youth.
Pyrrole disorder is also frequently seen in those with ADHD, Autism Spectrum Disorders, Down Syndrome, depression, obsessive compulsive disorder, epilepsy, Tourette syndrome, bipolar and anxiety disorders. I also see it in children with learning disabilities. It’s thought that 10% of the population suffer from it, but it’s difficult to know when it’s not being recognized or tested. I believe the incidence is higher and that it may actually be causative in some of these disorders.
What are the symptoms?
Some of the hallmark symptoms of Pyrrole disorder are:
- mood swings
- anxiety
- social anxiety or social withdrawal
- difficulty handling stress
- no dream recall (will say “I don’t dream”) OR excessively vivid dream recall, recounting very detailed and often morbid or horrifying dreams with regularity
- irritability
- severe depression
- severe food cravings (for junk, especially chocolate)
- temper tantrums or meltdowns
- inner angst or tension
- cold sores or other skin conditions that don’t fully heal or go away
- acne
- unexplained rashes on the body
- sensitivity to noises and light (startle easily, upset by loud events or stimulation)
- unusual stretch marks (acquired easily)
- burns easily in the sun or doesn’t tan (pale)
- allergies and/or food allergies/ sensitivities
- joint pain
- premature graying
- weak immune system - frequent infections
- bowel troubles (both extremes and IBS)
- bloating or pot belly
- sleep problems
- low appetite
- disordered sense of smell
- white spots on the nails
- difficulty learning and concentrating
- poor memory
- repeated colds or inability to recover when sick
- easy bruising
One other really interesting symptom is a sweet, fruity smell on the breath. It’s very distinct and unusual.
How is it diagnosed?
To be honest, it usually isn’t. It can be diagnosed with a urine test called a kryptopyrrole test to see how many HPL molecules you have. If the pyrrole count is 20 mg/dL or above it’s considered positive for the disorder. Some people’s numbers are in the hundreds! If the count is 10-20 a person may still be symptomatic and they are considered borderline for the disorder. Below 10 is considered normal.
A hair mineral analysis also tells us if there is low zinc or an excess of zinc excretion, and what the copper level is. Copper and zinc need to be in a very specific range to be in balance, so avoiding a multivitamin with copper is essential for these people. A thorough case history and symptomatology can also be a strong indicator. If the symptoms exist and the person is not getting these nutrients amply in the diet, it’s likely they will benefit from the addition of the lacking nutrients. The good news is the problem is rather simple to correct, but my advice is to always have a hair and dietary analysis to guide personalized treatment.
Which supplements help correct it
Pyroluria treatment usually consists of supplementation with B6, zinc picolinate, magnesium, CLA (a fatty acid), manganese (especially if there are tremors), food based vitamin E, and a B complex. In my practice I frequently add probiotic foods to the treatment to address the role the gut biome plays in excessive HPL, and add in amino acids specific to the client’s needs. Amino acids are the backbone of neurotransmitters and are essential for treating mood disorders. Wheat and gluten are removed if Celiac disease is suspected.
In my son’s case, the symptoms abated slowly but a new one emerged with treatment. He went around picking things up and sniffing them. The psychiatrist wanted to diagnose him with OCD but Dr. Hoffer dismissed that saying, “He’s getting his sense of smell back. Zinc is responsible for our sense of smell. Take him to one of those soap stores and let him experience different smells and the sniffing will pass soon enough.” Dr. Hoffer was correct. Had I not had him to consult my son would have had yet another diagnosis and more medication added to his care. I wonder how many people this happens to.
In Marla’s case, adding the supplements and a superfood protein smoothie once a day turned things around. Benefits were noticed in under six weeks and by eight it was clear the problem was really improving. This is remarkable, given how long it takes to get improvement from pharmaceutical therapies for mood and anxiety disorders. It begs the question why don’t we start with nutrition and deficiencies first?
If you or anyone you know is suffering from suicidal feelings there are help lines to call in a crisis. But I hope after reading this you won’t forget the importance of nutrition for long term care! Thank you to ‘Marla’ for allowing me to share her daughter’s story. As always, if readers have their own health questions, I welcome them! Just send me an email at [email protected]. And if you’re looking for more specific health information check out my website at hopenotdope.ca.
Namaste!
Nonie Nutritionista
