My story

by Sue Kira, Naturopath & Clinical Nutritionist

Since I was diagnosed with pyroluria in 2009, I have been extensively researching everything about pyrrole disorder, methylation defects, genetics, gut healing and pretty much anything that remotely relates to pyrrole and the underlying reasons why certain people didn’t respond the way I thought that they should to certain treatment regimes.

Over the last 28 years in my practice I have witnessed remarkable transformations for thousands of my clients because of recommended dietary, supplementation and lifestyle changes. I’ve had a huge number of successful outcomes, but there were also those that just seemed to ‘fall through the cracks’ who I couldn’t really seem to help as much as I would have liked.

I was one of those people. When I took supplements for certain ailments over the years, they often made things worse, but when I ate the right foods to help heal a condition, that worked very well.

As I began to really understand pyrrole disorder and the associated genetic influences, it took things to a whole new level as I realised that the key was understanding how to use specific nutrient foods to support certain genetic defects…and that made all the difference.

I’ll explain. In the late-80’s I had a miscarriage which I put down to not having enough folate in my system. I already knew that I reacted to folic acid tablets and couldn’t take them. Also, if I took B6, which is supposed to help with morning sickness (which I had) I would get anxiety and the morning sickness became more severe. Many other supplements also created reactions in my body.

Leading up to my next pregnancy about a year later, I knew I had to look after myself in other ways, particularly with diet and lifestyle. So every day, I ate strawberries and three cups of leafy greens which are both full of natural folate. During the first trimester of pregnancy I couldn’t stomach the greens so I had lots of organic home grown strawberries each day. I also focused on foods rich in B6, B12, iron, folate and magnesium.

My choices helped me to keep the next two babies who are now my darling (adult) children.

Moving forward to 2009, I visited an integrative doctor about my hot flushes that weren’t responding to the herbs etc that I had successfully prescribed for many of my clients. She suggested testing for pyrrole, about which I had very little knowledge. I was diagnosed with pyrrole disorder and recommended to take high doses of zinc and B6 supplements, which actually gave me anxiety and made my menopausal symptoms worse.

So I started to extensively research pyrrole and realised there was much more to pyroluria than just having elevated levels of pyrrole – there were genetic influences, amongst other things. Consequently, I had a genetic test and continued to delve into this fascinating field.

My genetic tests revealed that I had a compound homozygous genetic defect (that means both parents gave it to me) to a gene called MTHFR, which is related to folate. It meant that if I took folic acid I would feel terribly ill. It also explained why I miscarried because I did not have enough folate in my system, due to genetics and the fact that I previously took the contraceptive pill, a folate robber.

I also had many other genetic variants in my profile, but once understood, they all made sense and helped to explain certain situations such as hormone issues, digestive issues, the miscarriage and immune irregularities over the years.

With certain genetic defects, it is important to know that some can be supported quite well with certain supplements, but for others, you may find it more healing to use food or a combination of food and supplements to best support your body.

This is not just about healthy eating, but also about focusing on key foods that support what you need at the time.

I’m not saying that you need to know all about your genetics, but it is helpful to see a practitioner who understands genetics, because we now know that certain symptom profiles relate to certain genetic variants, and how you respond to certain supplements also helps to tell your story.

So don’t give up on your practitioner if what they put you on didn’t help, or even made things worse, as this in itself helps to unravel what is going on in your body and why. Greater understanding gives greater power to heal.

I still take supplements such as magnesium from time to time and the occasional vitamin C and zinc tablet if I feel I’m coming down with something, plus a probiotic most days, but everything else is done by diet.

The reason I share this with you is to help you to understand the power of diet and lifestyle factors when treating metabolic disorders such as pyroluria.

There are many people who say that pyrrole disorder doesn’t even exist, that it’s a made-up disorder. But I can assure you that from the hundreds of clients I’ve treated with pyrrole disorder and its associated conditions over eight years, it certainly exists for them and the treatments do work. I have seen the amazing effects that diet and lifestyle changes had on most of my clients with pyroluria.

When I say treatments, for some this is a supplemental regime plus diet, while for others who cannot manage supplements such as vitamin B6 because of a genetic variation, then diet is really the best ‘treatment’.

And then there’s lifestyle factors – the responsibility to look after your mental health and not overburden your body with toxins, chemicals, alcohol, caffeine and sugar and particularly, finding ways to handle stress, without needing substances to do so.

In my case, I like to have quality ME time – walks in nature or a beach or beside a river, regular exercise, massages, Epsom salt baths, meditation, gentle yoga, reading, swimming lazily in a pool (tea bagging as some call it), spending time with my loving husband Rod and our dog Ralphy, plus catching up with our (grown up) kids, avoiding violent or racy TV shows and getting to bed early.

Normal stuff really, but making sure that I don’t let stress build up. Even when I was young, I knew that stress, late nights and poor eating habits affected my immune system. Now I know why.

Some say that pyrrole disorder is nothing more than ‘leaky gut’ and heavy metal toxicity, and I can agree in part with this, but genetic variations also have a role to play in this disorder. But we can’t blame genetics, because this is where epigenetics comes into play. Essentially this means that how we live is far more important than a defective gene or ten.

I would say that how we look after ourselves and what we eat are the most important things in our lives.

Because of the way I now live and eat, I don’t have pyrrole disorder anymore…but if I don’t continue to look after myself, then it can quickly return.

For more information about Pyrrole Disorder please click here

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