Top 10 Tips For Managing Pyrrole Disorder (Pyroluria)

Life with Pyrrole Disorder can be a tough gig! Here’s my ten tips to help manage everyday life for those who are struggling. I’ve been there and these help me.
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Pyroluria tips
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I was reading through some posts and comments earlier today on a Facebook support group for Pyrrole Disorder sufferers. I’m a member of a couple of these groups, and I find them to be great places to pick up information, as well as helping me to remember that it’s not just me (because sometimes it feels like it is…

They’re also great for making the occasional request for advice, or the thoughts of others who are going through the same stuff.

As always, after catching up with the latest in these groups, I came away feeling grateful. Reading the posts about how much some others are suffering makes me realise how fortunate I am that I’ve managed to ‘manage’ my body for all these years, enough to lead a fairly normal life (or at least look like I am

So many Pyrrole Disorder sufferers are really suffering and confused, and I totally understand where they’re at.

From the ecstasy of diagnosis, to the misery of treatment…

I know that when we are diagnosed with Pyroluria, it’s all too common to be ecstatic. Because after  years of searching for answers (as is often the case), and feeling like a crazy hypochondriac, we’ve finally found out why we have all these bizarre problems going on.

But then, for many of us, when we start on the Pyrrole supplements that are supposed to make us feel better, we actually feel worse.

Everything becomes really confusing, life feels really hard, and sometimes it all feels quite hopeless.

I get that.

I’ve been there (and I still go there at times).

But for me, things are slowly getting much better. To be honest, I think I was blessed with an inquisitive mind, an affinity for researching and finding what I need, as well as an ability to hear my own inner voice (although I don’t always listen!), and so I’ve always been fairly good at managing my symptoms.

And so I thought I’d share my ten top tips (try saying that fast 😉 ) for managing Pyrrole Disorder. These are the strategies that I’ve discovered help me to manage my mind and my body, to live my life in a way that works, and that get me through each day when ‘getting through the day’ becomes a challenge.

Also why not subscribe to my Youtube channel for updates on my journey? (and don’t forget to hit the bell to be notified of new videos!).

My Ten Tips For Managing Pyrrole Disorder (Pyroluria)

1. Supplements

Pyrrole disorder (Pyroluria) causes marked and chronic deficiencies of Zinc, Vitamin B6 and GLA. Due to those deficiencies, other nutritional deficiencies are also common. Therefore I (and most others diagnosed with Pyrrole disorder) take supplements by the handful.

I was fortunate enough to notice a difference quite quickly after I started taking my supplements (a marked reduction in anxiety within weeks).

Prior to supplementation, I had been experiencing an increasing difficulty with being able to talk to people (most people – even family). I found myself increasingly wanting (or needing) to get away (often desperately) due to an indescribable discomforta  feeling of fear or intense tension inside my body. This made life, and making a living, quite difficult and stressful as you can imagine, and I was living in fear of the day that it completely took over me. 🙁

My blessing however, was that my pyrrole supplements improved this enough to make a huge difference in my life, and for that, I was willing to stick out whatever other problems the supplements caused.

And there were, (and still are) problems. Unfortunately it hasn’t been plain sailing due to copper detox and other issues, and while I’m not sure if I’ll ever be where I’d ideally like to be, I’m optimistic.

I started treatment on compounded supplements that were prescribed by my doctor, but since our move back to New Zealand, I’m taking individual supplements. I order most of what I take from Iherb as they are the cheapest source of quality nutritionals that I’ve found. The brands that I’m using seem to be doing the job pretty well.

One advantage I’ve discovered to taking individual supplements over compounded, is that it allows me to experiment with dosages a little, although I still so far, tend to mostly stick to around the amounts that I was first prescribed.The following is a list of the supplements that I use with direct links to the products at Iherb:

✅ Thorne Research Double Strength Zinc

✅ Life Extension Vitamin B6

✅ Thorne Research P5P

✅ Healthy Origins Alpha Lipoic Acid – (Removes copper and heavy metals)

✅ NOW Food Blackcurrant Oil – (GLA)

✅ NOW Foods Biotin

✅ Magnesium 

✅ Magnesium OilI also take vitamin E. I was taking the Thorne Research Ultimate E caps, but they contain medium chain triglicerydes and I’m not sure that they agree with my belly. So I’ve switched to Thompsons Brand which I buy from Health Post here in New Zealand.

Please note: I haven’t posted my dosages here as they probably won’t be relevant to you. Please seek the assistance of a qualified naturopath or medical practitioner who has experience in treating Pyrrole Disorder. 

2017 Note: I was taking a stem cell supplement for 12 months up until November 2017 which I had written about here. However I gradually realised that it wasn’t doing good things for me and so I removed information from my blog about the product as I don’t like to recommend anything I don’t personally use. You can read more about what happened when I took this supplement in my post about Pyroluria and weight gain.

2. Clean diet

This means eating a clean, wholefood diet. Avoiding chemicals and reading ingredient labels.

What I’ve found in my own experience (which seems to be the same for most others with pyroluria from what I’ve read) is that we don’t ‘do’ junk food. We need to eat real food – home cooked as much as possible.

We need to avoid gluten and a grain free diet is often a better choice for us (although I personally seem to be able to eat rice without any obvious problems).  A Paleo style diet seems to work best for us, and again from my own experience and that of others, a vegetarian diet can make things much worse due to a lack of zinc and abundance of copper found in plant based foods.

3. Heal your gut

I can’t tell you how important this is. For me this is the one ‘thing’ that made a huge difference.

Zinc deficiency can cause leaky gut syndrome and all manner of digestive problems. Combine this with stress induced irritable bowel, and resulting food intolerances, and you have a real recipe for misery and ill health.

Your gut health controls your brain!

I spent over two years on the GAPS diet, starting off on bone broth and meat only. I initially removed ALL fiber from my diet for a couple of weeks, and then gradually introduced a little at a time. The full protocol and information about how and why the GAPs diet works can be found in the book, Gut & Psychology Syndrome by Dr Natasha Campbell, creator of the GAPs diet.

Some people I’ve spoken to say they’re not committed enough to do this. That it’s too much hassle… ? FFS…. If I can make bone broth and consume it every day for 18 months while traveling around Australia in a campervan with an outside kitchen, battling flies and dust…

Seriously, the problem is that if you have Pyrrole Disorder and you have leaky gut, then it is essential that you get your gut on the road to repair before you can start to heal the rest of your body. If you don’t focus on this one thing, then I believe that you will never reclaim your health.

Just ask me if it was it worth making bone broth for two and a half years… In a campervan, in the dust… My answer? Hell yes! I doubt that I’d be feeling the results from my supplements as quickly if I hadn’t.

I’m very, very grateful that I’d already been on the GAPs diet for over two years prior to my diagnosis.

4. Avoid chemicals

Those of us with Pyrrole Disorder tend to have messed up methylation pathways and so we don’t detox well. Therefore I think we often find that we need to avoid chemicals more than other people.

I know I do!

I’ve been sensitive to chemicals for years, and even though I find that since taking my supplements I don’t seem to be as sensitive, I still avoid them.

For years I’ve used baking soda and white vinegar at home to clean and when other products are needed, I buy as safe as I can.

I’ve also used a range of personal care products (hair care, skin care etc) and cleaning products for the last 15 years that work better than their supermarket counterparts (they actually do what the others say they do but don’t) and yet they’re safe.

Safe for me and safe for the planet. 

You can take a look at these products here. If you decide to try some of these products, use my referral link to get a discount on your first order. (I really recommend the toothpaste and the laundry powder – they’re great!).

Rescue remedy5.Rescue remedy

I’ve carried this stuff around in my handbag for years, and I’ve gone through many months and years where I used it on a daily basis.

If you’ve not heard of Rescue Remedy, it’s a flower remedy (similar to a homeopathic remedy) that helps to calm…. It’s great during times of stress and works brilliantly on humans (and animals!) You can find it at Iherb and at Healthpost.

6. Harkers Stress Tonic

Since my move back to New Zealand, I’ve fallen in love with this stuff. It’s a pretty awesome mixture of herbs that help to combat the effects of stress in the body. I’m not sure if you can order it overseas, but I buy it from Health Post here in New Zealand.

I take it when I’m travelling or feeling a bit stressed and it really makes a big difference to me.

7. EFT or Tapping

EFT stands for Emotional Freedom Technique. I use it every day and don’t know how I would have managed the last couple of years without it. It is truly a life-changer once you get the hang of it.

I’ve written about it before so I won’t repeat myself. You can find out what EFT tapping is about at this website or you can read my article about EFT here.

8. Exercise

I’ve exercised most days of the week for years, and at times I’ve been quite the exercise addict!

I know that regular exercise has helped me over the years – lots!

However, I had to stop exercising completely when I started on my supplements as it became apparent that even light exercise would cause me to sink into a huge depression the next day. I eventually realised that it was copper dumping that was causing that, and wrote about it here.

After 18 months or so on supplements, I’m happy to report that I’m getting back into some walking, and even a little weeny jog here and there and I’m enjoying it.

For the most part I’m getting back to feeling good after exercise which is awesome, but I can tell if I’ve overdone it as that all familiar low mood rears its ugly head. It’s still a bit of a juggling act, but I’m happy to be back doing a little, and I’m looking forward to that good feeling that I relied on after my workouts for all those years.

9. Meditation

The benefits of meditation for stress and health have been proven in many studies. I meditate sporadically….  I need to make it a ‘habit’. It does become quite addictive when I do it regularly, but for some reason it still manages to drop off my daily to do list.

I’m also not very good at it – yet! Practice makes perfect.… But still I feel the benefits when I do do it.  🙂

This book ‘How to Meditate’ by Pema Chodron is on my ‘to read’ list!

If you’ve never tried meditation, give it a go.  If you’re a meditation junkie, good on you!

10. Lifestyle changes

Last but very definitely NOT least, are lifestyle changes. This depends on your lifestyle, but might include things like a change of occupation, listening to music, taking time out to relax, reading, or doing things you enjoy.

For me (recently) it’s been a change of occupation back to being a self employed massage therapist. It’s also finding time to read, paint and exercise. Doing the things that make me happy, because after all that’s what life is about – being happy!

My motto now is ‘take the easy road’.

If it feels too stressful or hard, I give it a miss (as much as possible anyway). When we take the path that makes us feel good, gives us joy and allows us to feel peace then our bodies (and life) work better. That’s just the way it is…

Blessings

sue-signed
P.S. – 2018 Note: When I wrote this post, I found ten things (conveniently – it was a nice even number….) that had helped me manage my Pyroluria and live a happier, less anxious life. But now I need to add this one more thing and make it an odd number – essential oils.

11. Physical & Emotional Support With Essential Oils

I’ve used essential oils on a mostly daily basis for probably 20 years or more. Only certain oils in certain ways, but they’ve definitely been a constant part of my life. However I didn’t really think too much about it (although I did mention a couple of oils in my little book on home remedies that I wrote back in 2013).  I realise that oils have been a part of my coping strategy for a very long time.

So I’ll be writing more about my experiences with essential oils and how I use them in the near future, but in the mean time, I recommend now that I know better) for yourself, you can do so by visiting my site and clicking either Shop for retail prices, or Join and Save to open a wholesale account and save 25% on all your orders as a wholesale customer.

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7 comments
  1. Avatar David bradbrook says:

    Thankyou for sharing what has helped you..honestly it felt like I was listening to myself & it means the world to know that someone else is going through the same pyrrole challenges as myself. Even though my partner knows I have pyrrole & has been extremely supportive she just does not understand the full extent of how it effects me & claims that a lot of my symptoms are exacerbated by the way I react & says I focus on it way too much..I know to some degree she is right but I can’t help but want to research & try & figure out the answers..i have been on the supplements for 2 years now & think I now have issues with my liver in regards to copper & not being able to detox properly..i have just sent off my hair mineral analysis & am waiting for the results. I am hoping to figure this all out soon. Thanks again. Dave Bradbrook

    1. It’s good to know you’re not the only one going through this – I know. It’s almost as good as finding out there is actually a name for it all! I’m now at 3 and a half years and feeling pretty good, so keep on going. I think it’s really hard for those without PD to have any idea of what it can be like for some of us and it’s really hard NOT to focus on it when it affects your life so much. Good luck with it all. 🙂

  2. Avatar logan ericson says:

    Hi Sue,
    thanks for sharing your story. It is really cool seeing that someone else went through what I have been going through.

    1. No problem Logan. It’s always good to know you’re not the only one and that other people have some understanding of what you’re going through. 🙂

  3. I need to talk to u please….my email jraavi2@gmail.com please….guide me to get out of this

    1. Hi Jayanth. I can’t guide you – all I can do is share my own experiences in the hope that they might help others like yourself. Pyroluria is challenging to say the least and each of us is a bit different. There’s no certain way that will help everyone, but there are some basic things we can do (supplements, diet, lifestyle). My health, while so much better than it was, still isn’t perfect. I’ll be writing more about that in the near future. I wish I could tell you what to do, but I can’t. I feel for you. I really do. xx

  4. Hi Sue! Just been reading about your journey! I’m about to return to NZ to live after nearly 29 years. I was diagnosed with pyrroles several years ago and been taking the pyrrole primer compound. I’m trying to find a doctor where I’m moving to (Dunedin) but it is not proving easy! If you know of anyone!
    Thanks
    Mike

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