Healing Pyroluria… Part 2

Healing Pyroluria… Part 2

Jules-Galloway-healing-pyroluria-naturopath-resized

A few months ago I wrote a blog post about my recent diagnosis of Pyroluria, or pyrrole disorder. I’d been struggling for what felt like forever with a myriad of niggly health problems, most of which improved on a wholefood, gluten free, dairy free and cane sugar free diet. But they never fully went away. I talked about the anxiety, the depression and the fatigue. Ugh, the fatigue. If you haven’t read my earlier post, you can do so here.

I nearly didn’t hit “publish” on that post, out of fear that you would think that I wasn’t “perfect.” How dare a naturopath get sick! How can I help others when I’m suffering my own setbacks? Should I admit that we’re just as vulnerable as the next person?

But I sucked it up, hit “publish,” and I’m very glad I did – because it’s now my second most popular blog post ever! Yep – ever! (Number 1 was my Open Letter to Michelle Bridges).

If you’re reading this, chances are you suspect that you, or someone close to you, may have Pyroluria too. (Hey, we can be pyrrole buddies!) Or maybe you’ve already tested positive and are navigating your way back to health. I’ve received a lot of emails asking the best way to get tested, what follow up tests to do, which approach to take to heal the body, and the potential side effects of treatment. So here’s Healing Pyroluria – Part 2. In this blog post, you’ll read the system that I adopted for myself, and that I will implement for my clients. I hope it helps to answer some of your questions.

How I got tested for Pyroluria

I referred myself to Nutripath for a Mauve Factor (Kryptopyrrole) test. This is the gold standard of testing in Australia at the moment. It’s a urine test that can be a little tricky to do. Firstly I had to go off ALL supplements for 4 days, so as not to skew the results. Next, I had to pee in a dark room (yep – totally dark!), and wrap the specimen jar in foil, as the sample can easily be affected by light. Next, the sample had to go into my freezer, and once it was frozen solid, it was off to the collection centre.

The next step…

After getting a positive pyrrole test result… you guessed it… more testing. You see, when pyrroles are high, they bind to your zinc and B6 and carry them out of the body without letting them be absorbed. When zinc levels drop, copper levels can increase (copper and zinc have a see-saw relationship – if one’s up, the other is likely to be down, and vice versa). So we needed to see where the following levels were at:

  • Copper
  • Ceruloplasmin (the major copper-carrying protein in the blood)
  • Zinc
  • Histamine (which may indicate methylation issues)
  • Homocysteine (a marker of inflammation)

A regular copper test only tells you half the story. By testing the ceruloplasmin, you can then determine the amount of “free copper” in the blood – this is the most important number to know, as “free copper” is the one that causes the most health issues when elevated.

My results

My zinc was low, my histamine was high (I’m undermethylating- more about that some other time), and my free copper was high too.

It’s no wonder I’d been feeling like crap.

I can only imagine what the readings would have been like if I’d been eating a standard Aussie diet with all the gluten, dairy and sugar, if I hadn’t been doing yearly detoxes, and if I hadn’t been avoided chemicals and additives in my food and environment. I think I would have been very, very sick indeed.

Supplementation

I started on a “pyrrole primer” – that’s a combination of nutrients specifically for those with pyroluria. It includes high dose zinc and B6, along with magnesium and some trace elements. You would never just take this combo without a positive lab test result, as the levels of nutrients in this formula would be considered toxic in a a person who didn’t have this disorder.

And then the side effects hit…

Copper dumping

You might be thinking “Let’s just take a bunch of zinc and watch the copper go down.” If only it was that simple! You see, the higher your free copper levels, the more careful you need to be, because you may be in line for something called copper dumping. This is where, in response to increasing zinc levels, the copper starts to come out of storage (it can sit in your tissues and organs), spiking the levels of copper in your blood. You basically feel poisoned all over again. Cue – a resurgence in all the nasty symptoms, especially the mental ones. Anxiety attacks are common, as are episodes of depression or mood swings.

(Side note – if this happens to you – don’t suffer alone! Contact Lifeline or Beyond Blue for some help.)

I’ve had what I think were 2 copper dumps since starting the treatment. The first happened the day after I took 2 capsules at once, instead of spacing them out at different ends of the day. The next day the fatigue came rushing back, along with what I could only describe as the worst PMS ever… except I wasn’t getting my period. It passed in a few days but it was a tough time.

The second one was particularly nasty. It came on after I upped my exercise regime quite significantly. I later found out that increased cardiovascular exercise can help bring on a copper dump. This episode lasted for more than 4 days, and it was accompanied by some really nasty symptoms, and I can honestly say I wouldn’t wish it on anyone. I still have ringing in my ears and a few headaches, even though it was a couple of months ago, although it’s starting to fade now (yay!).

I’m now experimenting with a new supplement regime to help clear the copper out faster. It includes a fairly high dose of vitamin C and some liver herbs. I’ll let you know how I go – watch this space!

Despite these setbacks, I am stoked to report that I feel happier, healthier and more energetic than I have in years. The past 6 months have been up and down, but if I compare how I feel today to how I was late last year, there’s a world of difference. I have a much longer attention span than I used to. The foggy brain has lifted. My moods are improving. I don’t get overwhelmed as easily when I’m busy. Travel doesn’t knock me around as much as it used to. I’m doing more exercise, sleeping better, and sometimes I even remember my dreams (I hardly ever did before). I no longer feel life I’m struggling to keep afloat.

The only time I get into trouble now (apart from those pesky copper dumps!) is when I’ve tried to put too much on my plate (hellooooo… typical Type A personality here!) or forgotten to take my supplements. 

Even though I’m feeling better, I’m not 100% of the way there yet. I have to remember to treat myself gently, not put too much on my plate, take time out to practice mindfulness and relaxation and really tune in and listen to my body’s needs. Yeah – just ALL the things I’ve been telling my clients to do for YEARS! I will also be re-testing my copper soon, to see whether it’s changed much. It can be a long road back, but I’m hoping the markers will indicate that I’m on the right track.

Everyone’s game plan for pyroluria is going to be different. This is one of those times when an “out of the box” approach may not apply. So much depends on copper levels, zinc levels, methylation, diet and lifestyle factors. It’s important to work with a naturopath or pyrrole-friendly GP to tweak your treatment so that it’s perfect for you (yep – even I see someone too!).

If you need help navigating the process, I’m also available for 1-on-1 appointments here. Or feel free to leave a comment on this post with any questions you may have. Have you been diagnosed with pyroluria? Let us know how you’re going with your treatment!

29 Comments
  • Heli
    Posted at 16:20h, 24 May Reply

    Thank you for sharing Jules. I have pyrole disorder and mfthr x2 under methylation too. Low zinc, low b6, But my copper levels are also LOW!? I’m Feeling better with kpu sups but the persistent low copper really intrigues me?

    • Jules Galloway
      Posted at 22:59h, 24 May Reply

      Hi Heli, That’s the reason why it’s so important to calculate your free copper. It’s possible to be low in copper and still too high in free copper, which has its own set of health challenges. Getting ceruloplasmin checked is the key to figuring this out.

  • Jane
    Posted at 17:07h, 24 May Reply

    Your blog post exactly matches what I have been through, it’s no fun. I managed to get my copper down, but couldn’t get zinc up due to being intolerant to both topical and oral zinc. So I had intravenous zinc for over a year. Finally it came up. Nowadays I can take zinc orally, occasionally I remember my dreams and other symptoms have either gone or are much more manageable.
    I’ll be watching your journey with interest, all the best.

    • Jules Galloway
      Posted at 23:00h, 24 May Reply

      Thanks Jane, glad you’re on track now too 🙂

  • Sarah
    Posted at 17:25h, 24 May Reply

    Hi Jules, thanks so much for you’re info. Very interesting to follow you progress. I was wondering if you made any specific changes to your diet? My daughter and I have PD but are not GF or DF and I sometimes wonder if we should be.

    • Jules Galloway
      Posted at 23:02h, 24 May Reply

      I noticed a lot of changes when I moved to a GF and DF diet, even before I was diagnosed with pyroluria. Gut healing is so important in recovery, and going GF and DF gives you a better environment in which to do this work.

      • Tamara
        Posted at 14:27h, 27 February Reply

        Hi there,
        Do you advise complete elimination of dairy or just lactose?
        I have just been diagnosed also and am on the Low FODMAP diet, so keen to hear:)

        • Jules Galloway
          Posted at 11:48h, 06 March Reply

          Hi Tamara,
          Because some people have issues with casein (the protein component of dairy) rather than lactose, I usually advise complete elimination of dairy in the early stages of treatment.

  • Erin
    Posted at 02:03h, 12 August Reply

    Thank you so much for sharing this! I can’t wait to talk to you more about my son. I think it helps so much that you have gone through this yourself!

  • Delrene Insch
    Posted at 09:49h, 11 December Reply

    Hi Jules I have jujust been diagnosed with kryptopyrrole disorderI would like to ask you what juices you use to help this condition please? Y levels were 29.5

    • Jules Galloway
      Posted at 19:03h, 11 December Reply

      Hi Delrene,
      I don’t use juices to address pyrrole disorder directly, however, I do include juices to support the liver and detoxification pathways, as part of a holistic approach. I love lots of greens, beetroot, carrot, turmeric and lemon in my juices.

  • Maddison
    Posted at 12:24h, 07 March Reply

    Hi Jules,

    I love reading your blogs! Thanks so much for sharing your story. I had a high pyrrole reading of close to 100! I also had low zinc, high copper and under methylation. I have been on treatment for around 2 months now but I am still feeling a lot of tention in my head and neck and also very spaced out and unbalanced most days. Did you experience this? I am hoping it will go away as the levels come back down to a normal range! Thanks so much, Maddie.

    • Jules Galloway
      Posted at 14:23h, 07 March Reply

      Hi Maddie, yes I has similar symptoms to what you described, and a lot of my clients report feeling the same way. It can take a while for the copper to come down and for methylation to normalise, but stick with it – it’s so worth it!

      • Leah
        Posted at 14:24h, 08 December Reply

        I have recently been diagnosed and describe (among other things) feeling as though my whole body is tight, like I wish someone could just cut a string in my middle to let me feel relaxed. This is all the way through my body but particularly in my head, neck, upper back , chest and pelvis.
        Anyone else?

        • Jules Galloway
          Posted at 11:55h, 21 December Reply

          Hi Leah,

          Tightness and tension in the body is common in people with pyrrole disorder. It’s often due to low levels of magnesium in the body (it’s hard to absorb magnesium when B6 is low), and often there’s a high degree of inflammation present too. Have you also been to see a bodyworker/osteopath/chiro etc, to see if there’s anything that needs adjustment?

  • jules
    Posted at 13:30h, 15 March Reply

    hi jules so lovely and encouraged to hear your story. i am in sydney can someone pls recommend a good dr to treat pyrolle? whereabouts are you Jules? . i am on antidepressants and have adrenal fatigue and fibromyalgia which has flared up due to recent mum passing away and very stressful time. dr suspect pyrolle and test result was 27. zinc serum was low but copper was normal. she didnt do ceruplasmin . does that mean is not accurate? i got migraine and start seeing floaters, neck and shoulder stiffness and pain and anxiety attacks and palpitations…. going nuts? anyone experienced this? is that related to all this detox? she never told me the side effects except nauseous. i am also taking msm which helped my brain fog for my fibromyalgia.

    • Jules Galloway
      Posted at 16:47h, 15 March Reply

      Hello 🙂
      I’m based near Byron Bay, but I also offer Skype and phone appointments, so organising a consultation with you is super easy. Head to http://julesgalloway.com/work-with-me to make a booking. If you’d prefer an integrative GP, email me at hello@julesgalloway.com and I can ask around for you. I’ve found that copper readings don’t mean much unless you test the ceruloplasmin (that’s the copper-carrying protein in the blood), so there may be a couple of follow up tests that you will need to do. Going in hard with supplementation (especially zinc) without knowing the full copper picture may lead to nasty side effects like the ones you mentioned (known as “copper dumping”) but this can often be avoided by testing first, and then tweaking your supplement regime.

      • Tamara
        Posted at 14:30h, 27 February Reply

        DR Catherine Morris in Pymble

  • Kami
    Posted at 19:10h, 26 March Reply

    Hi Jules,
    Glad I found your blog.
    I was diagnosed with pyroluria 2 years ago. My level was 87! Also had extremely high copper, low zinc and undermethylation. I have been on p5p, magnesium, zinc, vitamin C, NAC and B6 consistently for 2 years. I have an 11 month old daughter who I breastfeed, I’m currently 14 weeks pregnant and am desperate for some extra support given the stressful season of life I am in. Thank fully I am able to stay at home with my babies and don’t have the added stress of work (which I feel would push me over the edge)
    I just want to be the best Mum and Wife I can be and am tired of pyroluria being a constant excuse for not coping well. I’m considering changing my diet, I’ve seen that you are on a paleo diet? Is there anything else you would suggest that might help? I’m spending lots of money on supplements and seeing an integrative GP which I’m happy to do but I’d love to feel better than I do. Maybe I just need to get through these early years first? I haven’t had my levels tested since my initial diagnosis and am also not sure if I should given that my hormones are no doubt all over the place.
    I do exercise regularly and am generally healthy but I’m thinking I need to take that to the next level.
    I’m also really concerned for my children inheriting this and would love to give them the best chance at a balanced life.

    • Jules Galloway
      Posted at 19:40h, 26 March Reply

      Hi Kami, it sounds like you’re in great hands with your integrative GP. Getting copper down can take a fair while, so sometimes in the early stages it feels a little like “2 steps forward, 1 step back.” I’m mostly paleo (I eat a little bit of rice and corn) and I find that a gluten, dairy and cane sugar free diet is a MUST for most of my clients (again – speak to your practitioner about what’s right for you). Putting lots of good stuff back in with wholefoods and nutrient rich foods is just as important as what you take out too, so focus on that when you feel overwhelmed. Good luck with your recovery! xo

  • Pingback:Episode 50 - Healing Chronic Fatigue - Jules Galloway - Naturopath
    Posted at 12:15h, 26 April Reply

    […] By the way, if you haven’t seen my blog posts on pyrrole disorder, click here and here. […]

  • Steve Thompson
    Posted at 14:58h, 03 August Reply

    Hi Jules.

    Nutripath don’t have a good reputation. A much better lab for the Urinary Pyrrole Test is Applied Analytical Laboratories in Gold Coast. Best if the unrine sample collection is done at a pathology collection centre where the staff are trained in the correct collection, packing and transport protocols, rather than at home.. The sample does not have to be collected in complete darkness. It just needs to be protected from sunlight. A few minutes in room light while it’s being packed is fine. BUT, it’s vital that the sample is immediately frozen and remains frozen until it reaches the lab. HPL degrades very quickly if the sample is allowed to thaw.

    • Jules Galloway
      Posted at 18:32h, 04 August Reply

      Hi Steve,
      Nutripath have changed their procedures recently, and the sample is now immediately frozen at the client’s home, and then picked up and transported on dry ice with a courier – so I have every faith in the integrity of the sample for the whole journey. It’s GREAT to know that a little bit of light doesn’t hurt the pyrrole count – my clients will be happy with that one (helloooo… no more peeing in the dark, haha!).

  • Amber
    Posted at 13:43h, 10 February Reply

    Hi,
    I was first diagnosed last May with Pyroluira level of 202, low zinc, 40-45% free copper, under methylation and then in October discovered 2xMTHFR gene mutation of same gene. I’ve seen 3 integrative doctors and moved 4 times across 2 states since diagnosis and i’ve been back in the country just over 1 year after being away for 8 years. Since taking minerals tinnitus has disappeared, and the edge has been taken off the anxiety, depression and insomnia but i wouldn’t say it’s gone or that i feel good. I’m nervous to get a job as i might not be able to handle it and i’m not enthused about being back in my home town but it’s also not bad. I’ve got to be making life decisions but it increases my anxiety etc. My concentration is slowly improving but don’t have a job to challenge it. I’ve become even more of a social recluse since returning to hometown.
    The first doctor said that it’s pointless to see a councellor until mineral and thus neurotransmitter levels are sorted because one can’t process trauma or integrate constructive thinking/processing. I’m finding it hard to make decisions for my life especially around work and living. When have you found it beneficial to seek councelling? Have you found it helps if the councellor is aware of how pyroluria plays out?
    Do i just need to be more patient? And just act on getting a job etc irrespective of how i’m feeling and wait for the body to balance? I feel like, again, I am putting my life on hold while my body gets sorted out.
    Are there any support groups? I’m finding it hard to communicate with anyone. Maybe talking to people in the same situation/diagnosis would help and also know I’m not the only one struggling.
    I’m grateful for diagnosis as it explains why I’ve been struggling all my life and no treatment or diet has ever fully helped.

    • Jules Galloway
      Posted at 16:03h, 13 February Reply

      Hi Amber,

      I think that if you want to start counselling, start counselling. I think that it could definitely still have benefits while you’re waiting for your biochemistry to come back into balance.

      It can be a long process for some (unfortunately) as it may take a while for copper loads to reduce, gut healing to take place, etc. So yes, you may need to be patient, but if you’re on the right track, you should also be noticing some little improvements along the way. If you completely stall in your recovery though, it might be time to see your practitioner or get another opinion.

      There are some pyrrole support groups on Facebook, but just be careful taking advice in those forums from people who aren’t qualified (what works for them may not work for you). I think these groups are great for building connections with like-minded people, and helping to realise that you’re not alone.

      Good luck with your recovery!

  • Brittany Faye Webb
    Posted at 07:54h, 26 April Reply

    Would you say I have a true pyrrole disorder if my urine results were at 16.75 and anything over 16 is considered pyrrole? Do you think in this case because it was just barley over I should consider re-testing?

    • Jules Galloway
      Posted at 20:54h, 02 May Reply

      I wouldn’t consider re-testing the pyrroles, but if a patient came to me with that reading, there are follow up tests that I would consider. Because 16.75 is considered “borderline” I would instead look at the impact it has on you, not the number itself. So I would be looking at markers like zinc, copper, ceruloplasmin, to get a better insight into what’s happening, before deciding on what types of supplementation to give.

  • Laura
    Posted at 11:15h, 07 October Reply

    Hi Jules,

    Just came across your article, my Pyrroles have come back at 40.
    ( I didn’t have to cease supplements before doing this test though so hoping that is accurate, I did it through Applied Analytical Labs).
    I’m undermethylating, but tested negative for both strains of MTHFR.
    I’m wondering in your experience if you’ve seen any association with this and miscarriage?
    I’ve had 2 missed miscarriages this year.
    My other symptoms would be hormonal imbalance – low progesterone, high oestrogen, high androgens (PCOS).
    Mild anxiety and sometimes insomnia – I put this down to the emotional trauma I’ve experienced this year though.
    And definitely a low stress tolerance.
    I am seeing a naturopath but also trying to do my own research on accepting this as my reason for miscarriage before trying again. The theory being my lack of B6 & Zinc not producing a high enough level of progesterone, causing my pregnancies to stop developing between the 8-9 week mark.
    I’ve been prescribed Pyrrole support primer and evening primrose oil.
    Thanks

    Laura

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