Healing Pyroluria… Part 1

Healing Pyroluria… Part 1

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It’s taken me a while to write this. Partly because it’s been a challenge getting my head around it. Partly because I got distracted by Christmas (who didn’t???), but mostly because I’ve been procrastinating about it. To be honest, I wasn’t sure what to say.

It started around this time last year. We’d had a very stressful couple of weeks, which resulted in feeling very run down afterwards.

And then it set in. Aching, bone crunching, soul sapping fatigue. The likes of which I hadn’t known for many years.

Now, if you’ve followed my blog for a while or done one of my programs, chances are you already know I have a history of suffering from adrenal fatigue. But through a gluten free, sugar free, dairy free diet (and often taking it to the level of being paleo), regular yoga, gentle exercise, and some counselling, I found my path to healing.

I thought I was fixed

And I kinda was. Except I didn’t realise that all my good work so far was really only a band-aid solution. All it took was a couple of weeks of intense stress, and I was going backwards. Fast.

Never mind, I thought. I know what to do. So I took some adrenal herbs, got stricter with my diet, and powered on through life.

And it worked temporarily. I bounced back and released my signature program, Shiny Healthy You (ironically a program about… you guessed it… fatigue!) and basked in its success. I received tons of awesome feedback from clients who had done the program.

It felt good to help so many people. Yet my own health setbacks made me feel like a fraud.

Here I was, dishing out advice on fatigue, only to be suffering from it again myself. But I was managing it ok. I didn’t hit rock bottom. But as soon as I had a busy month at work, I felt worse again.

I felt tired every moment of the day, I felt like I was walking around in a fog, and I just couldn’t think straight. Was I suffering from depression? Was it all in my head? I was feeling so frustrated.

Then I started to read about Pyroluria

Also known as kryptopyrroles or pyrrole disorder, it’s an inherited condition where the body makes too much of a substance known as pyrroles, during the everyday production of haemoglobin. These pyrroles bind to your vitamin B6 and your zinc, causing these precious nutrients to become excreted rather than absorbed. Eventually the condition manifests as a serious and long lasting zinc and B6 deficiency.

Signs and symptoms are many and varied, but here’s a few of the more common ones:

  • Lowered immunity
  • Poor quality hair, skin and nails
  • Fatigue
  • Brain fog
  • Mood swings and anger
  • Depression, anxiety and nervousness
  • Leaky gut and food allergies
  • Fungal infections and candida
  • Hormonal imbalances
  • Feelings of being overwhelmed
  • Joint pain, especially knee pain
  • Abnormal body fat distribution
  • Poor dream recall
  • Poor tolerance to light and sounds
  • Migraines and headaches
  • Lack of hunger or nausea in the mornings
  • Skin that burns easily in the sun

But the one I was most interested in was the inability to cope with stress. In fact, the body makes more pyrroles during times of stress, meaning that you end up experiencing even more of the above symptoms.

Not only that, our good friend zinc is also responsible for keeping copper levels in check. Low zinc = high copper. Have you ever looked up the symptoms of copper toxicity? They’re freakin’ SCARY, that’s what. Along with the poor immunity, brain fog, predisposition to fungal infections, various skin ailments and fatigue come the mental health issues. I’m one of the lucky ones, only experiencing anxiety and depression. Experts are now connecting Pyroluria to schizophrenia, Down’s Syndrome, autism, ADHD, bipolar disorder and alcoholism, and it’s most likely due to copper toxicity.

The more I researched, the more I started to freak myself out (a common problem when you’re a health practitioner – you know where to look for the good quality information, and in the process you can often scare the pants off yourself, thinking you have this disease and that disease). I discovered that high levels of pyrroles can be connected with arthritis, irritable bowel, heart disease and even cancer. It was time to take action to find out for sure. I needed to get a Mauve Factor (kryptopyrrole) test.

One urine test and $120 later, I had my answer. The results were off the charts. The reference range was 1-10 and I was sporting a whopping 45! (I don’t do things by halves, it seems!)

No wonder I’d been feeling like shit.

It all made sense now. The fatigue. The food intolerances. The up-and-down symptoms. The candida. The endometriosis. The PMS. The inability to deal with stress like a “normal” person. The fact that a paleo diet only seemed to do half the job.

I finally had my answer. The relief was immense, to say the least.

Rather than decide on the treatment myself (never a good idea!), I put myself in the hands of Dr Rach, a practitioner whom I trust implicitly, since she’s both a GP and a naturopath (the best of both worlds!) and more importantly, a wise and caring individual who has seen and treated many pyrrole and adrenal fatigue patients. She has a special interest in this stuff. She sent me off for further testing.

The results?

My copper levels were high, my zinc low, and also my histamine levels were elevated, which meant I was “undermethylating” (more about that some other time).

I began taking large doses of zinc citrate and P-5-P (these are specific forms of zinc and B6 that are better absorbed), supported by magnesium, evening primrose oil, and a clean diet (no problems with that last one, haha!).

Note: I’m deliberately NOT mentioning the amounts of B6 and zinc here, as everyone’s needs are different. You should always get your own case assessed before attempting to take such large doses, as they may be toxic in a person who doesn’t have high copper or Pyroluria. 

At first, I felt nauseous from the zinc, but it settled down after a few days, and pretty soon I started to notice a change.

The fog started to lift.

I had energy to burn for the first time in ages.

I could actually get out of bed in the morning without feeling like I’d been hit by a truck (apologies to anyone out there who’s actually been hit by a truck – I’m sure it’s MUCH worse…).

I experienced a clarity that I hadn’t felt in a very long time, if ever. I suddenly had an attention span – a handy thing to have when you write blog posts for a living.

I’ve even had a couple of months now with very minimal PMS. And boy is my husband happy about THAT!

Since then, my progress has been up and down. As your zinc levels come up, the body can begin to release its stores of copper, and when this happens, you can go backwards in your recovery for a few days or even weeks. I’ve been eating clean, juicing, keeping my water intake up, doing yoga, and focusing on activities which will encourage my body to detox the copper swiftly and efficiently. Even so, my recovery can best be described as “2 steps forward, one step back.” I have good days and bad days, but the good days are amazing, and the bad days are slowly becoming less.

The wonderful thing about this experience is that, now that my own health is back on track, I have the most current information and tools required to help others deal with this condition. I also have the personal experience of knowing what it’s REALLY like to have Pyroluria. I’ve got inside information. That stuff is priceless. It helps me to help you.

I’ll keep you posted on my progress. I’m learning more about the condition all the time, and I will be doing my best to put information together for you in a way that’s easy to understand and implement.

If you’re interested in getting a Pyroluria test in Australia, contact me at hello[at]julesgalloway.com and I will point you in the right direction. Or click here to work with me via Skype. 

73 Comments
  • Kate
    Posted at 16:23h, 15 January Reply

    This is me down to a T! I’m working with a very pricey wholistic MD and on a similar protocol (sans evening primrose). I have a huge amount of copper toxicity I’m working through which is making it hard to feel good despite working hard with diet and sups. Please keep us posted on your progress!

    • Jules Galloway
      Posted at 16:40h, 15 January Reply

      Thanks Kate. Good luck with your treatment. I hope you turn the corner soon xo

    • Gordon
      Posted at 21:19h, 23 April Reply

      At last I know what’s been wrong with me for the last 57 years. OMG!!! I’ve read so much and chased so many dead ends, but it all fits this time. It confirms what I’ve learnt about zinc, I’m already taking about 125mg/day having found I had to do so to keep fungal infections and low libido at bay. I didn’t think that dosage was enough either, but was scared to go higher. A lifetime of frustration may be about to start ending. Sh…..t.

      • Jules Galloway
        Posted at 12:23h, 26 April Reply

        Hi Gordon. A quick word of caution here… it’s important to know your copper and ceruloplasmin levels before going in too gung-ho with the zinc. Make sure you work with an experienced practitioner when increasing your dose, in order to help prevent toxicity and side effects. Feel free to send me an email if you need help 🙂

  • Kristin
    Posted at 17:07h, 15 January Reply

    Jules, thank you so much for sharing your story with us. Our journey with Pyroluria began three years ago when Frankie tested positive and it has been a two steps forward, one step back process for us too. I look forward to reading more and learning more from you as you go along xo

    • Jules Galloway
      Posted at 17:15h, 15 January Reply

      Thanks for your kind words, Kristin. It’s lovely to know I have your support 🙂 xo

  • lee
    Posted at 19:10h, 15 January Reply

    My daughters both want to get the copper IUD to avoid any hormones. Can zinc taken daily help not to build up excess copper.

    Thankyou.

    • Jules Galloway
      Posted at 19:33h, 15 January Reply

      Do your daughters have Pyroluria? If so, they might want to consider another form of contraception. A zinc supplement can help with copper balance, however it’s not guaranteed to cope with the extra copper caused by the IUD. Please note the levels of zinc required by those with Pyroluria are dramatically higher than the safe range for “normal” people. If someone hasn’t been diagnosed with pyrrole disorder, the safe upper limit is 40mg per day. Also, check out a great post on copper IUDs here: http://www.natkringoudis.com/the-copper-iud-what-you-need-to-know/

  • Marnie
    Posted at 21:01h, 15 January Reply

    Thank you so much for sharing! My husband has Pyrrole’s (his testing came back at 33) and both our children have tested positive as well (both at just over 12) but no one ever mentioned anything about copper…..thank you so much again, I will be following closely on your updates.

    • Jules Galloway
      Posted at 23:12h, 15 January Reply

      You’re welcome, Marnie. I hope your husband and kids are on the road to recovery now 🙂

  • Kylie
    Posted at 11:28h, 16 January Reply

    Hi Julies, thanks for your story. I’ve been looking into pyroluria as a possibility for my 5 year old, and the more i look at it, the more it looks like me too!! Once your B6 and Zn levels are back within normal range, do you drop the dosage of supplements? And are you looking at lifelong supplementation or can the body sort itself out? thanks,

    • Jules Galloway
      Posted at 11:41h, 16 January Reply

      Hi Kylie, in my own case, the dosage of supplements I feel will be something that has to be monitered over time. I plan to have my copper and zinc levels tested every 6 months and then supplementation adjusted accordingly. If and when I do go back down to a “maintenance dose” of zinc and B6, I will be sure to also monitor my stress levels, as more pyrroles are produced when we are stressed and busy. More pyrroles = a greater need for supplements again. Given that it’s an inherited condition rather than an acquired one, the body may not be able to fully sort itself out. For many people, taking supplements may be a long-term arrangement, but it’s going to be different for everyone. I’ve already heard of one family getting great results from homoeopathy rather than loads of supps, so there may be more than one way to treat this. Herbal medicine may be able to play an important role too. It’s such early days as far as the science and research goes.

      • Yana
        Posted at 13:28h, 03 August Reply

        Hi Jules – I’m not sure it is always an inherited condition. I’ve done a fair bit of reading on the topic and I’ve come across many articles that say it can indeed be ‘acquired’.

        For myself, I have had fairly massive health problems – resulting in me being ‘diagnosed’ as having CFS, but also adrenal burnout, candida overgrowth, leaky gut, parasites, hormonal imbalance…etc. I severely crashed 4 years ago and spent 8 months in bed, needing help to even get to the bathroom at one point. I’m improving at such a slow rate, 4 years later I’m still mostly housebound and unable to live a full life, but I’m of course grateful I’m not completely bedridden.

        My pyrolle level was 67. I tested negative for MTHFR. I also had copper literally off the chart, and high histamine. For what it’s worth to anyone reading this with an open mind – before I was tested my naturopath/medical intuitive told me I had Pyroluria – and that it was acquired from problems in my gut. Now, I’m aware that it can run in families, further suggesting that it’s inherited, but I’m still not convinced it can’t be ‘acquired’. Obviously, no-one has all the answers.

        It just seems unusual to me that so many people are testing positive with Pyroluria – and it doesn’t feel right to need to spend $100 a month on supplements – more if there’s other family members involved. Surely we, as a species, weren’t designed to be taking synthetic vitamins for the rest of our lives?

        Please don’t think I’m saying it’s not genetic, I’m just saying please be open to the possibility it’s acquired somehow, or is a symptom of something else going on. 🙂

        • Jules Galloway
          Posted at 16:54h, 03 August Reply

          Hi Yana, you may be right – there is a school of thought at the moment that believes that although most cases are inherited, there also may be some instances where pyroluria has been acquired. In particular this new research found that it may be brought on by certain lifestyle factors (I think their studies mentioned high alcohol consumption as one cause, but there would be other factors too). There is new information coming out all the time, so it’s definitely a case of “watch this space.”

      • Katie
        Posted at 09:27h, 04 August Reply

        Do you take synthetic b6 and zinc or get from foods?

        • Jules Galloway
          Posted at 18:28h, 04 August Reply

          I take supplements at the moment because I feel that I need the extra support.

          • Eugenie O'Brien
            Posted at 03:20h, 27 August

            Hi Julia, my daughter has been diagnosed with pyrolle and undermethylation. Her doctor put her on high doses of zinc and b6 along with 2000mg bit c vit E800 biotin, selenium evening2 primrose oil,Same , magnesium. , and calcium 1000. These are divided in 2 doses daily. She is also on an ssri, she is 17 and is go ding it hard to make so many vita.ins. are there a y she could cut out our cut down on. Would b grateful for any advice.
            Eugenie

          • Jules Galloway
            Posted at 17:06h, 30 August

            Hi Eugenie,
            Thanks so much for your enquiry. Unfortunately I cannot advise on supplements unless the person in question is mu patient. It sounds like your doctor has her on a specific protocol – speak to them if you are concerned, before you try dropping any specific supplements.

  • Jo
    Posted at 13:21h, 16 January Reply

    Thankyou for sharing your story Jules 🙂 I was made aware of Pyrolle Disorder 3 or so years ago but never connected the dots that i may of also had it! My eldest child was excibiting some concerning behaviour 2 yrs ago so i had him and myself tested to tick it off the list. I was quite shocked on discovering we both had it and it helped explained alot about myself and my son. Our pyrolle primer really has made all the difference and during times of increased stress, i up our dosages. I find we also need additional support via lifestyle modification and herbal tonics. I look forward to hearing more about your health journey.

    • Jules Galloway
      Posted at 08:06h, 17 January Reply

      Hi Jo, I’m glad to hear you’re getting the help you need. Sounds like you’re on the road to recovery – well done! 🙂

  • Jo
    Posted at 13:31h, 16 January Reply

    I’m about to get my mthfr results back. I suspect pyrollia but know I have methylation issues. I’m hoping I can treat it all together. I want to be able to string a sentence together again!

  • Bronnie - Maid In Australia
    Posted at 14:29h, 16 January Reply

    Very interesting article as this condition runs in my family, and I have many of the symptoms which has been put down to (mainly) arthritis and associated conditions. What i don’t get is that any of these conditions are so expensive to be tested for and treated. Why are they not covered by medicare? If they are the cause of the condition, the treatment is much cheaper for the health-system and better for the patient than high priced and subsidised medication and multiple specialists’ visits. Glad to hear you are on the mend.

    • Jules Galloway
      Posted at 08:11h, 17 January Reply

      Oh Bronnie – there are SO many tests that I wish were covered by Medicare! Pyrroles is only one of them. It’s very frustrating for me to think about how many people out there aren’t getting the diagnosis, treatment and support they need because of the cost of testing. And when you think about how many undiagnosed Pyroluria sufferers must be on anti anxiety meds, antidepressants, painkillers, etc… it does my head in.

  • Sarah
    Posted at 21:42h, 16 January Reply

    Hey Jules, thanks for sharing your story, it’s great to hear you have more energy now. I have pyroluria and generally poor capacity for handling stress. I recently listened to a talk by Carolyn Ledowsky in an online summit, and she believes that pyrolles is a component of MTHFR dysfunction. I thought it was an interesting connection and something I’m investigating. Good luck with your health journey xx

    • Jules Galloway
      Posted at 08:21h, 17 January Reply

      Hi Sarah, yes MTHFR is on my radar too, although I’ve been told recently that testing for histamine may be a better place to start in pyrrole clients (so many tests, so much money, nothing covered by Medicare). If a person is suspected of undermethylating, you can use histamine levels as an indicator, and then go from there. However, in complex cases I send them for both pyrrole and MTHFR testing from the get-go, especially if I suspect they are carrying two copies of the gene mutation (70% loss of function compared to 30%).

  • Steph
    Posted at 08:13h, 17 January Reply

    Hi Jules. I came across your blog because a friend liked it on Facebook. I have pyroluria and was getting treatment a while ago. I tried it for a few months but found that I wasn’t really getting results for how much it was all costing and then I was struggling financially and stressed about that. I also have methylation problems and other stuff apparently that I don’t really understand. It was cost hundreds for appointments and like $400 in supplements every 3 months and it was all too much.
    It would be good if I could properly treat it but it’s hard to be motivated when I know it’s not possible for me long termm.
    Glad to hear it’s helped you though.

    • Jules Galloway
      Posted at 08:27h, 17 January Reply

      Hi Steph, $400 every 3 months sounds like a lot to me. At the moment, if I was paying full retail price for supplements, it would be costing me around $70-80 per month. I’d be interested to know what you were taking – feel free to email me at hello[at]julesgalloway.com.

  • Steph
    Posted at 08:46h, 17 January Reply

    Because I had high levels and so many other this too, low magnesium, under methylated and something else u can’t remember I had to get compound nutrients I think is maybe why it cost so much. Only one I still take is a magnesium drink powder thing because I found it made a noticeable difference with my muscles and joints… Although I think I might also have a connective tissue dissorder

  • Lisa
    Posted at 08:50h, 17 January Reply

    Jules,
    A friend just sent me your article.
    It’s like I’ve just read my own story!
    I too am in the wellness industry & had been feeling very much like a fraud as I felt that know matter how well I looked after myself, (diet, exercise, mindfulness etc). I’d be feeling really good for a while, then crash and burn, it was a constant roller coaster.
    I tested positive for pyroluria & MTHFR. My pyrole level being at 45 also.
    It’s encouraging to have some answers and now be able to feel more pro active in my healing process (still working out the balance).
    It’s also encouraging that there are others who have been feeling the same way.
    I’d love to share this blog on my FB page if that’s ok.
    Kindest regards
    Lisa

    • Jules Galloway
      Posted at 09:07h, 17 January Reply

      Thank you Lisa. Initially I was nervous about hitting “publish” on this post, because I was worried what people would think! But as my husband pointed out – it’s an inherited condition, it’s nothing that I could have prevented, no matter how perfect my diet and lifestyle were. And having been through the “crash and burn” stage, it gives me (and you!) a huge insight into how to help others with the condition. I’m glad you’re getting the answers you need. Yes, please feel free to share on FB (you can tag me at @JulesGallowayHealth if you like).

  • Georgia
    Posted at 12:51h, 17 January Reply

    Wow this info is awesome Jules! Thanks so much for sharing. I’ve a mind to get myself and my daughter tested. Never heard of this illness till I read your article. Looking forward to part two. Thanks again for sharing your story and I hope that your feeling so very much better. Xx

    • Jules Galloway
      Posted at 12:59h, 17 January Reply

      Thanks Georgia, let me know if you need a hand with testing xo

  • Julie Mansfield
    Posted at 05:55h, 18 January Reply

    I had my Pyrrole test done at Applied Analytical Laboratories at Kenmore for under a hundred dollars. I was told that you get more accurate results from them because of them testing on the premises, as it is such a sensitive test some people get false negatives. My result came back a staggering 418.

    I too had been suffering for many years with Hashimotos, the most debilitating symptom was the fatigue & loss of strength. The Pyrrole treatment has made such a huge difference to me I’m a different person again… I say again because past treatments have given me relief for a short time only for me to slip backwards again & again, I’m hoping this has been my missing diagnosis.

    I think I should also say that I have had Hair,Tissue & Mineral Analysis tests done in the past & zinc & copper levels had never been a concern, levels always sitting in the normal range, so it is a good idea to test specifically for Pyrroles.

  • Joan
    Posted at 22:42h, 19 January Reply

    You have summed it up nicely. Thankyou. I’ve been on this little roller coaster for two years. And there have certainly been many ups and downs, good and bad days, but I know I’m getting better. Slowly. Copper toxicity was off the chart, methylation shot (homo mthfr), zinc very low, pyrroles high, histamine, iodine very low so thyroid not working properly. The list keeps going. But I am progressing and have an amazing natropath, Liza Twohill. An absolute life saver. Thank you to Liza.

    • Jules Galloway
      Posted at 22:47h, 19 January Reply

      Liza sounds amazing. Can I please ask where she’s located? There may be others in your area looking for a good practitioner.

  • Despina
    Posted at 21:32h, 29 April Reply

    Lady, that’s my story.
    Thanks for sharing this so that it becomes more main stream. 🙂

    I feel like I’m going backwards at the moment and life slipping by.
    At last test I had a reading of 45; pretty high!

    I’m back on a zinc formula and managing my own diet and listening to my body instead of everybody else.

    Keep writing, keep sharing.
    Thank you!!

    • Jules Galloway
      Posted at 11:50h, 30 April Reply

      Heyyyyy… fellow 45 buddy!!! I love what you say about listening to your body instead of everybody else. Wise words indeed!

  • Kellie
    Posted at 16:13h, 30 April Reply

    Hi Jules, great article! I have always tried to do right and had been working with a naturopath in regards to healing adrenal fatigue for nearly a year before I tested for pyrroles. I also came back with a level of 45. I’ve since tested both kids who are also positive.
    My naturopath prescribed a compounded product and I’ve only been able to take it for a few days before headaches and dreadful symptoms came on. I thought it was copper dumping but she said she thinks it unlikely due to her having prescribed a very low dose? She’s thinking its perhaps Mercury detox but we’ve yet to test. So hoping I can get the good results I keep hearing about. Fatigue has really sidetracked my life for too long now.
    Also I asked my naturopath if I should test for mtfhr but she said she didn’t think was necessary as I don’t tent to eat folate enriched food items? I still feel like I’d like to know, do you think there is still value in it.
    Kind thanks xx

    • Jules Galloway
      Posted at 22:02h, 01 May Reply

      Hi Kellie, have you had your copper, zinc and histamine levels checked? This includes ceruloplasmin, which will help to determine the levels of “free” copper in your bloodstream. Even if you don’t eat folate enriched items, there are still benefits to knowing your MTHFR status, as it may change which supplements you should take.

  • Laura
    Posted at 08:56h, 23 May Reply

    So good to read this, Iv just been told I have Pyrrole Disorder 2days ago. Please bring me hope. I have suffered with Anxiety and Depression for over 11years and do not feel like myself at all. Iv been told to take vit b, zinc, biotin, magnesium, magnamse, vit c, vit e, p5p

    Laura

    • Jules Galloway
      Posted at 14:00h, 23 May Reply

      Hi Laura, Yes there’s hope 🙂 With the right practitioner the right balance of supplements, and a few diet and lifestyle tweaks, there are a lot of pyroluria sufferers out there are getting amazing results. I hope you’re feeling better soon!

  • Pingback:Healing Pyroluria… Part 2
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  • Ben
    Posted at 13:56h, 18 July Reply

    Thanks for your story. I had my first major crash 8 months ago, and since then I have been to a bunch of GPs an endocrinologist, and 4 naturopaths. After the GPs told me there is nothing wrong with me i decided it might be candida overgrowth, but I only got worse during treatment, so I moved on to adrenal fatigue. That helped a lot, but I still got periodic crashes, and increasing anxiety attacks, among other symptoms that lingered. Two weeks ago the latest naturopath I went to found elevated pyrole, and it explains a lot, including family history.

    It is interesting that many people who say they have adrenal fatigue go on to find this underlying cause. It makes a lot of sense that it puts load on your adrenals. I have only been on P5p B6 and zinc supplements for a week now, feeling a bit calmer, but energy is still a problem. I know everyone is different but I’m interested in others’ experiences with timeframes to return to normal energy levels. And thankyou for your comments about ups and downs, I don’t want to freak out on my first crash…..

    • Jules Galloway
      Posted at 14:23h, 18 July Reply

      Thanks for sharing your story, Ben. The road to recovery is definitely different for everyone. What I often see is that relief may come in 2 stages – the first stage is within a few days, when, like you, people report an improvement in some areas. Then they often plateau for a bit. The next stage where the energy starts to really come back can take several months or even longer to reach. I find it may be sped up by gut healing and adrenal work. Stick with it, there is a light at the end of the tunnel, and it sounds like you’re in good hands with your new naturopath!

      • Ben
        Posted at 10:59h, 21 July Reply

        Thanks for the response. I am in Brisbane, the naturopath who found my pyroluria was Kimballe at Beyond Good Health in Ashgrove, if that assists anyone who is trying to find help. They use a compound chemist next door to them that mixes up the supplements, it is expensive $350 for 100 days, but I think I was spending as much on herbal mixes for adrenal support.

        Ben

  • wendy
    Posted at 20:50h, 03 August Reply

    Thanks for the post, its great to read about other peoples experience with Pyroluria, would like to hear more updates. For me the supplements for Zinc was not such a smooth path as a lot of us that have this condition can’t absorb Zinc, I started with Zinc tablets followed by compound medication all made me very nauseous and Zinc levels at times decreased on this medication. Have finally started to get better results with Zinc cream. It appears the balance to get right is different for everyone.

  • Katrina
    Posted at 02:21h, 15 August Reply

    Hello I have just been diagnosed 2 days ago with a level of 88. My GP said it was the highest she had seen with her next highest being in the 60’s. I am awaiting the supplements she has ordered with full consideration of every single other element in this diagnosis. I feel well covered. I am hopeful that the compound supplement will just do its thing and I should feel good soon. Fingers crossed.

    • Jules Galloway
      Posted at 10:34h, 16 August Reply

      Yep, that’s certainly a high reading. Sadly, I’m seeing numbers like that more and more often (I’ve even seen a 120!). Good luck with your treatment and recovery 🙂

    • Ben
      Posted at 13:17h, 19 August Reply

      That does sound high, I had a reading of 31, but I guess it would have been higher a few months prior. I have been on the supplements for just over a month and feeling a lot better now. The Anxiety disappeared quite quickly, but my energy levels have only just begun to return this week. I can get through 3 days a week work now and do a bit of physical work around the house too. The biggest thing is how much more positive I feel about things. It has really changed my mindset.

      • Jules Galloway
        Posted at 08:54h, 20 August Reply

        Ben, that’s great news – I’m so glad you’re feeling better! 🙂

      • Nic
        Posted at 11:37h, 15 May Reply

        Ben I am curious to know what your doc put you on. Has it still been working strong for a year? I tested 22 high and overmeythlated.

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  • Kylie
    Posted at 11:35h, 09 February Reply

    Hi,

    Wow, I know how you feel and I am still on road to recovery. My pyrroles reading was 49.2 HPL and normalized reading (corrected for hydration) was 89.5. I am struggling so badly with muscle aches, joint pains and recurrent candida issues. I have bad brain fog. It’s very hard maintaining life. I am on the supplements but like you said, you go forward and back. It’s a costly thing to treat with all the additional vitamins etc to assist with the aches and pains.

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

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

  • Pingback:Pyrrole Disorder (Pyroluria) Testing - What You Need to Know - Jules Galloway - Naturopath
    Posted at 14:55h, 04 July Reply

    […] (which can be a shock when you view your test results!). I myself scored a reading of 45 (eek!) when I did my test in 2015. It’s not uncommon to see results 25 and upwards, and I’ve even seen one as high as […]

  • Adele
    Posted at 06:04h, 01 September Reply

    Hello Jules
    4am awake worrying about my children who have this horrible illness
    the youngest is 20 and tried to commit suicide on the weekend. We only found out this week that they have Pyrroles so the medication is new and the anxiety is high.
    Feeling very unheard as the doctors almost laughed at me when I said she has this illness – do they not read studies showing it is related to mental illness??? ahhhhh
    The information you have given is a great help and comfort that my “indigo” child is not weird afterall – she just has Pyrroles!!!!

    • Jules Galloway
      Posted at 09:14h, 01 September Reply

      Hi Adele,
      Thank you for sharing your story. The great thing about pyrrole supplements is that most of them can be taken alongside psychiatric medications (so you don’t have to choose one path or the other). I’m glad you are getting help, and I hope your daughter recovers soon. Sending you lots of love xoxo

  • Margaret Carey
    Posted at 14:41h, 10 January Reply

    Thanks so much for being so open and honest in your journey Jukles. My grandchildren were diagnosed with this and showed levels of high hundreds and 200. When I was told it is inherited I looked it up and couldn’t believe how many symptoms I identified with.
    I told my Naturopath about my grandchildren so she sent me for the test….I have a level of 33 and am on BiCoZn. I feel so encouraged by reading your blog. I now know it can be normal to be up and down with this until things are sorted. My Naturopath has suggested we get Copper tested and also unermethylation etc. IAfter reading your experience I will call her tomorrow toarrange to have these tests done. I had wondered why these symptoms hit me so hard recently….like being thrown off a cliff….surviving but can’t get the energy back. I had started the meds but now I know that I was under severe stress due to an overbusy life and unresolved grief issues as well as new grief….Your article has brought that lightbulb moment and now I know I WILL recover instead of hoping I will. Thank you and bless you for your honesty. I am sure many many people will be informed and encouraged by this…..don’t stop writting and sharing your story..
    I have shared this article on my facebook page so my friends and family understand this diagnosis better.

    • Jules Galloway
      Posted at 21:51h, 10 January Reply

      Oh wow, thank you so much for the kind words, Margaret. It really means a lot to me. All the best for your recovery xo

  • Fleur
    Posted at 19:58h, 31 January Reply

    Hi, I am in NZ and i have just tested positive for pyroluria through a lab test. I have had ongoing digestive, skin and fatigue (and some anxiety) issues for most of my life. I would like a little help interpreting the numbers on my test if that is OK? My result said 11.25 Mauve Factor HPL (Normalised) and was considered by the lab to be in the high range. All the reading I have done online seems to be using a different measuring scale. I am seeing a local naturopath who is very supportive, but I would love some help learning to read these numbers…I’m the kind of person who likes to understand my results:) Is this considered a serious or borderline case?

    • Jules Galloway
      Posted at 10:43h, 02 February Reply

      Hi Fleur,

      I would usually consider 11.25 to be borderline. However… I never use the number to determine what supplements and herbs I give a patient. I always look at other markers, like zinc levels, copper levels, ceruloplasmin, the state of the gut, etc, and ask the patient about their symptoms. The number on your kryptopyrrole test should not be the only marker you use to determine your state of health, nor should you let it determine what action your should take. In terms of knowing whether it’s a “serious” case or not, I would rather look at copper and ceruloplasmin (copper carrying protein) levels to assess that, as copper toxicity is the main thing that makes you unwell.

  • Kylie
    Posted at 22:44h, 06 March Reply

    I just received my test results back today and I’m just over 40 and yours was the first site I came to after googling to find out more! I have already taken my first dose prescribed so fingers crossed for an ease of symptoms 😊

    • Jules Galloway
      Posted at 16:12h, 07 March Reply

      Yay, Kylie! I hope you’re feeling better soon 🙂

  • Karen
    Posted at 07:46h, 09 May Reply

    Thanks Jules for sharing your story. I, myself, have been diagnosed with Pyrrole disorder – my results were the highest my naturopath had seen coming in at 195! yes, not a typo! I often wondered why i felt like i wanted my life to end, and know i now why. it wasn’t me talking, it was my body screaming for help! i find that my progress is very much like you said, 1 step forward, 2 steps back. it beens numerous months and i have to just accept that this will be a slow and steady recovery. my naturopath has me on the best supplements and is very supportive, but i know it is up to me to be more disciplined with taking them everyday, managing my stressors and being motivated to research more meals ideas that are nourishing. i find that i get overwhelmed so easily and my diet suffers, therefore my healing is affected. I find it embarrassing to say, but at times I feel like i can’t be healed and give up when i’m grappled by the darkest times. then other days I’m eating well, exercising, feeling on top of the world. it just never lasts and i wonder if I’m sabotaging myself, or if this feeling is a result of the copper loading. I’m going to continue to educate myself more and keep my spirits positive. in your opinion, (i am vegetarian ) does a vegetarian diet exacerbate this condition? i have read some information that suggests this but id prefer to stay vegetarian. thanks again for your sharing, i really connected with it xxx

    • Jules Galloway
      Posted at 11:53h, 09 May Reply

      Hi Karen,
      Vegetarian diets are usually higher in copper, so it does present an added challenge. However, I’ve helped plenty of vegetarian patients to get their copper down without them having to eat meat.

  • Ed
    Posted at 06:31h, 27 June Reply

    Hi Jules.

    I think I may have this disorder. Have you tried fasting? It seems to cure a lot of things. I wonder if it would help?
    I know that it can help the body be better at blood sugar control.

    Ed.

    • Jules Galloway
      Posted at 23:57h, 17 July Reply

      Hi Ed, some people do well on fasting, but it can vary from person to person. For some of my clients on very high zinc supplements, juice fasting isn’t an option (because zinc needs to be taken on a full stomach). But some of my clients do really well using intermittent fasting, as long as their adrenals can handle it.

  • Sarah George
    Posted at 22:28h, 17 July Reply

    Amazing to find this. My sis & I have this too.
    Have been on supps for 4 days, felling normal again for the first time in for as long as I remember.
    Lots of love. Sarah

    • Jules Galloway
      Posted at 23:55h, 17 July Reply

      Wow, what a turnaround! So glad to hear you’re feeling better xo

  • Jennifer Raath
    Posted at 18:07h, 03 December Reply

    Dear Jules ,Im a south African ,my wonderful cute daughter Nicole is a australian After i was desperate suffering from bloodpressure spikes vey high accompanied with panic and anxiety attacks ,she introduced me to your blog Oh how relieve I feel ,as my doctor here just prescibes synthetic anxiety medication and higher doses of hypertension medicine I see all the symptoms you describe is exactly what I have As my daughter has been diagnosed with MTHFR Pyrolles ,Im sure i have this disorder and will be ever thankful for help
    Regards and God bless Jennifer Raath ,,South Afica

    • Jules Galloway
      Posted at 11:47h, 21 December Reply

      Hi Jennifer, I’m so glad that my blog has helped you! I wish you all the best for your recovery 🙂

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