24 May Healing Pyroluria… Part 2
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:
- Ceruloplasmin (the major copper-carrying protein in the blood)
- 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 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.
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…
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!