(My own words)
This was a tricky one. I came across pyroluria from time to time in my research into my poor health. I always ticked a lot of boxes on checklists. But how can you know for sure, right? Sometime in the summer of 2014 I started to feel really poorly. I thought it was vitamin D deficiency, so I concentrated on that and it helped a bit. In the start of 2015 I again came across pyroluria and decided to investigate that further. But when you know very little about it, sites are hard to read. They’re usually not very specific about how to go about it (in fear of giving wrong recommendations?). I also noticed some controversy: some recommended high zinc and B6, some didn’t.
One that doesn’t recommend high zinc and B6 for pyroluria is Dr Wilson. He says that you have to find the cause of the pyroluria and treat that. Makes sense. He found in his practice that pyroluria was caused by copper overload. Now, zinc and B6 both are copper antagonists so that also makes sense.
I did come across Dr Wilson’s site early on in my investigation, but I couldn’t understand it then. So I went with sites I did understand and started high zinc (100 – 150 mg) and B6 (100 mg p5p and 200 mg B6). The first week I did this I felt great, I mean: amazing! I was sure I was on to something here. But soon that wonderful feeling turned into a wired feeling. Rapid heart beat, high blood pressure (190/96 first thing in the morning), heart palpitations, anxiety, paranoid thoughts, short temper, fatigued though wired, insomnia, ….) At first I thought it was the zinc helping my thyroid and making my Thiroyd obsolete so I stopped taking that. But even after a week or so the symptoms didn’t subside. If anything, they got worse.
So back to the drawing board…. I remembered what Dr Wilson had said on his site and tried to really understand this time. By that time I had also been experimenting to find out what made the wiredness worse and what relieved it. Basically anything that revs up my metabolism makes it worse for instance eating high carb. Also any copper antagonist makes it worse: vitamin C, B6, zinc. Even my beloved liver support and digestive enzymes made it worse. Things that made it better were NAC, TMG, glutathione (mornings on empty stomach), molybdenum, magnesium taurate, MSM. Especially my reaction to zinc surprised me: it is in itself a calming mineral.
My copper toxicity makes taking zinc and B6 a hazardous thing. I am deficient in both but as soon as I try to take them in higher amounts they cause a copper dump. And I can take a lot but living with the symptoms of a copper dump is just asking too much.
So I’m going to concentrate on these things:
- Lowering the copper that’s stored in my cells – very slowly
- Adding nutrients that are depleted because of the high copper
See Copper for my nutritional and supplemental approach.
Things I found out
- pyrodixine HCL (PN) is a form of B6 most common in supplements
- its active form p5p (Pyridoxal 5′-phosphate or PLP, also p-5-p)
- http://www.hputest.nl/ewhat.htm Zinc is required for the conversion of PN to its active form p5p .
I was very zinc deficient. At some point in the beginning I took my p5p (100 mg) and PN (200 mg) in the morning and my zinc in the evening because some people wrote that zinc calmed them down. But the zinc kept me up at night. So I started taking it at 15:00, but even then I couldn’t sleep from being so wired and angry. This was most probably caused by the zinc converting the 200 mg of PN into p5p, releasing a lot of B6 into my system which dislodged a lot of copper.
So I stopped taking the PN and now take (june 14th 2015) only the p5p form (100 mg). I take zinc with breakfast (100 mg picolinate), then p5p at 10:00 and 12:00, then zinc again at supper (100 mg glycinate). I’m not going to do these high zinc dosages for a long time, but I’m just so depleted. My wired feeling and the resentment hasn’t disappeared altogether, but that’s impossible anyway. But it’s so much better that I can tolerate it.
- The problem with copper toxicity is that you become low in zinc and B6 because of it, but taking either releases copper from your tissues into your bloodstream making you feel wired and resentful.
That is why dr Wilson says not to take supplements, but to make dietary changes that provide you with all necessary nutrients to reverse copper toxicity.
When I don’t take zinc and B6 though I feel horribly tired and depressed and …. well just horrible. So I do take supplements.
- http://www.hputest.nl/ewhat.htm Pyridoxal-5-phosphate plays an important role in the formation of niacinamide (sometimes called vitamin B3) from tryptophan, and also picolinic acid from tryptophan. Zinc is required for the conversion of pyridoxine to pyridoxal-5-phosphate. Picolinic acid plays a role in the uptake of minerals like zinc, chromium, manganese and magnesium. Here an important downward spiral starts.
This means that if you have B6 deficiency, you are going to be low in niacinamide, picolinic acid and other metabolites of tryptophan. Being low in niacinamide gives you depression among other things. Being low in picolinic acid makes you absorb minerals like zinc, chromium, manganese and magnesium poorly. So you’ll be left with a deficiency in them too.
Taking your minerals in the picolinate form can overcome this hurdle until your B6 levels are back up.
- http://www.hputest.nl/ewhat.htm Tension, anxiety and depression in adult HPU patients are caused by the secondary deficiency of vitamin B3 (niacinamide).
So you’d be wise to add niacinamide to your program.
- http://www.hputest.nl/ewhat.htm Low levels of vitamin B3 are closely linked with high cholesterol and low levels of high density lipoprotein (HDL) cholesterol. Cardiovascular disease is commonly in family’s with HPU.
- I found this regimen very helpful, although I do it slightly different (mine is at the bottom).
- http://www.westonaprice.org/health-topics/precious-yet-perilous/ Concerning PUFA’s (poly unsatureated fats), more specifically Arachidonic acid (an omega-6 fat).
Ray Peats says that you really don’t need to take PUFA’s because they only cause inflammation if you take too much. Since the body only requires tiny amounts, you can easily take too much which can result in things like rheumatism and high blood pressure and so on. He writes that research shows that any PUFA deficiency is really a B6 deficiency. Well, there you have the problem: when you’re copper toxic, you’re going to be extremely low in B6!
So us B6 deprived people are going to be PUFA deficient, assuming we don’t eat much of them. Since taking evening primrose oil my skin is far less dry, I was definitely deficient in Arachidonic acid. But I have to remember that when I fix my B6 deficiency, I should stop the evening primrose oil, because it is going to become a hazard to my heath in stead of a blessing!
- http://www.publichealthalert.org/kpuhpu-a-major-piece-of-the-puzzle-in-overcoming-chronic-lyme-disease.html High dose Vitamin C has the effect of changing copper to a form that can be reused by the body
Now that is interesting! Pity they don’t write what exactly is a “high dose”.
When your body starts dumping copper from your tissues because the detox pathways are open again, that copper is going to go into your bloodstream. Apparently, all you need is some vitamin C to make that copper bio available again so your body can use it.
This solves a problem that copper toxic people have: there is too much copper in the body but at the same time it’s not bio available. You have all the agony but none of the benefits of the copper. Some people therefore recommend actually taking some copper (either in food or as a supplement) to offset that copper deficiency. But why not use the copper that’s coming out of your tissues instead by adding vitamin C?
- The story related here could be my own: http://www.westonaprice.org/modern-diseases/copper-zinc-imbalance-unrecognized-consequence-of-plant-based-diets-and-a-contributor-to-chronic-fatigue/