by Joanie Blaxter, founder of Follow Your Gut
Understanding Anxiety and Depression: Pyroluria, The Hidden Cause Your Doctor Doesn't Know About (Part 1)
To me one of the most fascinating aspects of nutritional science these days is the study of genetics versus epigenetics, and how they differ.
Genetics is how the computer is hardwired. It's what we buy at birth, it's the model we work with for the rest of our lives.
Epigenetics is the software we load and reload into our computer over time. It represents how the environment affects the expression of our genes. And, of course, the most powerful environmental factor we have under our control to impact the expression of our genes is our daily nutrition.
Having a certain set of genes does NOT determine what our life will be like.
Whether genes are turned on or off by what they're exposed to is what will shape the unfolding of our life. In other words, having the right software can dramatically affect any deficits we may have inherited with our model.
It may be entirely possible to improve the genetic material we pass to our children, that with the right nutrition the health of our descendants can become genetically sturdier and sturdier with each generation. It also means that inherited genetic defects can be compensated for with targeted nutritional support.
I can speak to that possibility from personal experience.
I have felt a huge change in my emotional state that is apparently due to not just one, but two different inherited genetic defects. How did I correct my symptoms? I simply got an ACCURATE DIAGNOSIS from an EDUCATED PRACTITIONER and then started taking a few inexpensive nutritional supplements.
(Quick note from Kelly, if you want more information on how to find an accurate diagnosis for why you feel depressed and/or anxious, be sure to CLICK HERE for information on anxiety and depression.)
Today's post is going to focus on the first correct diagnosis I received and part-2 will cover my second discovery. (Update — Read part-2 here: Hidden Causes of Anxiety and Depression — 5 More Hidden Causes Your Doctor Doesn't Know About.)
Don't think this topic may apply to you or anyone you know?
Hint: statistically, the subject matter in part-2 has application to 44% of all North American Caucasians! And today's? Read on and find out…
PYROLURIA Related Depression & Anxiety
I can always tell a fellow pyroluric.
Whenever I ask the question “Do you have any family history of depression, alcoholism, drug addiction or cancer?”, they're the ones who answer, “Well, who doesn't??”
Um, pyro… Are we talking about setting fires here?
No, although we are talking about one out of every ten people.
11% of the general population suffers from this genetic condition.
And the percentages (statistics vary depending on the source) shoot up when you begin testing specific categories of diseases and clinical psychological conditions.
Number of Pyrolurics in Specific Conditions & Diseases
- 40-80% of Alcoholics
- 70% of Depressives
- 50% of Autistics
- 50% of those with ADD/ADHD
- 50% of those with Bipolar Disorder
- 33% of those with Cancer
- And more… The stats in many other modern diseases are startlingly high.
If you have pyroluria, chances are more than 99% you don't know it. It is a rare health professional who is educated enough to make this diagnosis. This is bizarre to me when you consider that estimates are about 3.5 million Americans suffer from this genetic defect and it's relatively easy and inexpensive to test for and treat.
Genetic Condition Causing Chronic Nutrient Deficiencies
Pyroluria is a genetic condition associated with hemoglobin production in which the body has too many kryptopyrroles in the blood due to the an inability to properly excrete these substances. It can vary from mild, moderate to severe, but symptoms always involve depression and anxiety in some form.
This is because kryptopyrroles are “nerve poisons.” They irritate and inflame the nervous system, leading to anxiety and insomnia. They also bind up with important nutrients, most particularly B6 and zinc. Since B6 is necessary for the final stage of serotonin production, a deficiency of it leads to depression and fatigue.
This is why such a high percentage of drug and alcohol addicts test out positive for pyroluria. Individuals self-medicate to temporarily relieve the mood and sleep disorders resulting from the chronic deficiencies of B6, zinc, etc. Furthermore, both Vitamin B6 and zinc are essential for producing the enzymes required for hundreds of other functions.
Chronic deficiencies of these two nutrients leads to damage to:
- Immune system
- Connective tissue
Pyroluria may be largely undiagnosed, but it severely cripples individuals' psychological and physical lives with a broad range of damage to organs and systems. The longer it takes to begin treatment, the longer it takes to see substantial improvement.
Since it takes time for the kryptopyrroles to build up in the body, the onset of problematic symptoms generally shows up in the late teens or early twenties, nearly always triggered by a stressful event (going away to college, parental divorce, pressure at school, etc.).
In fact, the most consistent aspect of this condition is that stress will invariably cause symptoms to worsen because under stress we use nutrients up to twice as fast. (Remember this the next time you get stressed out! Difficult times are when we need to be extra vigilant to eat well and take necessary supplements, not the opposite.)
Since excess kryptopyrroles bind up important nutrients, the immediate treatment is to add the missing nutrients back into the diet at extremely high levels. The goal is to supplement with a high enough dose that all the free-floating kryptopyrroles in the blood get bound up, with enough B6 and zinc left-over to address the body's nutritional deficiencies.
Because the body is constantly producing more kryptopyrroles, pyrolurics must supplement on a daily basis for the rest of their lives.
For this reason, pyroluria can never be reversed with food alone, no matter how nutrient-dense. A therapeutic approach must always include both a clean, wholesome, Low-Carb/Traditional Foods/Autoimmune dietary foundation, in combination with nutritional supplements.
Nutritional Supplement Protocol for Pyroluria
- B6 (also known as P5P in the stronger, coenzymated form) and
- Zinc (preferably the most absorbable form which is picolinate), and
- To a lesser degree, the B vitamins biotin and niacin, the minerals magnesium and manganese, and GLA (black currant seed oil).
(Source: Do You Have Pyroluria?)
Why Have I Never Heard of Pyroluria if it's so Common?
The condition was discovered in the late 1950's by well-respected and published physicians. Nevertheless, few medical professionals know about this condition because it's rarely taught in med schools and never mentioned by the pharmaceutical industry.
This is because pyroluria is a complicated condition in which nutritional status, diet, digestion and stress levels must all be addressed and is not, therefore, a candidate for the “one pill wonder” approach.
Pharmaceutical companies generally do not invest money or research in conditions not solved by a chemical intervention.
Pharmaceutical money is what underwrites not only most research in this country, but also what is taught in our allopathic institutions (conventional medical schools). Consequently, pyroluria remains fundamentally untaught, unknown and untreated by conventional medical doctors.
3 Red Flags for Pyroluria
- Any family background of alcohol or drug addiction, depression, suicide, mental illness or cancer.
- If you have taken Zoloft or Prozac with little or no resolution of your diagnosis; these medications will never sufficiently relieve pyroluria-associated depression.
- If taking zinc (say, an immune tab for sore throat) produces an unusually strong reaction of nausea; a B6 deficiency makes one easily nauseated by zinc. When supplementing, pyrolurics must start with P5P (coenzymated B6) only at first. When symptoms indicate that their B6 levels have risen (usually only a day or two), add in the zinc supplement, but always on a full stomach.
Concerned you or someone you love might have inherited this social anxiety condition?
I would say the first step is to take an online pyroluria symptoms test. Keep in mind you are simply looking for a high score, not a “perfect” score. For example, all the questionnaires I've seen say that pyrolurics have “little or no dream recall” and “difficulty tanning.” Nevertheless, that is not true for me and, yet, I definitely have pyroluria. My two favorites questionnaires are from:
How To Get Tested and Treated
If your questionnaire score is high enough that you have concerns, the next step to know definitively is to take the urine test. Relatively inexpensive and available without having to go through a doctor, the test involves simply sending a urine sample to a lab.
The correct therapeutic dosage of B6, zinc, etc. will be determined by the amount of kryptopyrroles in your urine.
How to Find an Educated Practitioner
Once my practitioner correctly diagnosed me in 2010 as pyroluric, my life changed, virtually overnight – although, unfortunately, it didn’t stay that way. While I literally received noticeable relief from both chronic fatigue and nightmares with my very first dose of B6, it has been a complicated, two steps forward, one step back, but generally upward spiraling journey. My recommendation?
Make sure you have a clinically experienced professional helping you.
Because pyroluria requires a therapeutic approach that is biochemical, dietary and psychological, it takes time to repair what is, for many patients, decades of damage done to their organs and systems. Those “steps back” can be very confusing without holding the hand of someone who has seen the pattern before in a clinical setting.
Having said that, I personally have never taken the urine test to confirm the presence of kryptopyrrholes. Instead, simply based on my symptoms, my practitioner recommended one dose of 50 mg of P5P (the stronger, coenzymated form of B6) before bed.
That night I slept without nightmares and had far more energy upon waking for the first time in many months. My practitioner then fine-tuned her diagnosis through trial and error, until we found that what works best for my symptoms is 50 mg of P5P three times daily, in conjunction with 75 mg of zinc taken twice a day. Based on that, my practitioner described me as having a “moderate” case of pyroluria.
Kelly again here.
Doesn't this drive you crazy that there are answers out there and remedies like the one Joanie talks about here, which have NOTHING to do with needing another drug, yet that's ALL most docs know to do if you visit them with complaints of anxiety and depression! Now you know about one possible hidden cause (and in part-2 you'll learn about yet another possibility), but the main take-away from this is that we need proper information and testing to see WHAT we're dealing with.
Where to Find More Information on Pyroluria
Practitioners & Online Resources
- Theresa Vernon, LAc, my own practitioner and nutritionist, is pyroluric herself and has a great description on her website under the page on Copper Toxicity.
- Nora Gedgaudas has an excellent article on pyroluria on her website, including great references.
- Pyroluria: A Hidden Disorder from Natural Insight
- Pyroluria: Hidden Cause of Schizophrenia, Bipolar, Depression, and Anxiety Symptoms
- Pyroluria: The Most Common, Unknown Disorder
Books with Information on Pyroluria
- Primal Body, Primal Mind by Nora Gedgaudas
Watch this video on Pyroluria:
More information not to miss (or to pass along to your friend or loved one who is suffering or also trying to understand anxiety and depression):
- How to Fight Depression and Anxiety Naturally: 20 Helpful Tips for Anxiety, Depression, and Fatigue
- What Killed this Med Student? Dishonest Psychiatrists and Chemical Straightjackets
- How to Help Teens with Anxiety or Depression
- My All Natural Chill Pill for Anxiety
- Coming Off Antidepressants (Weaning From Paxil: A Reader Shares Her Story)
This was a guest post by my sweet friend, Joanie Blaxter, who is now a regular writer around here! She’s been the Ventura County, California chapter leader of the Weston A. Price Foundation since 2010, and you can contact Joanie here for health consultations. Also, find all her past posts here.
Disclaimer: neither Joanie nor I are health professionals! Use what you read here as part of your own research and then consult with a natural-minded doctor or health professional you trust to find what is best and right for YOU. Read my entire disclaimer here, and also note that there may be affiliate links in this post.