If you’re new to pyroluria, it is a social anxiety condition, where physical and emotional symptoms are caused by deficiencies of vitamin B6 and zinc. As well as feeling anxious, shy, or fearful or experiencing inner tension since childhood (and often hiding these feelings from others), digestive symptoms are common and we cover these in my interview Low zinc, social anxiety/pyroluria and the gut on the virtual conference called Better Belly Project 2.0, hosted by Summer Bock, one of the leading gut health experts.
What you’ll learn:
- How to figure out if you have the social anxiety called pyroluria and what key nutrients are missing in these cases
- The zinc connection to the microbiome, digestion and social anxiety
- Digestion symptoms we see in pyroluria
- Is introversion a personality trait or a biochemical imbalance?
- Can collagen and gelatin make you more depressed and anxious?
I talk about how you can feel when you have pyroluria and how I can relate to all this:
You may feel uncomfortable in group sittings, you may feel uncomfortable with interacting with large crowds of people. A lot of people will say, “I’m really good at speaking on stage, but don’t make me mingle with the people after I presented on stage because then I’ve got to interact with a lot of people.” You’ve got this inner tension where you deal with it, and you cover it up, and you push through.
I can totally relate because I have pyroluria myself. This is why I’m so passionate about sharing this topic because I grew up pushing through and dealing with it. I remember the first day of school, wanting to walk to school on my own. I didn’t want my mom to take me into school. I was always this person who kind of pushed through and forced myself to do things.
We get through life like that, but it can get pretty exhausting. With my whole anxiety that started in my late 30s, which was a result of this perfect storm, it was gluten sensitivity, and adrenal issues, and low serotonin, and low GABA. And part of my perfect storm was this pyroluria that I discovered. I find that a lot of my clients will push through, and they’ll deal with this, for many, many years.
But, as things start to shift, as they’re starting to go into perimenopause, and the hormones are getting disrupted, and they’re becoming more stressed, and they’ve got adrenal issues going on, and they discover they’ve got food sensitivities. This all conspires together to make their symptoms much worse. Then, they find they can’t socialize, or when they are socializing, they just feel so anxious, it’s just debilitating, and they can’t actually function.
There are overlaps with the pyroluria questionnaire and an introverts questionnaire I came across on the Huffington post. Based on feedback from 100s in my community I’m proposing that introversion is not a personality trait, or maybe it’s not all personality, but there’s this biochemical component.
We also have a great discussion about collagen and gelatin, which can help to heal the gut, but may also be depleting serotonin levels and increasing anxiety/depression in some susceptible individuals:
I actually did a mini-survey with the people in my Facebook community, and I said, “Anyone using collagen or gelatin, have you noticed an increase in anxiety, an increase in depression, agitation, heart palpitations, insomnia?” I got very varied response. Half of the people said yes, they felt worse, more anxious, more depressed. Another 40% said no, they feel great. Then, interestingly enough, there was a few people that said they use collagen and gelatin to actually lower their serotonin levels.
If you aren’t yet signed up you can see the event schedule and register here for Better Belly Project 2.0. It runs through December 14th and Summer is interviewing 49 experts who are leaders in the field of digestive health.
Here are some topics you may also enjoy:
- What To Do If Your Gut Isn’t Getting Better: Jennifer Fugo (also today)
- Leaky Gut and Your Child: Dr. Elisa Song (also today)
- 17 Right and Wrong Ways to Eat Ferments: Summer Bock (also today)
- Treatment Options for Chronic Yeast Issues. What is the evidence?: Dr. Jessica Drummond (coming up tomorrow)
- Metals That Impact Gut Function: Wendy Myers (coming up in a few days)
I hope you enjoy my interview and these other expert interviews!
Do you have pyroluria and can you relate to any of this? Feel free to leave your comments and questions and comments below.
I wonder if the health or diversity of gut bacteria plays a role in the different reactions people have that are taking collagen or gelatin for gut health.
Heidi
Excellent point and since both serotonin and GABA are made in the gut I’m sure this can be one of the many factors that can play a role in the reaction. Here is my original post on the topic https://www.everywomanover29.com/blog/collagen-gelatin-lower-serotonin-increase-anxiety-depression/ Feel free to add a comment to this blog (especially if you have a personal experience with this) and I’ll be sure to address it in the follow-up blog I’m planning.
Hi Trudy
Im just starting the supplements for pyroluria..I have over 20 symptoms on the questionnaire..I sent you a message regarding how much to take of the B6, P5P and EPO..How much zinc also? and how do you like Ortho Molecular reacted zinc?
If my multi has 1mg of copper is that too much? How high on the supplements should I go to start? and then what would be the maintenance dose.
thank you.
The story above sounds exactly like me. I was an introvert as a child and all through school. I wanted so badly to be like everyone else, but I could tell that I was different. Even dating was very hard for me. As I got older, things only got worse. At 38 all hell broke loose. Constant anxiety and depression along with agoraphobia and panic attacks, not to mention constant trips to the emergency room, always thinking I was about to die. That was 25 years ago. Now I ‘m in my 60’s and have become totally house bound. Needless to say I have had no life for 25 years. I was finally diagnosed with pyroluria and followed the protocol with b6 and zinc for about 6 months and it made no difference at all. I started taking GABA and didn’t notice any difference. I’m still on Klonopin 3times a day but it is no longer working. I also am constantly dizzy all the time and can’t function much at all anymore. I stay on my couch all day and then go to bed at10:00. Everyone has given up on me, including my husband and son, so I am alone all the time. My doctor wants to put me in a hospital, but I told him that it was pointless because they would just give me anti depressants and I can’t take them, I have tried 24 of them and ended up worse instead of better. Well, that’s my story, sad and pathetic, any suggestions are welcome. Thank you, Mickey
Hi Mickey,
I have a similar story as yours, and am also in my sixties. A long time to go what we’ve been through. We’re survivors, for sure. I wanted to suggest a best-seller of a book, that’s been very helpful to me. It’s called The Tapping Solution. Simple and amazingly effective. It uses various acupressure points. The author, Nick Ortner, has emails where he demonstrates the techniques on videos, which I believe you could access if you type his name on the Internet. It’s very helpful to see the videos, as he shows exactly how it’s done. It’s worked for me and many others, and there’s no expense, because you’re just tapping on different points; but there is an order and technique to it. The technique is called EFT, which you could also look up for how-to videos. It really works!! I know it couldn’t hurt to try, and it sounds like you’re truly imprisoned in daily suffering. You certainly deserve better, and I’m excited to tell you about this effective practice. Please consider giving this method a try.
All the best,
Yvonne
Yvonne
Thanks for supporting Mickey 🙂 EFT can be very helpful for many and I’m glad it’s helping you. Interestingly it doesn’t work for everyone – I am one of those who it doesn’t work for.
Mickey
I would continue to search for nutritional answers. I do much trouble-shooting when it seems like someone should respond to nutrients and they don’t. I cover some of this here https://www.everywomanover29.com/blog/anxiety-summit-pyroluria-amino-acids-acids-troubleshooting/ and here https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/. We also make sure to address ALL possible root causes https://www.everywomanover29.com/blog/60-nutritional-biochemical-causes-of-anxiety/
One area that jumps out from your journey is the Klonopin and this would be an area I’d address as benzos can cause tolerance, anxiety, depression, dizziness and many don’t respond to supps when on a benzo or even when tapering.
Hi Trudy, I tested positive for Pyroluria thru the urine pyrolles test. I also had my zinc plasma tested and zinc levels were normal at 120 ug/dL. What is your take with results like that…isn’t Pyroluria an indicator of since deficiency?
Zinc deficiency*
Alex
I use the questionnaire and response to supplement – plasma zinc is not terribly accurate
Good day
At the beginning of this year, I was diagnosed with GAD again and had the most terrible violent thoughts towards myself and loved ones. There is definitely a link here to my missing period that has been gone for a year and a half now. Over this year I have done a lot of work to get to the bottom of the problem but was wondering what you would have recommended for this type of anxiety, supplements, foods to avoid?
Looking for any insight would be greatly appreciated as I am trying to understand how one can have such terrible thoughts. It has really created a disability for me to live life to the fullest.
Look forward to hearing from you.
Kind regards,
AH
I always start at the beginning with looking at diet (no gluten, no sugar, no caffeine, eating quality protein for blood sugar control), gut health and doing trials of the amino acids based on symptoms (https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/), zinc/B6 and EPO if pyroluria is an issue, and adrenal support.
Addressing the basics can often help with hormone balance but with no period for 18 months working with a functional medicine practitioner to address this would be key.
Here is a checklist of many possible root causes https://www.everywomanover29.com/blog/60-nutritional-biochemical-causes-of-anxiety/
We always want to look at medication side-effects – SSRIs are known for doubling the risk of suicide and violence in adults http://www.bmj.com/content/355/bmj.i5504)
Lastly make sure you have a good support system in place.
Hi Trudy,
I met you on the SIBO SOS Summit. You committed on my post about my son regarding SIBO and Anxiety. My son and I just went through your questionnaire and answered yes to all by about 4 of the questions. Can you recommend a lab in the US where I can order a test kit? Thanks so much for all the information. He had previously met the criteria for Mitochondrial Dysautonomia which was thought to drive his Cyclic Vomiting Syndrome, but this may actually be the issue. So glad you you introduced yourself to the SIBO Facebook group!
Nikki
Glad to see you here and hope this information helps your son. I don’t have any experience with Cyclic Vomiting Syndrome except a few people finding a possible connection to pyroluria. I have seen a number of pyroluria clients that had have extreme nausea and some vomiting, and they find this goes away when on the pyroluria protocol.
This lab does the urine test https://www.dhalab.com/shop/kryptopyrrole-quantitative/ but just be aware that false negatives do occur and I use the questionnaire and response to the supplements.
Other areas to look into: vagus nerve support (https://www.everywomanover29.com/blog/vagus-nerve-rehab-gaba/) and Ehlers Danlos syndrome (https://www.everywomanover29.com/blog/joint-hypermobility-ehlers-danlos-syndrome-pyroluria/) as there are dysautonomia connections here too with possible tie-backs to pyroluria.
Please do come back with an update
Nikki
I just came across this article where co-enzyme Q10 and L-carnitine has been shown to help many with CVS https://www.hormonesmatter.com/cyclic-vomiting-syndrome-mitochondrial-dysfunction/
Phillipa mentions this in the comments:
“The doses described in the paper are:
Co-enzyme Q10: Participants were treated with co-enzyme Q10 (ubiquinone) in liquid or gel capsule form (from a variety of brands) at a starting dose of 10 mg/kg/day, or 200 mg, divided twice a day, whichever is smaller.
• L-carnitine: Participants were treated with Carnitor brand or generics at a starting dose of 100 mg/kg/day divided BID, or 2 grams twice a day, whichever is smaller.”
The article/study mentions cyproheptadine/Periactin which is an antihistamine, as well as Amitriptyline/Elavil which is similar to an SRNI. Because of the side-effects of these medications I’d err on the side of caution and look at a dietary approach to lower histamine (if needed) and figure out if low serotonin and/or low catecholamines are an issue and address with tryptophan and/or tyrosine if they are. I use the questionnaire and trial method https://www.everywomanover29.com/blog/how-to-do-an-amino-acid-trial-for-anxiety/
Keep in mind that the nutrients in the pyroluria protocol do help to make the neurotransmitters so they may be enough i.e. the amino acids may not be needed too.
Trudy,
Thanks so much for the additional information! I will definitely look into all of these. At one time, we did have a genetic physician disagree with the mito diagnosis. However, we were not in the position to follow through with the testing. We may now go ahead and do more testing since I can see some very commonalities in the some of the links you provided with my son’s condition. I’ll definitely keep watching your blog for more information!
Merry Christmas!
Nikki
I am taking collagen mainly for my joints but, thanks to your comments, realized I have to take it early in the day or it seems to make it hard to sleep at night. Whereas another writer wrote about how good the glycine in collagen makes him feel. So people differ in their reaction.
Also, I have pyroluria. When I was 16 I noticed silver streaks on my buttocks. I asked my mother if they were hemorrhoids. She said no, they were stretch marks, even though I had never had a noticeable change in weight.
Thanks for all you do!
Mary
Thanks for sharing – and yes we’re all unique. Also pyrolurics tends towards low serotonin so that may be a factor too.
I have low serotonin and just started the supplements for pyroluria..asking the dose of them also..with the EPO..
Can you become anemic from too much zinc?
And, what is a safe maintenance level.
Also copper, is 1mg too much in a multi..thank you so much for your help…Im hoping this helps with my anxiety…the GABA and tryptophan were making more insomnia..can’t take 5htp either. I do try supplements for high cortisol for my adrenals, another issue..thank you Trudy.
Trudy,
I just wanted to let you know we got the test results back for my son. His results came back at 56.92 elevated for Pyroluria! I’m amazed, shocked and excited all at once. We live in Illinois, USA, so I will be contacting Dr. Mensha and Dr. Bowman at Mensha Medical in northern Illinois. Thank you so much for pointing us in the right direction!! I am grateful and thankful I just happened to see you post on the SIBO website in December. God was working for us on this day! God Bless!!
Trudy,
My son (12 years) and I have almost all of the symptoms of pyroluria. I have already started supplementing with zink and B6, without testing for kryptopyrrole. I noticed a change in his mood after two days!
We live in Sweden and there are no doctors treating or testning for pyroluria here. We’re on our own. Do you have any advise for us?
Jenny
I am middle-aged and have been searching for help for years. If you live in a small town like me, good doctors can be hard to come bye. I could get all the birth control pills and anti-depressants I wanted (no, thanks), but no real help.
I started Inositol about a month ago, and ended up here looking for more info on that. I then stumbled upon the page about Pyroluria. I am so grateful.
Since I’m so grateful for the help, I’ll share my experience if it could be helpful for others…. (I’m not a medical professional, and this is not advice but my own experience)
-If you are like me, you’ve spent much money (thousands) on ‘supplements/docs/copay’s over the years and may be shy about wasting more money. However, the zinc, b6 (or p-5-p) and evening primrose are affordable. Splurge on the zinc assay (I couldn’t find the one that Trudy recommended, but found another). Anyway, it’s worth the peace of mind to know when you are at optimal zinc levels (I’m not yet).
-All zinc products are not the same. I have crazy stretch marks from having kids (ugh). I always wondered why and it led me to zinc as a possibility. I tried a well-known liquid brand with ‘no-good’ results many times over the years. Guess what? It had COPPER added. Agh!
-Speaking of copper, about 15 years ago I had a copper IUD for over a year. I would mark that as the time that things went from bad to worse. My body rejected it and I had to get it removed in a hurry. I tried to explain that something went wrong. No one would listen and thought I was being dramatic. I’m pretty sure the woman at planned parenthood rolled her eyes. Now I understand the connection. Agh, again!
-Ever tried a new supplement and been unsure if it is helping, really? Not with this regimen. If you have Pyroluria, the odds are good you’ll respond in a noticeable way, in short order. She’s spot on about that. It took me about 5 days to pick up on changes. I’m at about 10 days now, and feel better every day. My brain is getting clearer daily and I’m not tempted with caffeine to be sharp. I also like how she suggests to trial the aminos so you are, again, not wasting time and money if it’s not for you.
-Be ready to freak out when you realize you could have got help years ago, if much of the medical establishment wasn’t backwards. Good news – at least you found the help, right?
-Diagnosing and tracking symptoms, rocks! Thank goodness for the questionnaire The cost of tests, dr visits, etc has really curtailed my ability to figure this out before. Slow down and know you body, and listen. (And, again, use that zinc assay.)
-Resist the temptation to do too many things right away. Even after lack-luster results with 5-htp over the years, I was sure serotonin was a problem anyway. I got the Lidkte tryptophan and tried it both under the tongue and by swallowing pills for 3 nights or evenings. It wasn’t good. I almost bailed on the newly-started Pyroluria protocol, but hung in there and used Vit C lozenges to pull myself out of the weird (brain fog) feeling in the mornings after trypto (b/c something you don’t need can cause negative effects). I am happy enough with my progress right now to hold off with aminos until I’ve stabilized a bit. It’s worth it, and I’m a poster child for impatience. Gaba and I have a date in the near future, though.
-As I was waiting for the supps to arrive, I found some old tyrosine I had laying around. 2 pills shaken under the tongue and I thought – wow, I don’t even need the zinc, etc. Wrong. It gave me a lift one time and that was it. Here’s my point – with the amino supps, maybe you’ll come across something that you only needed a few times? They aren’t generally meant to be life-long/every day if I understand correctly, anyway. Thinking of it like a car, maybe you just need to ‘top off’ one or two things off, or maybe you need a whole gallon (not really, but you get it right?)… depends. (P.s. Pyroluria supps are probably life long)
I’m hoping this eventually helps with…. decades…. old bad breath and body odor issues that has been traumatizing and that doctors wouldn’t (couldn’t?) help me address. I’m also adding in some Vit D (I tend to run low, always), Iron (sparingly, also tend to run low). And, a (Trudy recommended) multi along with glutamine that I had already anyway, and I’ll finish up the inositol. I also take a bit of baking soda in water away from meals, a few times a week to help with alkalizing.
This whole ordeal opens your eyes, and it makes you kinder towards others because you never know what people are struggling with, right?
Blessings and hang on!
What does evening primrose oil do for pyrolurics? And at what dosage? I take it for some neuropathy pain although I am told mine is not neuropathy. Whatever it is, the stabs of pain in my feet hurt like ####.
Mary
This omega-6 is typically low in pyrolurics and it helps with zinc absorption.
When I hear “stabs of pain in my feet hurt like ####” – my first thought is dietary oxalate issues. What does your typically 3 day diet log look like?
I saw Mercola’s article on oxalates and yes my diet is high in oxalate. I deal with so many health condidions I don’t feel I can make much change. The evening primrose oil does help the stabs of pain. Tonight I read a long article (19 pages)by Walter Last about Pyroluria and Candida which answers a lot of questions. I feel like a poster child for pyroluria. He does mention neuropathy. Trudy, I just want to thank you for all the information you share.
Hi Trudy
I have been taking the supplements for pyloria which helped enormously but in the last few weeks I wake up with numb hands and tingling – I cut down my B6 (some days not taking it at all) but it hasn’t made any difference. Do you think I can still take B6 safely? I am so disappointed that I can’t take all the supplements for pyloria as my social anxiety improved so much on them, my anxiety has returned .
Do you have any advice that would help please?