I recently received a question about the possible connection between pectus excavatum and pyroluria, a social anxiety condition. In layman’s terms, pectus excavatum is a depression or indentation in the chest wall and is related to problems with connective tissue. This Medscape article describes it as follows:
Pectus excavatum, also known as sunken or funnel chest, is a congenital chest wall deformity in which several ribs and the sternum grow abnormally, producing a concave, or caved-in, appearance in the anterior chest wall.
It’s not something I’m familiar with other than seeing someone with this condition at the beach once (I share some pictures below) and when doing the research for this blog.
The question was posed in relation to a blog on Joint hypermobility / Ehlers-Danlos Syndrome, a connective tissue disorder that does seem to be common in those with pyroluria.
In case you’re new to pyroluria, it is a genetic condition that is frequently associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. People with this problem experience varying degrees of anxiety or fear, often starting in childhood, but they usually manage to cover it up and push through. They tend to build their life around one person, become more of a loner over time, have difficulty handling stress or change, and have heightened anxiety symptoms when under more stress. You can read more about it here.
There are also connective tissue symptoms with pyroluria with the following commonly a factor: joints popping, cracking, or aching; pain or discomfort between the shoulder blades; and/or cartilage problems. This is often due to low levels of zinc. Here is the entire pyroluria questionnaire.
Addressing low levels of the mineral zinc and vitamin B6, together with some other nutrients and stress management, are key to addressing pyroluria symptoms. The social anxiety can typically be lifted in a week and the joint and pain problems often ease in 1 to 2 months.
So now that I’ve set things up with an overview of pyroluria and EDS and the connective tissue problems, let me share what I uncovered about pectus excavatum and why I feel there is very likely a connection with pyroluria.
Pectus excavatum and low zinc – impacting connective tissue and psychological impairment
According to this 2012 paper, Pectus excavatum: history, hypotheses and treatment options
Pectus excavatum (PE) … is the most common chest wall deformity, representing 90% of all cases. Depending on the severity of PE, deviations of thoracic organs and spine deformities are known. Although PE in most instances has little or no influence on the function of the inner organs, the cosmetic appearance of the patients leads to psychological impairment which requires therapy.
In the above paper, they write about one of the hypotheses: weak cartilage through metabolism dysfunction. They report decreased levels of zinc in the pectus excavatum patients, suggesting “the lack of zinc in the diet results in a lower metabolic activity of chondrocytes.” Chondrocytes are cells found in cartilage connective tissue. In summary, one hypothesis is that low dietary zinc affects cartilage connective tissue in some individuals with pectus excavatum.
Observe the mention of psychological impairment. Could the low zinc be playing a role in this too? I address this below.
Pectus excavatum and Ehlers-Danlos, plus dental crowding
This paper, Pectus Excavatum and Heritable Disorders of the Connective Tissue, make the connective tissue and Ehlers-Danlos connection:
It seems clear that several patients affected by pectus excavatum display a typical association with connective tissue disorders, which may span from mild form like simple laxity without morbidity associated, to more severe forms such as MFS and Ehlers-Danlos syndrome
This paper also mentions “Highly arched palate with dental crowding” which is common in pyroluria and seems to be related to low levels of zinc.
The image below illustrates a moderate/severe form of pectus excavatum.
Chest picture of an adolescent affected by a moderate/severe form of pectus excavatum. Written consent was obtained from the patient and the patient’s parents for publication of this image.
Vitamin B6 and high homocysteine
With regards to vitamin B6, one of the other key nutrients needed for pyroluria, one paper, Pectus carinatum repair in an adolescent with hyperhomocysteinaemia: Anaesthetic implications reports a case of a 14-year-old boy with high homocysteine. his level was 18.5 μmol/l (normal levels are within 7–10 μmol/l). He was treated with folic acid, Vitamin B6 and B12 supplements. Is this common in all cases of chest wall deformities? I don’t know but it would interesting to find out.
Pectus excavatum: social anxiety and depression
There are some older studies that report mental health symptoms, including social anxiety are common. In this 1999 paper, Funnel chest. Psychological and psychosomatic aspects in children, youngsters, and young adults, they report these reactions in children older than 11:
embarassment reactions, social anxiety, feelings of stigma, limited capacity for work, orientation towards failure, reduced tolerance of frustration and temptation, limited capacity for communication and even markedly depressive reactions are observed.
It’s understandable that the physical manifestations of this condition would lead to some of these feelings but I have to question how much of this could also be related to low zinc and low vitamin B6. Both nutrients are needed for easing pyroluria/social anxiety symptoms and making neurotransmitters such as serotonin.
Other than trying to make some connections with the research, when this question was asked on facebook, a number of people said they (or a family member) has both pyroluria and pectus excavatum.
If you do have pectus excavatum and pyroluria, getting on the pyroluria protocol will:
- ease some of the social anxiety and depressive symptoms
- very likely lead to less pain and discomfort
- very possibly prevent further connective tissue issues
- feasibly prevent pectus excavatum in future children or perhaps reduce the severity in the instance where zinc is a factor (this one is a long shot that I feel is worth further research)
I’d love to gather more information and am looking for feedback so please do share your symptoms and experiences in the comments. Let us know if you or your child or other family member has pectus excavatum and any of the following:
- A score 15 or more on the pyroluria questionnaire and/or suffer from social anxiety
- Have low zinc
- Have low B6 (poor dream recall or nightmares is a clue)
- Have high homocysteine i.e. above 10 μmol/l
- Ehlers-Danlos syndrome or joint hypermobility
- Dental crowding
Resources for you
- My book The Antianxiety Food Solution (my Amazon affiliate link) has an entire chapter on pyroluria. Read it and become a savvy health-advocate for yourself. Share a copy with your doctor and point out the references.
- Here is a blog if you’re new to pyroluria and the associated conditions.
- Here is the pyroluria questionnaire.
- You can find the pyroluria products in my supplement store here.
We had a baby bon with respiratory difficulties including a collapsed middle lobe. This was reflected in what we commonly call “pigeon chest”. They wanted to remove the lobe. He appears to have outgrown it, playing football for his HS team.
David
Thanks for sharing and glad to hear he’s outgrown it and is doing well. Keep in mind the possible connection with pyroluria and other connective tissue issues.
This is interesting. Hyper mobile joints and connective tissue is common in my family. I have hEDS well as mild pyroluria and “ pigeon breast”. Another relative also had pigeon breast.
JA
Thanks for sharing. Hopefully the supplements for pyroluria is helping. May I ask which pyroluria symptoms you have – low zinc, low B6 (poor dream recall or nightmares is a clue) and social anxiety?
Do you also tend to have high homocysteine i.e. above 10 μmol/l and dental crowding/teeth issues?
What are your hEDS (Hypermobile type Ehlers-Danlos syndrome) symptoms?
Trudy, I have a gene snp for low B6; my homocysteine is towards the high end; and I had to wear a teeth straightener as a child due to a smallish jaw with big teeth. As for hEDS, I have had super flexible shoulders, finger, feet, knees, hip joints and ankles since about age 9 or 10. I could painlessly pull my shoulder socket apart and shock friends and family with that stunt. My mother said I was “ double jointed”. Also, I had zinc deficiency since childhood (white spots on fingernails that go away when I supplement with zinc picolinate.
I have had lifelong social anxiety; but good dream recall ( I take a B-vitamin supplement which, no doubt, helps! ). As you mentioned in your checklist of pyroluria and EDS, my mom came from a family of all girls, my mom had all daughters, and my sisters had all daughters.
You are onto something here. My child has PE and EDS and high arch and early signs of pyoluria, he’s under age 10.
Thanks for sharing Christina – keep in mind that the pyroluria protocol helps with connective tissue issues as well as the social anxiety symptoms. I’ve seen young children blossom socially when they address the nutrient deficiencies
I, my father and my son all have strong symptoms of pyroluria and have sunken chests. I have been self medicating with these supplements, glad to know I was on the right track. I need to learn more and see if I can’t convince my son to read this. Thanks Trudy!
This is a very interesting connection. My oldest child had the Nuss procedure for pectins excavatum and has suffered from social anxiety. My middle child was recently diagnosed with JHS/Ehlers-Danlos and has had Lyme, Bartonella and debilitating anxiety, though more generalized and agoraphobia types. I am trying to educate myself about pyroluria now. I hope to find more peer reviewed research about pyroluria that I can bring to our medical professionals.
Leah
Thanks for contributing to the discussion and being open to learning about pyroluria. I wouldn’t count on your medical professionals being open to pyroluria unless they are functional medicine doctors and even some of them are not familiar with it. You may find this useful as it has links to 2 papers on the topic and some history https://www.everywomanover29.com/blog/pyroluria-mauve-pyrrole-malvaria-kryptopyrroles-social-anxiety/
Do you also recommend a copper supplementation or is the ratio so off balance that supplementing is not needed until levels of maintenence?
Kat
We get enough copper in our diets so I don’t recommend supplementation
My pyroluric son has pectus excavatum and hyper mobile joints. We’re in the process of getting him tested for Marfans syndrome we’ve also had a couple of aneurysms in my family (although none under the age of 60 which would be more likely to indicate Marfan). I note that in your article you suggest that low zinc could cause the PE. I’ve just been reading a wikipedia article on homocystinuria which also causes PE and hypermobility. Interestingly the treatment for homocystinuria is B6, not zinc.
https://en.wikipedia.org/wiki/Homocystinuria
JoJo
Thanks for sharing this connection to homocystinuria. B6 is also part of the pyroluria protocol. Does he have social anxiety and how does he score on the questionnaire?
Yes he is on B6 & zinc. Just thought I’d mention it because in your article you said you were wondering whether low zinc caused PE but this indicates it could be low B6 that causes it (and results in the connection with pyroluria). I haven’t done the questionnaire; he was diagnosed with pyroluria a number of years ago.
My mother, myself and my son all have a combination of pectus excavatum and pectus carinatum. I have suffered from anxiety, depression and panic attacks since my teens. I am also very nervous and anxious when public speaking although I am forcing myself to do it in my current work. On your pyroluria questionnaire, I scored 18 with about 13 being in the top column. My son has also suffered from anxiety since he was around 10 and was diagnosed with ADHD. He is 20 now and has struggled with addiction since his teens. He also has a gluten sensitivity but isn’t willing to change his diet at this time.
I was so intrigued to find your articles and all of the information here! I am a personal development coach and I work with high-achieving women who struggle with stress, anxiety and overwhelm, so I am always looking for information and resources that will support myself and my clients. Thank you so much for your work in this area! I am definitely going to recommend your books and blogs to my clients and family members!
Charmaine
Thanks for sharing here. I have pyroluria and when I’m on the protocol public speaking (and mingling with everyone afterwards) is a breeze instead of being forced. Using GABA for the physical tension during speaking and tryptophan for the fear type of anxiety helps many speakers too. Addressing pyroluria and the brain chemical imbalances help with addictions and ADHD too, and make it easy to quit gluten (which is often used for self-medication) and other drugs-of-choice (caffeine, alcohol, sugar, street drugs and prescriptions)
I’m so glad to hear you enjoyed this article and my blogs and book. Thanks for being willing to share with your clients. Your work is important and they’ll appreciate you even more.
Please keep me posted on how this goes with you and your family and clients as you learn more.
I have been researching your protocol for pyroluria for several years now. I score very high on your test. I have tried GABA once and hated my reaction, it felt like a panic attack. I have purchase the Lidke tryptopan that you suggest; however, I have too much anxiety to use it yet! For the past several years, I have implemented the zinc, B6, EPO protocol without much success. I am now on benzodiazapine (and would like to wean off). It worked for awhile and helped with insomnia. It is no longer is working like it once did. My symptoms are pretty severe. I do run my own business, which is successful; however, I feel like I need something (xanax) to be able to function at all.
Interestingly, I was also born with pectus excavatum. I was told I inherited the deformity from my grandpa, and also one of my uncles was born with it. I have passed a slight case to my oldest daughter. So, I am one more person (female) that falls into your theory that there may be a link.
Renee
Thanks for sharing your story. This is how we tackle things when someone isn’t responding to the pyroluria protocol https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/ You’ll notice benzodiazapines are on the list.
Also keep in mind that too much GABA can lead to a bad reaction. I start with 125mg and less for very sensitive clients
Hi Trudy, I worked with you through Julia Ross when I went through her program “Mood Cure”. I happened upon this article online when I was looking for support for my own continuing digestive issues. My son suffers from severe debilitating anxiety and insomnia, and more recently depression. What caught my eye was the “pectus excavatum” in the title. My son had two surgeries in high school for pectus CARINATUM, which is the reverse (chest wall protrudes). Now I’m also wondering if his open heart surgery a year and half ago could also be related (defective valve had to be replaced). I have always wondered if he might have pyroluria, not making any connection to the pectus carinatum but because I supplement for it for myself, having many of the symptoms from the checklist, and he has many of the symptoms as well.
Hi Mary Lynn
Super to see you here! I would expect there to be similar connections to Pectus Carinatum given both are connective tissue/cartilage conditions – Pectus Excavatum and Pectus Carinatum: Associated Conditions, Family History, and Postoperative Patient Satisfaction https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4757394/
As you know if someone scores > 15 on the pyroluria questionnaire it’s worth a trial of the protocol. With anxiety/depression and insomnia I also always look into low serotonin/low GABA and the use of amino acids (more here on low GABA anxiety as one example https://www.everywomanover29.com/blog/gaba-physical-tension-stiff-tense-muscles-type-anxiety/) as well as looking at all other root causes – like gut health, adrenals, diet, blood sugar etc
If someone has new anxiety/depression/insomnia post-surgery I’d recommend looking at the microbiome because of antibiotics, low B12, metals/material used in surgery etc
Hello, I have a question regarding Pyrolle Disorder. My family(ancestors) all only girls, all of them diagnosed with hyperflexibility and hip-displasia. Me and my daughter are positive tested on Pyroluria. Have you ever heard about hip displasia and Pyroluria? Also I habe strong Melasma since a decade. Is there a connection?! Would love to hear from you. Best Regards Fabienne
Fabienne
Thanks for your question. I’m intrigued by a possible connection given what we know about pyroluria and pectus excavatum, joint/connective tissue/cartilage problems, and hyperflexibility/Ehlers Danlos syndrome (https://www.everywomanover29.com/blog/joint-hypermobility-ehlers-danlos-syndrome-pyroluria/)
This paper, “Developmental dysplasia of the hip: a systematic literature review of the genes related with its occurrence” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6836073/) mentions a genetic aspect, female gender, and genetic impacts on zinc-binding protein affecting the skeleton i.e. a few things that may support a connection. I’ll look out for connections in the future.
Can you kindly share which symptoms you and your daughter have on the pyroluria questionnaire? https://www.everywomanover29.com/blog/pyroluria-questionnaire-from-the-antianxiety-food-solution/ And if the pyroluria protocol is helping with social anxiety?