PYROLURIA? ANYBODY HAVE EXPERIENCE WITH THIS CONDITION? I UNDERSTAND IT HAS SOMETHING TO DO WITH ANXIETY

I stumbled over info re this condition while researching thyroid and anxiety. Had no idea there was such a thing so looked it up. Would like to know if anyone has experience with this or even had a doctor who knows what it is. Supposedly it is anxiety that can be caused by deficiencies in zinc and B6. And is treated by diet? and supplements. That's all I know. Thanks. irina1975

[10gingercats]

There is vague info on this on Thyroid Uk Healthunlocked....with rec. labs. that test for it....so they say.None if it sounds particularly 'scientific'. to me....the best indicator points in the direction of a lack of b6 and a lack of zinc.

[Hidden in reply to 10gingercats]

Thanks gingercats That is what my initial research showed. Apparently it is a fairly unknown condition-like fibromyalgia and chronic fatigue syndrome were when little was known. I'll continue to do research and I do know that one dr who is on this bandwagon is a Florida neurologist-Dr David Perlmutter MD. I have seen his shows on PBS and read some of his books (current one being Grain Brain.) He has a lot of credibility with me. I met him as a boy when his father-a neurosurgeon I worked with in the 60's and 70's in the O.R. (Mount Sinai Hosp in Miami Beach) brought him to the hospital sometimes..Dr Perlmutter's dad died of Alzheimers ( was a great neurosurgeon and the son is now very interested in preventing brain problems as we age.) I am interested in this also as my brother had dementia when he died. It's so interesting (including the gut-brain connection) to me how diet and nutrition are so important yet often unrecognized as being such a big part of good health. Maybe anxiety connected to thyroid, a-fib and other illnesses are tied together with problems originating in the gut. Who knows? Thanks again for your reply. Take care. irina1975

[researchx in reply to Hidden]

Are you going to get the test done?I dont know what to think after reading about it

[secondtry]

The research I have done over the last 4 years leaves me in no doubt that the majority of health issues can be reversed by the right diet and exercise. Love Functional Medicine. Keep up the good work!

[Hidden in reply to secondtry]

Hi. I agree there are a lot of good medical ideas out there other than conventional. I'm grateful for conventional because it's often pulled me through. And still does. But it doesn't mean I can't add some functional/naturopathic/holistic facets to the mix. But I think there are other alternative-type med info that could be used in conjuction with the tried and true. We have to be discerning in what we try but isn't it possible much of our 'standard scientific medical knowledge was once mostly anecdotal without scientific proof it worked? Will continue to research this illness and will post what I find. I did find a reference to a book -2 actually-that I want to look into: 1("A Mind of Your Own" by Kelly Brogan and 2) "The Anti-anxiety Food Solution by Trudy Scott. Also found a website: conqueringpyroluria.com I also found an article in "OCALA magazine by April Weedman. Apparently pyroluria is a social anxiety disorder that can be easily treated with zinc and B6. Couldn't find any info in other HU forums- anxiety, etc, and as anxiety is a common thread for me in my 3 communities(a-fib/rls/ and thyroidUK i thought I would start by writing my post here. I have had an anxiety disorder all my life and believe being able to get a better handle on my emotional response to my illnesses might help me all around. Sorry if it doesn't seem to fit in here. But from my early findings thought it might be helpful to others and wanted to share. I'm excited re the little I've learned so far. Thanks for listening. irina1975

[AnneTS]

You have raised a very interesting topic Irina. I am going to pursue that train of investigation myself. One of the many things I like about this forum if the number if highly intelligent posters who prod the old grey matter!! Annel

[Polski]

There can be mild versions of it, causing anxiety, but it can also be connected with schizophrenia. See

diagnose-me.com/symptoms-of...

Long term supplementation with Zinc and vitamin B6 appear to deal with it.

[Hidden in reply to Polski]

Thank you Polski. Slowly adding to my 'info arsenal'. irina1975

[Beaton69]

Hi my young adult son was diagnosed with adhd at age 19- combined - hyper and inattentive- I read up on a Dr William Walsh and nutrigenetics - and things were ticking boxes with my son re pyroluria- pale skin, delayed puberty, arguing for the sake of arguing, no appetite, very slim, - i took him for blood testing and the results were high copper, low zinc, low B6 and tested positive for pyroluria- he has been on a huge vitamin regime now for about 4 months- compliance is hit and miss- as in another thing for me to insist he takes - his work has noticed a difference, he is calmer, he is eating more, sleeping better, - Im still wondering if he has adhd or possible anxiety or both. Very interesting things Ive found also MTHFR gene and the mischief that plays.

[Hidden in reply to Beaton69]

Do you feel comfortable giving me the doses of zinc and B6 your son takes? Please feel free to PM me if you want.

Thank you so much. Take care irina

[Hollybushroad in reply to Beaton69]

Hi Iknow your original post is old but I'm interested in protocol for pyroluria. I tested strongly positive. My main symptom is life long anxiety which has got worse over past few years. I'm 55.

My nutrionist seems to know very little about it.

I've read about the Walsh Protocol but they seem to use mega high doses of Vit B6. I want to start slow and work up gradually as I have adrenal fatigue and don't want to rush in with high doses that may make things worse.

My copper/zinc ratio is slightly high too and I've read if you start on too much zinc it can exacerbate anxiety symptoms.

Any guidance would be much appreciated.

Thanks

[Patient0]

Hi, I just saw your post and wondered what you discovered? I'm researching along these lines. I'm a Biochemist and I am in a situation where I need to look into alternatives. I would also like to help my children to prevent going down the anxiety etc route in future.