I've looked at many forums and done a lot of research but I have just been diagnosed with pyroluria at the age of 30 and I live in Australia.
I'll try to keep it short...I guess I suffered from anxiety from about the age of 8 or so that I can remember and this turned into what I now know was Depression with panic attacks since about 16 or 17. I had what you would call an emotional abusive childhood and I never told any family members but even my now husband until I finally had a breakdown I guess at about 26. I had convinced myself that I felt bad because I was a bad person and just assumed that I wasn't a good person so I was being punished.
I was out on Effexor xr and have been on this for 4 years and have never been able to come off due to withdrawal. I just finished regular therapy after 4 years and I've come through my thoughts and issues with my past and I've learnt to control it but the physical symptoms of panic I still feel and it was suggested by my therapist I be tested for pyroluria at a specialist she knew and so I went and got the expensive testing after she showed me some symptoms that I agreed with but was still way way skeptical that my issues could be fixed by something like vitamins!
Anyway I have pyroluria and over methylation - she said she was surprised by the combo but explained what it meant and we had a good chat about symptoms. I tend to panic, I'm a massive overachiever, I'm incredibly dry and was also diagnosed with scleroderma on my skin a type of eczema scarring if you will a year ago. I don't sleep, doesn't matter how tired I get if there is something going on I will just power on and I know now that affects my moods, I have anxiety, headaches all the time, ringing in my ears often like after you have been to a concert or something. My mum and me laughed when we read the lists because my mum knew over my life that I have mentioned many of these things to her and we always laughed and said just another weird thing to add to my unique personality haha even as a kid my mum said you always used to say you were dry sometimes I wouldn't want to go in the shower because in the winter the hot water would just make me feel so dry and awful but yet I never had any skin ailments until I was 19. I had hearing testing in school and they called my parents in because they were worried I couldn't hear properly (my mum is completely deaf in one ear) but I was really just a bad listener something my husband says all the time! Haha my mum said that I always talked talked talked and seemed a nervous kid but I was always so outgoing that she was so surprised when I told her how I really felt inside my whole life.
My dads side have diabetes and heart disease and as diabetes is an autoimmune condition and my skin thing is autoimmune I have been advised to get testing every 12 months just to check but up until now I'm all good. My mother's side have a lot of schizophrenia (my mum somehow turned out the best mum anyone could ask for considering her family) and my dads side has a lot of ADHD so all these things link in the big picture in terms of family history. My mum and sister suffer terrible Psoriasis and almost every woman in my family has polycystic ovaries - my two sisters my aunt my mum - but I have absolutely no issues in that department.
Anyway I'm starting on a vitamin cocktail today including evening primrose oil three times a day, manganese bisglycinate (750% of normal daily value) times one a day, zinc as picolinate primer times one a day, biotress times one with breakfast, magmax powder - dissolved in water once a day - I have been told these are the most important ones but I've been told to take l acetyl cysteine and GABA mood assist I just have to go back to the chemist. I still take my Effexor 150mg once a day but the specialist lady seems to be convinced I won't need the Effexor once I'm feeling better.
I'm still thinking - is this for real? Maybe I should just take my one Effexor a day and just accept that I have an anxious disposition and a crappy skin ailment - I'm really happy with life right now but if this does work and I can come off my medication and have way more energy and get good sleep and not feel so tense inside even when I'm not that tense in my mind that would be great.
Has anyone got a story? Have you been treated and can you notice a difference? I just feel like a Guinea pig but I guess if it's just vitamins then there's no harm in trying! But it's a tiny touch with expensive: