Introduction
Hello everyone. I found this website today and have been reading it for hours along with scientific articles regarding vitamin B6 (PLP/P5P etc) toxicity. My specific interest was whether PLP plasma concentrations were noted. I got enough information from the free publications to hypothesize that PLP (as opposed to the other B6 vitamers) is likely the mechanism for causing peripheral neuropathy. I then learned that I need to be concerned about my low B12 and that it appears, my hypothyroidism, my blood tests, and diet are all connected.

Why am I here?
I am here because I think I have signs of neuropathy that perhaps are getting worse (or maybe just seem that way now that I am hypervigilant about them). I remember having them for possibly a year or two. I am hoping someone here can assist me in deciding the best course of action. I suspect I may have a gene mutation that requires me to supplement with B6 and B12, (perhaps other B vitamins too) which would comprise the entirety of my treatment plan for my condition.

As a lay person without access to a knowledgeable or willing doctor, I am unsure about all this. As you all are aware, medicine/biochemistry is probably exceptionally complex. I am still searching for a doctor that won’t dismiss my blood tests as ‘nothing to worry about’.

Today was abysmal, having seen my doctor a couple of days ago, her reluctance to help, her ignorance, her use of a search engine in front of me to look up ideas to explain my B6 (well at least she tried I suppose), and her insistence that elevated B6 is nothing to worry about, finally sapped almost all the hope out of me. Yet, here I am, having crawled out of the abyss, with the tiny bit of hope I have left, writing to you guys.

Don’t worry, even if you can’t help, reading here has already helped me more than my doctors ever have. Watching the B12 documentary with Sally Pacholok was so illuminating. For the information I’ve learned from people coming here and sharing their stories and for those that have knowledge to share, I am grateful to you already, so there’s no pressure to help


My PN symptoms
My recollection of symptoms is suspect because I think this is an insidious problem that has been masked by medication and anxiety for maybe a few years. For about 12 months or so, I had pins and needles in my arms, which I thought were caused by sleeping on my arms awkwardly. Despite exercising regularly, eating a diet that is devoid of processed food, not drinking or smoking, and getting plenty of sleep, I thought I should not be getting any circulation problems.

I developed chilblains on my fingertips, although it is a cold house, I didn’t normally get those other than on my toes in very cold weather. I would often not notice how cold my toes and fingers were before it was too late. Over the last couple of months I started wearing gloves almost all day and I have been wearing thick socks for years to avoid chilblains. I often had hot and tingling hands, sometimes feet, at night.

I suspected my symptoms to be caused in part by the gloves and socks. I also attributed the pins and needles in my arms to fluoxetine because when I came off it, all the tingling, pins and needles sensations dissipated. Over the last week, I stopped wearing gloves and noticed my hands felt slightly tingly, hot, and they felt like someone is holding them and squeezing them gently between theirs. I read in another thread here someone describing it as 'altered sensation', which really matches my perception of it. I use a computer all day most days, so I think I can be prone to repetitive strain injuries but with exercise and regular breaks I don't think I get many symptoms of that other than the occasional mild ache.

Whether this is PN or not, I am almost convinced that it is the precursor to some neurological problem that has been brewing for some time and the fact that it is now increasingly noticeable, albeit slowly, means I must tackle it now! I imagine some people may think this is nothing to be alarmed about but it is my B6 and B12 blood tests below that alarm and stress me. Sure, my symptoms can be almost forgotten when I am focused or distracted but that won’t hide the fact that my B6 levels are elevated despite never having taken a B6 supplement for years; last time was a modest amount in a multivitamin roughly 3 years ago.

I am lucky to know a very nice dietician. I can’t reach her very often and see her even less often due to her long waiting list. I don’t care that she doesn’t know why my B6 is high, I just appreciate that she is a nice person that shows a generous amount of empathy and as a consequence wants to help me with this if she can. Without her, I would not have been able to convince the doctor to have my B6 tested, so I am grateful for that. I have other symptoms that I am not sure are relevant and I think can be explained adequately as side effects of my medication but the most problematic is lethargy (from trial and error though I would consider fluoxetine to be the primary cause).


My medical status
Age: The fun side of 40 (:P)
BMI: 23
Non-autoimmune (my presumption) hypothyroidism (asymptomatic): TSH: 3.718mUI/L on 2017 01 16 at 25μg levothyroxine (lab safety parameters: 0.38 to 5.33mUI/L); (antithyroglobulin: 320 UI/mL (equivocal), antithyroperoxydase: <33.4 UI/mL (negative)).
Elevated vitamin B6: Vitamin B6/PLP/P5P/Pyridoxal phosphate via HPLC: 172nmol/L on 2017 01 16; 143nmol/L on 2016 09 16 (lab safety parameters: 35 to 110nmol/L)
*LOW* vitamin B12: Vitamin B12 via Beckman chimiluminescence: 260 pg/mL on 2016 09 14 (lab safety parameters: 180 to 914)

Sufficient liver function: transaminases SGOT ASAT: 24 UI/L (lab safety parameter: <41); transaminases SGPT ALAT: 30 UI/L (lab safety parameter: <42) Gamma-glutamyl transferase: 14 UI/L (lab safety parameters: 8 to 61) all on 2015 08 05
Sufficient renal function: GFR using MDRD formula: 102 ml/min on 2015 03 18 (lab safety parameter: >60)

SSRI discontinuation syndrome (from fluoxetine/Prozac): The iatrogenic aftermath of discontinuing fluoxetine too suddenly has been the hardest thing I’ve ever dealt with. I am recovering thanks to the help at ** For those interested, I am in a stabilisation phase at the moment, having reinstated. I will taper later this year using the 10% method with long holds, using water titration and syringes. I am well on my way to full recovery from my original condition, (under the anxiety umbrella), thanks to Cognitive Behavioural Therapy (self-taught via excellent books).

Lifestyle, diet, supplements, and medication
I had a look at the foods I eat that contain vitamin B6: These foods are almost my entire diet (aside from lots of fruit and nuts). So far I have learned that aside from renal insufficiency, a few other medical conditions that I don’t have, supplementing with B6, which I don’t do, and a genetic mutation, which I may have (which I still need to learn more about), it isn’t possible to have a plasma concentration of PLP as high as mine.
I eat these almost daily (usually every two days at least): sardines, spinach, cabbage, cauliflower, banana, broccoli, carrots, 500g lentils
I eat these at least once a week: brussels sprouts, tuna, leeks, chili peppers, avocado, beetroot I eat these every two to four weeks: salmon, peppers, asparagus, green peas, onions, pineapple, green beans, celery, strawberries, watermelon, lettuce, figs I only drink water and consume ~2 litres per day.
I try to exercise daily but that has become difficult the last week or so due to feeling so down about all this.

I take these supplements daily:
400mg Calcium
200mg Magnesium
25μg Vitamin D3
22mg Zinc
100μg Selenium

I take these supplements one day per week:
20mg Iron
225μg Iodine
1000mg Vitamin C

Having read the B12 thread and looked at some links and resources here, I have added this to my daily consumption (starting today):
5x1000μg Methylcobalamin (sublingual)
Starting not long after my B12 blood test (or perhaps not long before, I cannot recall), I used to take 1x1000μg Methylcobalamin (sublingual) a week.

My medication is currently: 20mg fluoxetine daily, 25μg levothyroxine daily.

Questions
I’d love to hear from anyone who has had elevated B6/PLP/P5P plasma concentrations without taking supplements. If you managed to get the levels down, how did you manage? If your B12 was a problem, please let me know too. I have heard a number of hypotheses about elevated B6 that I cannot find much objective evidence for. I am open-minded but I think the crux of this problem lies either in B12, perhaps my medication or supplements, or a genetic condition. If anyone can shed a little light on this, I would be grateful eternally. If there is any more information you need from me to help me with this, I can try to get it; i.e. other blood tests that I didn't think of sharing.

Wishing you moments of laughter and happiness whenever you can get them,

Kittygiggles.