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Old 02-02-2017, 05:47 PM #1
Kittygiggles Kittygiggles is offline
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Book Elevated B6 without supplementation; low B12; early PN

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.

Last edited by Chemar; 02-03-2017 at 02:15 PM. Reason: edited per member request: "Elevated" B12 edited to "Low"
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Old 02-03-2017, 10:37 AM #2
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Welcome to NeuroTalk...

Here is a good overview of B6 metabolism:
Vitamin B6, The Under-Appreciated Vitamin - Weston A Price

The gist of your post suggests to me that it is possible your blood was mishandled and therefore resulted in lysed cells (burst). B6 is in red blood cells and when they burst they release B6 into the serum causing a false high reading. This also happens with potassium testing. These artificial readings are called factitious.

Either that or the lab you are using is not calibrating its B6 samples properly so the whole test may be "off".

You do need to take B12 properly to have it be absorbed.
That means on an empty stomach once a day.

I think you should get a zinc test (and also a zinc/copper ratio).
There are posters here who tested very low in copper. Low copper is also found in MS patients, for some reason, and they get copper testing by their MS doctors, for this reason. High serum zinc can cause PN symptoms, and this was discovered by evaluating people who were "eating" their false teeth adhesives (or using too much) Today in US zinc is no longer in those products for this reason.

People who are anxious types breathe differently than others and this leads to minor increases in acid in the blood. Learning to breathe more normally can help this and reduce tingling feelings in those patients. There are many meditation sites on the net that teach calming breathing, and they can be very helpful for overly anxious patients. Some doctors use low dose tryptophan for their patients coming off SSRI's. Discuss this with your doctor. You can search this topic also on Google.
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Last edited by mrsD; 02-03-2017 at 03:48 PM.
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Old 02-03-2017, 01:29 PM #3
Kittygiggles Kittygiggles is offline
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Quote:
Originally Posted by mrsD View Post

You listed your B12 in your list as "elevated"...and that appears to be a typo or error? You do need to take B12 properly to have it be absorbed.
That means on an empty stomach once a day.
Absolutely! I am sorry for that error. I did mean low, especially as I read from here that 400 is the new low, and elsewhere I learned that in Japan they can consider 500 to be the cut-off for a low plasma concentration. Is there any way I would be permitted to edit my post? If not, would a moderator be allowed to just change it from 'Elevated' to 'Low'?

In light of my blood test, would you recommend continuing to supplement B12? I take B12 on an empty stomach, along with my medication, and vitamin D. Prior to the daily B12 supplementation I used to wait about an hour before eating; should I extend that waiting period? I've no problem doing so.

I am searching for a new doctor as my current one is reluctant to issue blood tests or for some reason 'compromises' and allows one or two things but not others, which is aggravating. I discuss my decisions with my dietician, who in turn does consult with doctors she knows; I'm in the process of getting their details but communication with her is slow.

As for zinc, I am happy to add this to my test. I started taking selenium, zinc, and iodine as I was advised they were useful for thyroid disorders. Having looked at my diet I can see lentils contain a great deal of zinc, and at the volume I eat them, I think I will stop taking it. My symptoms seemed more noticeable since taking zinc (about a few months ago).

Thank you for the advice about anxiety and breathing. I practice appropriate breathing when I am anxious and it works wonders. Still, I can forget sometimes. In addition, I suspect fluoxetine to be a culprit in this but also, I know very well the physical changes that happen with me when I am anxious, including tingling. However, this suspected PN seems constant.

I am so grateful to you for responding. Looking back at my post I can see it was a wall of text and I thought that perhaps it would put people off. Thank you again.
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Old 02-04-2017, 11:29 AM #4
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Quote:
Originally Posted by mrsD View Post
People who are anxious types breathe differently than others and this leads to minor increases in acid in the blood. Learning to breathe more normally can help this and reduce tingling feelings in those patients. There are many meditation sites on the net that teach calming breathing, and they can be very helpful for overly anxious patients. Some doctors use low dose tryptophan for their patients coming off SSRI's. Discuss this with your doctor. You can search this topic also on Google.
This is super interesting to me because the last neurologist I saw tried telling me that I don't actually have neuropathy and that I'm just an anxious breather/hyperventilating. He said he could tell because I sighed a lot and my blood pressure was through the roof (which it only ever is when I go to appointments) - I said this would cause numbness in my feet, burning in my legs, and tingling all over? He couldn't answer that. I have an autoimmune disease (RA) and a positive ANA but my neuropathy doesn't respond to prednisone or any immunosuppressive medication, also doesn't respond to LDN. I haven't found ONE doctor that thinks my neuropathy is autoimmune mediated, where as I can't figure out how it isn't autoimmune mediated. But... you know, the fun of neuropathy is figuring out why it's happening, right? (that's sarcasm, of course)
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Old 02-04-2017, 12:10 PM #5
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One way you can test if your breathing is a culprit:

Do your symptoms come and go? That could suggest a breathing link (certain periods of hyperventilation or stress). It they are the same all or most of the time irregardless of activity or consuming an irritating food, or MSG, I'd think more of a RA trigger, or prediabetes, or a toxin, or virus.

This is where a daily journal could be helpful.

Some of the PN burning resembles the burning a person can get from coming into warmth after being in severe cold. Feet, hands, ears, etc, can burn when they warm up.

Just a couple of years or so ago, both my son and I got burning feet from a perch fish lunch on vacation. Within a couple of hours or less we both had to take our shoes and socks off! Less than fresh fish, harbor histamine producing bacteria. Histamine = burning and redness in some people.
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Old 02-04-2017, 03:11 PM #6
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Default Hello again

I appreciate the interest in this thread. I'd just like to iterate, in case anyone missed it:

"In light of my blood test, would you recommend continuing to supplement B12? I take B12 on an empty stomach, along with my medication, and vitamin D. Prior to the daily B12 supplementation I used to wait about an hour before eating; should I extend that waiting period? I've no problem doing so."

Sadly, my tingling and burning symptoms, although tolerable, can be distracting and are constant. I've been keeping a daily diary of symptoms, supplements, and medication for years, as part of CBT but also to manage other health issues.

I hope that my suspected PN is due to fluoxetine, which will dissipate as I taper later this year but my high B6 and low B12 are red flags that perhaps I could have a mutated relevant gene, or some imbalance/toxicity. Additionally, would the laboratory make the same mistake twice with my B6? I have heard of such a thing before but assumed it was rare.

It's only been one day but there's no improvement yet since stopping zinc.

One other symptom that I thought could be relevant is my 'vibrating fingers', i.e. shaky hands but mostly my fingers. I've had that for probably 10 years or more. Because of its duration I dismissed it as irrelevant but I am wondering about it again.
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Old 02-04-2017, 04:51 PM #7
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Your B12 is LOW... below the 400pg new low threshold.

So yes, you should continue with it.

Quest diagnostics had two episodes of faulty measurement of Vit D. Each lasting a year! It was quite the scandal as many people received inaccurate test results. They said it was because of faulty erroneous calibration. You can Google this and read more.
Never trust a lab test 100%... as errors are common.

One thing you should do is get the DNA testing for MTHFR....many people have mutations in methylation, and it is considered fairly common today. But not all doctors are up on the science.
Using methylcobalamin is one treatment but if you have the mutation(s), you need methylfolate as well.

Here is good source for further information:
MTHFR Mutation | MTHFR Gene Mutation | What is MTHFR? - MTHFR.net

Getting tapered off the Prozac may help. That is a slow process, as Prozac has a long half life.
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Old 02-04-2017, 05:19 PM #8
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Tremor is a possible side-effect of Prozac. The information here might help you in talking with your prescribing doctor Prozac Capsules - FDA prescribing information, side effects and uses.
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Old 02-04-2017, 05:47 PM #9
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You guys are awesome, thank you so much. I am so happy with your responses and advice. Now I just need to follow it and wait for results. In any case, I will keep you all updated about results of tests and any improvements. Threads where people don't update are frustrating. I can understand why though, sometimes people just want to forget their darker times! However, I really want my thread to be of use to others, not just me. So I'll update when I have new data.

Thank you all again.
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Old 02-05-2017, 01:47 PM #10
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Hi Kittygiggles

Welcome to NT. I understand the journey you're on to seek answers to your condition. Have been through much of it and like you got a massive amount of help from the wonderful posters here on Neurotalk.

Just a couple of things to add: Zinc overload is possible - although it will only become apparent slowly (and insidiously). I had that after being on a prescription dose of 50mg Elemental Zinc daily for more than 2.5 years (no follow up testing, monitoring or warnings provided!) I note that you've already stopped supplementing which is great - unless you have clinical symptoms that you may be low (eg bruises that won't heal), I would recommend not starting again without further testing. I developed PN before starting zinc and it didn't seem to affect the PN either positively or negatively. (My PN is probably secondary to an autoimmune condition).

You've probably already found in your research that Prozac can be a cause of PN so this may be your most likely cause. PN can also occur secondary to hypothyroidism - even when the condition is well manged. Also have you had your selenium blood level tested? - PN can some times be caused by too much selenium.

All the best for finding answers - keep us posted on how you get on.

Last edited by bluesfan; 02-05-2017 at 01:49 PM. Reason: grammar
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