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  Topic Review (Newest First)
02-21-2014 03:00 PM
1210donna

the pain near your ear shooting up the back of your scalp may be occipital neuralgia... I have had this as part of my peripheral neuropathy.  look it up

02-21-2014 02:56 PM
1210donna

yes, I'm in a similar situation... my diet is GF/CF/legume free/low salicylate... I have no high dietary sources of B6.  I was on two supplements that contained B6, one was 10mg, the other 40mg.  I developed progressive peripheral neuropathy and the neuro just informed me I have elevated B6.  I have read all I could on this... seems the upper daily limit is 100mg with peripheral neuropathy extremely rare with supplementation under 200mg and usual with supplementation over 1000mg... so 20 times the level I'd been on. 

 

I have also read that immune dysfunction can mess with synthesis, breakdown, absorption or excretion of B6.  I have primary immune deficiencies and allergies and food intolerances so that may figure.  Also a methylation problem may play a part... I'm salicylate intolerant which can be part of a methylation problem so in my case that might be at work.  I also stopped sweating since chemo Dec 2011 which would have reduced excretion of excess B6.  Still, like you, I'm flumoxed. 

04-17-2011 06:33 AM
Koalamom
Quote:
Originally Posted by JaneSmith1010 View Post

i've been GF for 5-6 years now. my family has irish blood which could be a problem--a lot of metabolic disorders in the genes for irish. my uncle has hemochromatosis. i was thinking if this taxes the liver it could keep me from phosphorylating pyroxidine to PSP that could then be excreted. i also have wondered if cosmetic products like proactiv could mess things up, or if certain vaccinations could instigate this sort of problem. who knows. right now i am checking all the food that i know i can eat the doesn't make me sick to see what the b6 levels in them are. i am also drinking wine with my meals to block some b6 absorption until my levels fall enough to be rid of the paresthesias, chest pain, etc. someone mentioned acute intermittent porphyria that could mess with b6/b12 levels--but i don't even know what that is exactly. i am in such a brain fog all the time i don't even comprehend what i am reading.

How is it going Jane? I just saw this old thread and with no update. My dh has porphria and I don't think he has b vitamin issues. Actually he seems to be the healthiest of the family. If you do have this disease, it is genetic and can be deadly if you are not careful of triggering an attack. You would probably know if you have it though by the many odd symptoms.
04-15-2011 09:10 AM
ameliabedelia

 

Quote:

Hi,

 I found this old thread, so don't know how current this last  one is. I also have this weird B6 toxicity problem. I was low at first & drs added it & then developed horrible 3 inch needles poking my entire body day & night. they tested it at 4 x the normal. toxic. Been off all b-6 2 yrs now & tried it in something a dr gave me & started it up all over again. It took 1 1/2 yrs to get the neuropathy down to just part of the evening & night. But when I eat too much food with B6 I go crazy agin. Every thing has b-6. Found only 4 foods that don't. I also when off gluten 1 year before this & wonder how that effected it. The only thing that has helped me is high doses of Alpha Lipoic Acid, my dr says heals nerves.

Holly

 

B6 needs to be balanced with mg.   Perhaps you are magnesium deficient and need to increase Mg to normalize B6

04-15-2011 09:09 AM
ameliabedelia

Raw milk and raw kefir/yogurt have high levels of B6 (that pasturized versions don't). If you are consuming large amounts of raw dairy, I could see that possibly being a problem IF that is combined with a vitamin.

 

However, without taking any supplements, it seems unlikely  you would have that level of B6 from food alone.  I would think it is much, much more likely that there is a metabolic/enzymatic disorder that is preventing B6 from being excreted and you really need to explore that option.

04-15-2011 08:13 AM
hollyleaf

Hi,

 I found this old thread, so don't know how current this last  one is. I also have this weird B6 toxicity problem. I was low at first & drs added it & then developed horrible 3 inch needles poking my entire body day & night. they tested it at 4 x the normal. toxic. Been off all b-6 2 yrs now & tried it in something a dr gave me & started it up all over again. It took 1 1/2 yrs to get the neuropathy down to just part of the evening & night. But when I eat too much food with B6 I go crazy agin. Every thing has b-6. Found only 4 foods that don't. I also when off gluten 1 year before this & wonder how that effected it. The only thing that has helped me is high doses of Alpha Lipoic Acid, my dr says heals nerves.

Holly

Any thoughts?

04-14-2011 05:46 PM
MARY COTE

JANE, I JUST GOT BACK FROM THE NEUROLOGIST WHO SAID  THAT I HAVE A 225 READING OF VITAMIN B6 RESULTING IN BLOOD TOXICITY AND THE NERVE DAMAGE THAT HAS PLEGED ME FOR YEARS.....NEEDLES, BEE STINGS IN VARIOUS LOCATIONS.  WILLY WORMS IN LEGS...NUMB PATCHES, SPOTS, PALMS OF HANDS, TONGUE, LIPS, ROOF OF MOUTH FEELING.....LIGHTS GOING DOWN SIDE OF OUTER CORNERS OF BOTH EYES, SOMETIMES ACROSS THE BOTTOM, AS WELL..  MORE SENSITIVE TO COLD TOUCH....I COULD GO ON AND ON.  SOUNDS CRAZY.  PAIN IN LEFT EAR THEN UP MY HEAD.  WELL ENOUGH OF THAT.  

DID YOU EVER FIND OUT IF YOU WERE NOT METABOLIZING B6 WELL AND WHY.  I AM ALSO LACTOSE AND GLUTEN INTOLERANT?  :)  THANK YOU FOR ANY HELP.  MARY COTE

12-26-2009 02:20 PM
sweet.p http://www.vitaminbcouncil.org/
I would write to one of their doctors that is listed. It sounds very uncommon, since b6 is water soluble. As you said maybe you need further testing to diagnose some underlaying cause.

Did you take any drugs to suppresses lactation or your milk supply,
B-6 can be used to suppress lactation.
12-25-2009 08:54 PM
JaneSmith1010 i've been GF for 5-6 years now. my family has irish blood which could be a problem--a lot of metabolic disorders in the genes for irish. my uncle has hemochromatosis. i was thinking if this taxes the liver it could keep me from phosphorylating pyroxidine to PSP that could then be excreted. i also have wondered if cosmetic products like proactiv could mess things up, or if certain vaccinations could instigate this sort of problem. who knows. right now i am checking all the food that i know i can eat the doesn't make me sick to see what the b6 levels in them are. i am also drinking wine with my meals to block some b6 absorption until my levels fall enough to be rid of the paresthesias, chest pain, etc. someone mentioned acute intermittent porphyria that could mess with b6/b12 levels--but i don't even know what that is exactly. i am in such a brain fog all the time i don't even comprehend what i am reading.
12-24-2009 01:14 PM
sbgrace
How hard would it be to add up your food consumption of B6 (the B6 rich foods in your diet)?
I'm thinking that might give you are starting point to determine your own "upper tolerable level".

I know this must feel overwhelming/discouraging but I'm really glad you figured out what is making you sick.

How long have you been gluten free (I'm wondering if the damage from celiac may be part of the problem here...)
I'm going to try (later) to research and see if I can find a cause of the poor metabolism/excretion that you must have.
12-24-2009 06:45 AM
JaneSmith1010 I'm not taking any other vitamins that contain B6. I checked my foods, I don't eat alot of processed foods and the ones that are enriched (like rice milk) didn't have any b6. if i drink something like vitamin water i only drink 1/4-1/3 of a bottle and it is rarely. i eat rice chex, but do so sparingly due to blood sugar issues--i have stopped that too. i have celiac so cannot eat most of the processed foods you are talking about. i have to wonder if i have a metabolic disorder/enzyme deficiency or something that keeps me from excreting the b6. it occurs naturally in so many foods that i eat regularly. i have started to realize which foods these are by how they make me feel and later have seen that they are high in b6. what the heck......
12-24-2009 12:54 AM
sbgrace Did you look at cereals and breads, pastas, bagels, breakfast bars, and the like? A lot have added B6. I'd want to know my source/there almost has to be a source together with your body not processing it well. To my knowledge they set the toxic level of intake at 100 mg. because they don't see damage until a person is consuming 200 mg. So I'm thinking that even with the supplement you've got to be getting it somewhere else too. http://lpi.oregonstate.edu/infocente...ins/vitaminB6/ This has food sources as well.
Are you taking any other vitamins?
12-24-2009 12:24 AM
JaneSmith1010 Please help me. I have been sick for months and now after rounds of testing, have found that I have b6 toxicity. safe levels are between 2.0- 32.5. i am at 84.5. i have no idea how, since i don't supplement b vitamins, i can't find anything enriched that i eat with b6 in it, etc. i was taking forvia multivitamins with 5mg/capsule, but i was taking them inconsistently and sometimes only 1 capsule/day. my FNP thinks I may have a problem excreting it- which i found odd since i have been urinating every 5 seconds (exaggerating) for a long time now. does anyone have any ideas as to what i need to be doing, not doing, looking for, etc. i can't find any info about people who don't metabolize/excrete b6 properly.

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