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-   -   Toxic nerve damage (https://www.neurotalk.org/peripheral-neuropathy/233137-toxic-nerve-damage.html)

SuperCramp 02-29-2016 05:48 PM

Toxic nerve damage
 
Those of you who have widespread nerve symptoms and no diagnosis should perhaps get a vitamin B6 blood test.

I got widespread nerve damage from the B6 megadoses that are included in many health supplements.

From my experience, and reading about other B6ers experiences elsewhere, this is a problem flying under the radar. Even neurologists don't seem to understand it, as it takes some patients years to get a diagnosis. I was lucky to eventually see a senior neuro who was onto it right away.

In my case symptoms extended from paresthesias, electric shocks, tingling and buzzing to cramps, twitching and difficulty walking. I even had a couple of scary but temporary pressure palsies.

I also had feelings like there was a rock in my shoe, bee stings, and sometimes difficulty breathing when lying down.

My symptoms went away very slowly after stopping all B6 supplements. After three years I am now 80% to 90% recovered.

I took the B6 supplements after getting muscle damage in my feet from taking a statins at 20mg a day. The muscle damage came on very slowly over two years and became very painful. I had hoped the health supplements would help me heal, but instead I just got the added nerve symptoms.

I found the best healer is sleep, I took melatonin and a tiny dose of amitriptyline before going to bed. Edible cannabis before bed also helps with sleep greatly (if legal in your area).

You don't have to be taking supplements to get B6 toxicity, some people have a presumably genetic enzymopathy that causes B6 to build up.

Would love to hear back if any of you with PN find your B6 levels sky high.

kiwi33 02-29-2016 07:02 PM

Excess intake of Vitamin B6 is known to cause sensory neuropathy.

Its Recommended Dietary Allowance (RDA) is between 1-2 mg/day for adults.

Its Tolerable Upper Intake Level is 100 mg/day for adults.

See http://lpi.oregonstate.edu/mic/vitamins/vitamin-B6 for more on this.

Neuroproblem 03-01-2016 03:51 AM

Quote:

Originally Posted by SuperCramp (Post 1201909)
Those of you who have widespread nerve symptoms and no diagnosis should perhaps get a vitamin B6 blood test.

I got widespread nerve damage from the B6 megadoses that are included in many health supplements.

From my experience, and reading about other B6ers experiences elsewhere, this is a problem flying under the radar. Even neurologists don't seem to understand it, as it takes some patients years to get a diagnosis. I was lucky to eventually see a senior neuro who was onto it right away.

In my case symptoms extended from paresthesias, electric shocks, tingling and buzzing to cramps, twitching and difficulty walking. I even had a couple of scary but temporary pressure palsies.

I also had feelings like there was a rock in my shoe, bee stings, and sometimes difficulty breathing when lying down.

My symptoms went away very slowly after stopping all B6 supplements. After three years I am now 80% to 90% recovered.

I took the B6 supplements after getting muscle damage in my feet from taking a statins at 20mg a day. The muscle damage came on very slowly over two years and became very painful. I had hoped the health supplements would help me heal, but instead I just got the added nerve symptoms.

I found the best healer is sleep, I took melatonin and a tiny dose of amitriptyline before going to bed. Edible cannabis before bed also helps with sleep greatly (if legal in your area).

You don't have to be taking supplements to get B6 toxicity, some people have a presumably genetic enzymopathy that causes B6 to build up.

Would love to hear back if any of you with PN find your B6 levels sky high.

It wasnt a good choice taking b6, unless you were deficient in the first place. B6 toxicity causes PN in people. People often take megadoses of vitamins when they have no deficiency present, it also exacerbated by the fitness trend and hype nowadays, or people think it gives them a boost, however your body most likely eliminates any excess vitamins from the diet anyways.

SuperCramp 03-02-2016 01:59 AM

The problem is that B6 is hidden in many pills. The Blackmores Magnesium pills I was taking carried 50 units of B6, the Swisse Zinc pills 25 units, the Blackmores Mega B another megadose of B6, and so on ...

I think some energy drinks have it too.

The daily B6 requirement is tiny, yet people take these huge doses, many unknowingly.

The link listed by Kiwi33 is excellent, but be aware that people are reporting B6 neuropathy and high blood B6 levels on lower doses than are generally regarded as dangerous in the literature.

As well as genetic processing issues (enzymopathies) I suspect some people have genetic weakness is their nerves, which makes them vulnerable to toxic assault.

Neuroproblem 03-02-2016 03:59 AM

Quote:

Originally Posted by SuperCramp (Post 1202156)
The problem is that B6 is hidden in many pills. The Blackmores Magnesium pills I was taking carried 50 units of B6, the Swisse Zinc pills 25 units, the Blackmores Mega B another megadose of B6, and so on ...

I think some energy drinks have it too.

The daily B6 requirement is tiny, yet people take these huge doses, many unknowingly.

The link listed by Kiwi33 is excellent, but be aware that people are reporting B6 neuropathy and high blood B6 levels on lower doses than are generally regarded as dangerous in the literature.

As well as genetic processing issues (enzymopathies) I suspect some people have genetic weakness is their nerves, which makes them vulnerable to toxic assault.

yes, but it usually indicated on the nutrition facts, area. People consume it because, they believe it will boost them when they are working out or exercising, even if they have regular levels in thier body, assuming they dont have any undrerlying disorder. vitamins also carry a risk of containing other stuff in there, since they are not regulated.

LisaAnnB 04-04-2016 11:00 AM

Quote:

Originally Posted by SuperCramp (Post 1201909)
Those of you who have widespread nerve symptoms and no diagnosis should perhaps get a vitamin B6 blood test.

I got widespread nerve damage from the B6 megadoses that are included in many health supplements.

From my experience, and reading about other B6ers experiences elsewhere, this is a problem flying under the radar. Even neurologists don't seem to understand it, as it takes some patients years to get a diagnosis. I was lucky to eventually see a senior neuro who was onto it right away.

In my case symptoms extended from paresthesias, electric shocks, tingling and buzzing to cramps, twitching and difficulty walking. I even had a couple of scary but temporary pressure palsies.

I also had feelings like there was a rock in my shoe, bee stings, and sometimes difficulty breathing when lying down.

My symptoms went away very slowly after stopping all B6 supplements. After three years I am now 80% to 90% recovered.

I took the B6 supplements after getting muscle damage in my feet from taking a statins at 20mg a day. The muscle damage came on very slowly over two years and became very painful. I had hoped the health supplements would help me heal, but instead I just got the added nerve symptoms.

I found the best healer is sleep, I took melatonin and a tiny dose of amitriptyline before going to bed. Edible cannabis before bed also helps with sleep greatly (if legal in your area).

You don't have to be taking supplements to get B6 toxicity, some people have a presumably genetic enzymopathy that causes B6 to build up.

Would love to hear back if any of you with PN find your B6 levels sky high.

It's encouraging to know that you improved. I have been off supplements for a long time and haven't noticed much improvement since the toxicity. I only took it for short periods of time, but did not know that was the reason for the nerve issues for a while.

heb1212 04-04-2016 12:14 PM

Quote:

Originally Posted by LisaAnnB (Post 1206959)
It's encouraging to know that you improved. I have been off supplements for a long time and haven't noticed much improvement since the toxicity. I only took it for short periods of time, but did not know that was the reason for the nerve issues for a while.

Hi All... On the other hand, my B6 is quite low with a recommendation from my neuro for supplementation. I researched it and linked it potentially to the gabapentin use. There was no helpful advice on my doctor's end.

Zatochi 04-04-2016 07:46 PM

Oh yes....The phantom rock in the shoe thing. I know it well. :)

LisaAnnB 04-05-2016 05:02 PM

Quote:

Originally Posted by heb1212 (Post 1206965)
Hi All... On the other hand, my B6 is quite low with a recommendation from my neuro for supplementation. I researched it and linked it potentially to the gabapentin use. There was no helpful advice on my doctor's end.

Eat avocados. Thy are super high in b6. High enough people actually get toxic off of them. I would not take a supplement if I were you.

Rancar 04-05-2016 05:35 PM

Is the B6 Plasma test the right one to take? Mine shows me right in the middle:

Component
VITAMIN B6,PLASMA

Your Value
19.9 ug/L

Standard Range
5.3 - 46.7 ug/L

LisaAnnB 04-06-2016 01:39 PM

Quote:

Originally Posted by Rancar (Post 1207129)
Is the B6 Plasma test the right one to take? Mine shows me right in the middle:

Component
VITAMIN B6,PLASMA

Your Value
19.9 ug/L

Standard Range
5.3 - 46.7 ug/L

Yeah, that is normal, but b6 levels go back to normal about 2 weeks after you stopped taking the vitamin or supplement, so it can seem normal even if b6 was the cause. The bigger question is if you were taking b6 when it happened or right before, that's if you were ever supplementing with it.

Itneverends 04-13-2016 07:14 PM

synthetic b6 and the lack of information to the public
 
Happened to me too. My doctor put me on it yrs ago...25-50mg in a b complex. Many docs since...no one stopped it. Now burning everywhere. Healing will take time. EMG normal, no small fiber neuropathy, no autoimmune damage. Did hurt some teeth being severely dehydrated. Hope you heal.

Itneverends 04-25-2016 12:39 PM

sfn
 
I was negative for sfn. My B6 levels were 74. I'm recovering. Shocking and disturbing....all of this!!!! Such betrayal by science. I was taking 25-50 mg....per a doctor.....well below USA upper standards but well above Europe. Time for some studies!!

Summerfun 04-27-2016 07:26 PM

B6 and lack of education
 
Happened to me too but I had already been diagnosed with idiopathic NLD SFN. Ten months after I was diagnosed I sought out a LLMD because I learned Lyme could cause it. My 2nd Elisa came back negative but my Western Blot IgM was positive. My LLMD started me on B6 + B Complex as well as antibiotics. Who puts a person on B6 who already has neuropathy without testing their level first? I was on 250mg daily for one year when I learned it could cause SFN and asked to have my level tested. She thought it was really unnecessary as it is a water soluble vitamin and "doesn't build up in your system". Wrong....my level came back as 53 with normal at 21 for the max. So if the Lyme did cause my SFN any chance of regeneration after antibiotics was eradicated by the toxic B6. More education is needed!:(. I see my neurologist next Tuesday and he is going to be mad!

Marie33 05-04-2016 06:03 PM

Quote:

Originally Posted by Rancar (Post 1207129)
Is the B6 Plasma test the right one to take? Mine shows me right in the middle:

Component
VITAMIN B6,PLASMA

Your Value
19.9 ug/L

Standard Range
5.3 - 46.7 ug/L

Hi I suffer with small fiber sensory neuropathy. I eat alot of avocados to stay healthy. My last B6 level was 17. Now I am concerned because I didn't know avocado is "Very high in B6". Should I cut back or cut them out of my diet?
The Standard range is 5.3-46.7. Two years ago my B6 was 43 and my neurologist said it was to high. Is the standard range you mention accurate?
Any suggestions would be greatly appreciated.

Summerfun 05-04-2016 09:25 PM

Quote:

Originally Posted by Marie33 (Post 1210291)
Hi I suffer with small fiber sensory neuropathy. I eat alot of avocados to stay healthy. My last B6 level was 17. Now I am concerned because I didn't know avocado is "Very high in B6". Should I cut back or cut them out of my diet?
The Standard range is 5.3-46.7. Two years ago my B6 was 43 and my neurologist said it was to high. Is the standard range you mention accurate?
Any suggestions would be greatly appreciated.

My labs were done at Quest and their range for normal B6 is 2.1-21.7. I hope that helps.

Summerfun 05-05-2016 07:08 AM

b6
 
Quote:

Originally Posted by Summerfun (Post 1210319)
My labs were done at Quest and their range for normal B6 is 2.1-21.7. I hope that helps.

Just had my B6 rechecked at MGH and their range is 5-50 so it really depends on the lab. :confused:

stillHoping 05-05-2016 07:13 AM

Quote:

Originally Posted by Summerfun (Post 1210346)
Just had my B6 rechecked at MGH and their range is 5-50 so it really depends on the lab. :confused:

Are they using the same measuring units ?

mrsD 05-05-2016 07:33 AM

labs vary in their ranges. It has to do with which machines they use, and how they calibrate them.

more here:
http://articles.chicagotribune.com/2...-range-glucose


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