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Old 04-04-2016, 11:00 AM #1
LisaAnnB LisaAnnB is offline
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Originally Posted by SuperCramp View Post
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.
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Old 04-04-2016, 12:14 PM #2
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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.
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Old 04-04-2016, 07:46 PM #3
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Oh yes....The phantom rock in the shoe thing. I know it well.
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Old 04-05-2016, 05:02 PM #4
LisaAnnB LisaAnnB is offline
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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.
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Old 04-05-2016, 05:35 PM #5
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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
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Old 04-06-2016, 01:39 PM #6
LisaAnnB LisaAnnB is offline
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Originally Posted by Rancar View Post
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.
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Old 05-04-2016, 06:03 PM #7
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Quote:
Originally Posted by Rancar View Post
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.
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Old 05-04-2016, 09:25 PM #8
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Quote:
Originally Posted by Marie33 View Post
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.
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Old 05-05-2016, 07:08 AM #9
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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.
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