High levels of B6 and B 12 in blood tests and going up

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Hope4Me

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Joined
Dec 23, 2014
Messages
33
Reason
PALS
Diagnosis
11/2014
Country
US
State
AZ
City
Tucson
Hello all,
I'm going to try another post here. Some my posts have not gone through so maybe I'm hitting the wrong button. Anyhoo,

Other than really tight calves upon walking fast for exercise and being pretty tired after work, my more telling symptoms began last May 2014. Around that time, routine blold work showed by B6 level exceeded the high range. My go told me to cut out additional supplements that contained b6 so I did.

Later in the summer I started a diet:confused:(did know my diagnosis or wouldn't have dieted) and vitamin I took had a very low does of b 12 and b6. I took only for 4 myths and then we off of those.

In October I had another blood test and this time the b6 was 5 times higher than the high range and the b12 was now elevated. I have been very careful about my intake since. However, another test last week showed now 7 times higher than the high range and b 12 is still going up. No doctor addresses this except to say they don't understand what's going on.

I know that really high b6 can cause peripheral neuropathy and permanent damage.

Has anyone experienced this or know any association with these levels and ALS?

Sorry for the long post.

Hope4Me
 
Sorry to hear this. What does your endocrinologist say? I think some medicines ( not riluzole )can affect this. If you take others make sure they consider this
 
You have made more than 14 posts? If a mod deletes a post they would let you know.

May I just ask you to fix your user profile as it says you were diagnosed November of this year and that's rather confusing.

No idea about the B vitamins I'm afraid, maybe someone else, have you done a search here on the forum to see if it's been discussed before?
 
Thx for your replies ladies.
I have found one other post regarding high b6 but wondered if it widespread in the ALS community.

I will review and update my profile. I think some of my posts may have been done as a visitor.

Thanks again,
Hope4Me
 
Hope you can't make posts here unless you are a member.
Maybe some of your posts went to moderation but you didn't realise when they were passed and came through. In your CP you can review all the posts you have made.

I haven't heard of high B vitamin levels in association with ALS. I've only known PALS to take extra B supplements to attempt to combat progression.

Stephen Hawking has been given weekly methylcobalamin injections for like 30 or 40 years for example. No one knows if it has helped him as he is a bit of an anomaly anyway.
 
arrrgghhhh like my post just went to mod ... sorry Nikki you have enough workload without me saying something that triggered it
 
Steves b vitamins were checked during his workup. Also vitamin d. Everytghing was low or low normal. That was their concern so he takes supplements for both. I have often felt this is a strange metabolic disease.....
 
Sorry nikki....mine went too
 
I suspect gooseberry that we both used a word in common ... su pp le me nt just sayin
 
Yes. We did Tillie! :)
 
Yes. We did Tillie! :)

when mine went to mod I checked what I had written (you can hit back on your browser and get back to your text again) and that was the only word I could see that may have been suspect.

then when yours came out of mod it jumped out at me.

now I have to see if I can remember not to use it again ... :lol:
 
I don't think that was it Tillie. I can't figure it out though
 
mmm you seem to be right!
 
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