Vitamins, Nutrients, Herbs and Supplements For discussion about vitamins, vitamin deficiency, herbal remedies and other supplements.


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Old 02-16-2009, 02:27 PM #1
gfgal gfgal is offline
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Smile b12 nerve damage

hello and best wishes to everyone i have not posted before and hope i do so in the appropriate manner, anyway 6 months ago i was told i had a b12 deficiency nerve dammage. levels were 163 18 months ago and i was commenced on hydroxycoblamin injections, later referred to neurologist for increasing parasthaesia and burning in feet and hands. can b12 deficiency nerve dammage/symptoms spread and worsen whilst on therapy?
i am coeliac and was diagnosed 2 1/2 years ago b12 than was 216 ferretin 3
thankyou
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Old 02-17-2009, 07:07 AM #2
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I certainly am not an authority on B12, but I was B12 deficient too, and celiac. Has your ferritin been tested again? 3 is way too low, they say to aim for 50, and I thought mine is low at 26. B12 at 216 is too low, 163 is definitely too low. I take 5000mcg of B12 now, was on 3000mcg when I was tested in July, and my level came back at 1015. Are you still doing the shots? I am positive we will have to take B12 for the rest of our lives just to keep the level steady.
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Old 02-17-2009, 07:25 AM #3
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Default b12 again

hello thanks for reply. 12 months ago b12 710, ferretin 11- took iron for 3 months and still on b12 shots and have been takin sublingual b12. trying to get exact results from 6 months ago from neurologist has proved impossible even gp has no exact numbers his report just says results within normal limits. next neurology appt has been delayed from march to june 09. means taking gabapentin for another 3 months without really discussing it.
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Old 02-17-2009, 08:58 AM #4
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Originally Posted by gfgal View Post
hello thanks for reply. 12 months ago b12 710, ferretin 11- took iron for 3 months and still on b12 shots and have been takin sublingual b12. trying to get exact results from 6 months ago from neurologist has proved impossible even gp has no exact numbers his report just says results within normal limits. next neurology appt has been delayed from march to june 09. means taking gabapentin for another 3 months without really discussing it.
You really need those numbers! Doctors call normal anything above 250, which is still too low. To heal you should be at least at 1000 or so.

Also you need the other B-complex vitamins, and some magnesium, and a test for Vit D levels.

Many nutrients are affected by Celiac, not just B12.
You could be low in B6, folate, riboflavin etc as well.

To repair nerves the body uses B6, folate, B12, essential fatty acids in the Omega-3 family plus methyl donor foods (root veggies like beets). Omega-3's are metabolized by magnesium and B6, and B6 is activated in the body by riboflavin B2.

It gets pretty complicated when you malabsorb nutrients.
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Old 02-17-2009, 11:34 AM #5
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That iron number is still just too low. It needs to be between 50 and 70.

Iron deficiency can also cause burning and tingling neuropathy like symptoms.

I have an iron deficiency and had problems getting any results from the over the counter iron supplements.

There is a good prescription iron med out there called repliva that has helped me significantly. Please ask your doc for it.

Here is a post I made on iron deficiency. Its about half way down the thread.

http://neurotalk.psychcentral.com/sh...ron+deficiency
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Old 02-17-2009, 11:44 AM #6
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Thanks for your replies. I am making myself a to do/buy list and will be sorting myself out over the next week!
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Old 02-17-2009, 10:17 PM #7
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Hello gfgal !!!

I can say since taking my B complex pills (B1, B2, B6, B12), my neuropathy, pains, burning feet and hands feel waaaaay much better !
The B complex works as good as my lyrica So, Im sure once you increase your B levels, you will feel better.

Good luck !
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Old 02-20-2009, 07:58 PM #8
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I'm not sure but in japan i think the b12 levels for malabsorbancy are under 300. and also there's a lab which you can get blood tests done, if you're doctor doesn't use them. its called directlabs.
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Old 02-24-2009, 06:14 PM #9
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Quote:
Originally Posted by gfgal View Post
hello and best wishes to everyone i have not posted before and hope i do so in the appropriate manner, anyway 6 months ago i was told i had a b12 deficiency nerve dammage. levels were 163 18 months ago and i was commenced on hydroxycoblamin injections, later referred to neurologist for increasing parasthaesia and burning in feet and hands. can b12 deficiency nerve dammage/symptoms spread and worsen whilst on therapy?
i am coeliac and was diagnosed 2 1/2 years ago b12 than was 216 ferretin 3
thankyou
Good luck. am just beginning my own journey with a B12 level of 68!! have every symptom listed. the neuros and mds i've been to don't seem to know squat about this condition or vitamins in general. Just found out i've been taking the wrong kind of B12 for my first two weeks. Doc just said, "go to Xmart and buy something cheap. 1000 mg. brand doesn't matter. HA! Also can't believe this has obviously been going on for many many years undetected even tho i have blood work done annually. Anyway just wanted to say, hey! and wish you success on your journey. nancys pearl girl
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Old 06-28-2011, 09:42 AM #10
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Hello I am Mavin
I have been diagnosed with Hashimotos (August 2010) and b12 Deficiency (about the first week of May 2011) In 2002 I had L-4, L-5, S-1 Fusion with stabilization bars surgery. In July of 1993 I shattered C-7 (I am lucky I walked to the car and came out of it with only some numbness in left thigh and a plate in the front)
My first b12 level was 241 after a week of daily and then once a week for four weeks then I was to go to monthly. After the second week I noticed my body not digesting food again my hair falling out again some fatigue but the burning oh man the burning! It wasnt too bad for a few more days but I called anyway to my P.A. I wanted a shot! We did levels again and I was at 307 so they are making me wait. Today for the past three days the burning and pain has taken over again! Its so bad at night. I was feeling so normal and the burning was gone! My physicians assistant care taker says they want to bring my levels up slow.
I want to make an appointment to understand what can help at home. However my understanding is that serum levels can be deceiving and IF I was to get a shot and it helps it is needed and my body just needs it on a different schedule or a slower back of off with the nerve issue if we dont stop it this will be permanent and oh man no way...
Thought? Comments? Help?
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