[Marie33]

Hello Everyone I am a newbie,
Could anyone please tell me what you consider a safe amount of Vit B6. I have read over and over again on how too much Vit B6 can cause Neuropathy or symptoms of Neuropathy. But yet, B-100 as some peeps have mentioned has 100 mg of B6. Im wonderen if that is still considered "too high".
Also, Ive read there is no toxic limt for B12. When my neuropathy symptoms started, my B12 was not abnormal, but on the low side of range (384). My PCP said to take B12 vit. He retested my blood after 3 mos, it went up to 1280 with no symtom relief ( pins and needles in legs, arms and hands, and burning feet!) Doc said to stop taking the B12, that it was too high and out of range. Im wonderen if I should have kept taking the B12. I started taking R-lipoic Acid (100mg) and Acetyl L Carntine (250) one week ago. I also take Vit C (500) Mag, some Vit B's and Fish oils. Hoping to get some relief soon! Does anyone know how much Gamma linolenic acid (GLA) is safe for Neuropathy?.Should I take Vit B1 does anyone know if it will help? I want to take whatever It takes , but I dont want to bombard my system if they (vits) dont work or hurt myself in another way.
So far the Doctors dont know whats causing my Neuropathy. I am considered Prediabetic, GTT was 167 and A1C was 5.7. Doctors dont believe the "diabetes" caused my neuropathy! Go figure, They said my numbers were to low to cause "damage". I was having high BG (above 140) 1 hour post meal numbers that I believe may have caused some damage. My fastings are still within normal range.
So frustrating not having a real cause for all this pain and sufferen! any thoughts would be greatly appreciated. Thank you! Marie

[mrsD]

Welcome to NeuroTalk:

Several things:

1) ranges of B12 are rather meaningless in the upper areas.
Doctors are trained to heed ranges...but in this case it is rather useless. Most of us on Peripheral Neuropathy forum keep our B12 over 1000. There is a B12 thread in the stickies there, for you to study.

2) If your A1C is 5.7 which is very good for an older person, that means your tests only show the very beginning of glucose intolerance. This can be controlled with diet. No sugar or very little now and then, and control of white carbs, --with moderation. Small meals, and good snacks that won't impact glucose levels, and you should be okay. I suspect you did not have at 4-5hr test but a 2 hr? That type is less accurate.
You can get a glucometer and test at home under various conditions to see what is going on. But if you are under A1C of 6, that is not really a significant issue yet.

The B6 toxicity comes from really really high levels over many months and years.
Some people are more sensitive to B6 than others, but taking modest amounts should not be a problem. Some find that P5P is better tolerated. Jarrow makes a B-complex that is more tolerable than most= B-right. P5P is activated so the body does not have to do this task. B6 (pyridoxine) is not active...and many doctors and people don't know this.

This is my B6 informational thread:
http://neurotalk.psychcentral.com/thread30724.html

B6 toxicity does not cause tingling...it causes ataxia and difficulty walking. (gait disturbances).

You should consider methylcobalamin for your B12. Some people cannot convert B12 in vitamins to active MethylB12. This is a genetic error called MTHFR polymorphism.
I have a long but informative thread on the PN forum stickies..at the top of the first page. Your doctor will not do this for you...you have come here for help,....you have to do this yourself.

[Darlene]

Marie,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[Tetanus Toxoid]

One of my doctors told me too much of any B's could be potentially bad for the kidneys.

Then my "primary" told me bologna, it's water soluable (spelling lol) and whatever the body doesn't utilize it gets excreted in the form of waste.

[mrsD]

Originally Posted by Tetanus Toxoid

One of my doctors told me too much of any B's could be potentially bad for the kidneys.

Then my "primary" told me bologna, it's water soluable (spelling lol) and whatever the body doesn't utilize it gets excreted in the form of waste.

It is the rare doctor indeed you can trust today about nutritional testing, proper interpretation of same, and advice.

Most have little if any training in this subject. I have collected the best medical papers on these subjects and they are on threads at PN and Vitamin forum here.

You would be amazed at how many people come here with "normal" blood work, and in fact are very low in B12. The lab ranges are still reported in this country are far behind new medical treatments from 1999 on to today. The new acceptable B12 reading in US is 400pg/ml. NOT 180 or 200, or 300! But doctors will tell these low patients, that their tests were "normal". Go figure.

How many doctors know that Vit D is NOT a vitamin? It is a proto-hormone.

How many know that B12 is stored in the liver so when times get scant for food, we can rely on that for a while? We evolved this to survive famines.

How many know that pyridoxal (activated B6) is stored briefly in skeletal muscle?

How many know that folic acid is not the active form of folate?
(methylfolate is the active form).

How many know that cyanocobalamin is not active in the body until it is converted to methylcobalamin...which may fail due to genetic errors? How many doctors even know what methylcobalamin it and that is costs pennies a day to supplement orally OTC?

[Marie33]

mrsD; Welcome to NeuroTalk:

Several things:

1) ranges of B12 are rather meaningless in the upper areas.
Doctors are trained to heed ranges...but in this case it is rather useless. Most of us on Peripheral Neuropathy forum keep our B12 over 1000. There is a B12 thread in the stickies there, for you to study.

2) If your A1C is 5.7 which is very good for an older person, that means your tests only show the very beginning of glucose intolerance. This can be controlled with diet. No sugar or very little now and then, and control of white carbs, --with moderation. Small meals, and good snacks that won't impact glucose levels, and you should be okay. I suspect you did not have at 4-5hr test but a 2 hr? That type is less accurate.
You can get a glucometer and test at home under various conditions to see what is going on. But if you are under A1C of 6, that is not really a significant issue yet.

The B6 toxicity comes from really really high levels over many months and years.
Some people are more sensitive to B6 than others, but taking modest amounts should not be a problem. Some find that P5P is better tolerated. Jarrow makes a B-complex that is more tolerable than most= B-right. P5P is activated so the body does not have to do this task. B6 (pyridoxine) is not active...and many doctors and people don't know this.



B6 toxicity does not cause tingling...it causes ataxia and difficulty walking. (gait disturbances).

You should consider methylcobalamin for your B12. Some people cannot convert B12 in vitamins to active MethylB12. This is a genetic error called MTHFR polymorphism.
I have a long but informative thread on the PN forum stickies..at the top of the first page. Your doctor will not do this for you...you have come here for help,....you have to do this yourself.

Hello MrsD, Thank you for your response and support!
The last time my B12 was tested (3 mos ago) it was around 1,000. Do you think its safe or beneficial to continue taking it when my level is already high?
It was the 2 Hr GTT and it was out of range confirming Pre-diabetes along with my A1c at 5.7. What is it about the 4 or 5 hr test, is it more accurate? Should I mention this to my Endo? I do have a glucometer and been testing at home since I started having Neuropathy sypmtoms back in 3/2011. I have since changed my diet and cut back on carbs. My goal is to stay below 140 at 1 hr post meal and below 120 at 2 hrs. I was hoping to get some relief from my N symptoms since my BG numbers are much better. It seems there is no "cause" for me right now. The neurologist and endo do not know how to treat it and they tell me "nereves dont heal" I have to live with it!
I am glad to have found this forum, I have found alot of informative and nice friends like you and the rest of the people on here.
Is P5P B6? Do you know if B1 is helpful with PN? should I include it with my "meds" That is the only B I do not take. I am taking 100mgs R lipoic acid and 250 mgs Acetly L Carnitine, and some others that I mentioned in my last post. The 500 ALC may be to strong for me right now. I hope to get some results (relief) soon. Thank you for all your support!

[glenntaj]

--but as I'm here earlier this morning, I'll address of few of the questions:

First, a figure for B12 around 1000 is not high at all if you've been orally supplementing. Many of us here keep our B12 ranges in that area or higher. I've had readings as high as 1864. B12 has no known toxicity level and only rarely does a very high B12 level indicate something problematic, and not if it is easily explained by supplementing with between 1000-5000mcg/day. You may have to explain this to doctors, though, or see if you can get them to access some of the literature linked to in our B12 thread:

http://neurotalk.psychcentral.com/thread85103.html

Second--an hemoglobin A1C of 5.7 is just at the edges now of the new ranges for impaired glucose tolerance. That range used to be 6.0, but just like with the downward pressure from pharmaceutical companies regarding "healthy" levels of cholesterol, there's been pressure to think of "normal" glucose as lower and lower. Most of use, though, have some degree of glucose dysregulation as we age, due to insulin resistance (our tissue become less sensitive to the action of insulin to drive glucose into cells); the trick, especially if we have certain types of diabetes-favoring heredity, is to keep it from progressing to diabetes. Mrs. D's suggestion are sound. And, a longer glucose tolerance test--4-5 hour, with both glucose AND insulin level draws at baseline, .5, 1, 1.5, 2, 2.5, 3, 4 and 5 hours (admittedly, this is boring and you feel like a pincushion) is far better for noting the patterns of insulin rise and fall and how they match that of glucose rise and fall. Mine, for example, show the insulin resistance, in that my fasting insulin is relatively high and my body overproduces insulin after the drink to keep my blood sugar in check, to the extent that in the third-fourth hour it drives my blood sugar levels into the 60's-70's--a reactive hypoglycemia. This type of action would likely be missed with a shorter glucose tolerance test.

Still, there is considerable evidence now that neuropathy can occur with just impaired glucose tolerance rather than years of frank diabetes. Searching under my name here and "impaired glucose tolerance neuropathy" will bring you whole lists of literature I posted links to on the subject if you want.

And, P5P is the activated form of B6, which some people do need to take due to genetic errors in the chemical processes in converting vitamins to usable form--not unlike the need of some people to take the already methylated form of B12 (methylcobalamin). Some people who show high serum levels of B6 seems to be accumulating it due to the inability to convert. To my knowledge, those who have supplemented with P5P have often experienced a drop in B6 levels to normal ranges, and I know of nobody who has had neuropathy symptoms on P5P. It may well be that those who have neuropathy symptoms on high dose B6 (pyrodoxine intoxication--very rarely reported in any case) could not convert it.

Many people have reported some symptom relief with B1 supplementation, especially the fat-soluble form benfotiamine, which is now widely available.

[Marie33]

Originally Posted by glenntaj

--but as I'm here earlier this morning, I'll address of few of the questions:

First, a figure for B12 around 1000 is not high at all if you've been orally supplementing. Many of us here keep our B12 ranges in that area or higher. If had readings as highs as 1864. B12 has no known toxicity level and only rarely does a very high B12 level indicate something problematic, and not if it is easily explained by supplementing with between 1000-5000mcg/day. You may have to explain this to doctors, though, or see if you can get them to access some of the literature linked to in our B12 thread:

Second--an hemoglobin A1C of 5.7 is just at the edges now of the new ranges for impaired glucose tolerance. That range used to be 6.0, but just like with the downward pressure from pharmaceutical companies regarding "healthy" levels of cholesterol, there's been pressure to think of "normal" glucose as lower and lower. Most of use, though, have some degree of glucose dysregulation as we age, due to insulin resistance (our tissue become less sensitive to the action of insulin to drive glucose into cells); the trick, especially if we have certain types of diabetes-favoring heredity, is to keep it from progressing to diabetes. Mrs. D's suggestion are sound. And, a longer glucose tolerance test--4-5 hour, with both glucose AND insulin level draws at baseline, .5, 1, 1.5, 2, 2.5, 3, 4 and 5 hours (admittedly, this is boring and you feel like a pincushion) is far better for noting the patterns of insulin rise and fall and how they match that of glucose rise and fall. Mine, for example, show the insulin resistance, in that my fasting insulin is relatively high and my body overproduces insulin after the drink to keep my blood sugar in check, to the extent that in the third-fourth hour it drives my blood sugar levels into the 60's-70's--a reactive hypoglycemia. This type of action would likely be missed with a shorter glucose tolerance test.

Still, there is considerable evidence now that neuropathy can occur with just impaired glucose tolerance rather than years of frank diabetes. Searching under my name here and "impaired glucose tolerance neuropathy" will bring you whole lists of literature I posted links to on the subject if you want.

And, P5P is the activated form of B6, which some people do need to take due to genetic errors in the chemical processes in converting vitamins to usable form--not unlike the need of some people to take the already methylated form of B12 (methylcobalamin). Some people who show high serum levels of B6 seems to be accumulating it due to the inability to convert. To my knowledge, those who have supplemented with P5P have often experienced a drop in B6 levels to normal ranges, and I know of nobody who has had neuropathy symptoms on P5P. It may well be that those who have neuropathy symptoms on high dose B6 (pyrodoxine intoxication--very rarely reported in any case) could not convert it.

Many people have reported some symptom relief with B1 supplementation, especially the fat-soluble form benfotiamine, which is now widely available.

Thank you for your response! Quick question running out door.. Do you or Mrs D think it would be wise to start taking B1 Benfotiamine , add it to my "meds". Im already taking Rlipoic Acid 100, A Lcarnitine 250 (500 makes me jittery)would like to add B1 for nerve help, along with my B12, B6, C, , Mag, fish oil for my SFN. Im concerned 150 mg of B1 will be to much for I am senitive to most Meds and some Vits. B1 says it "boosts energy", Im concerned that added another Vit may make me feel worse. I have alot of nerve pain still and would like to try to get some relief ..what are your thoughts , I checked a few sites and it seems B1 (Benfotiamine) starts at 150, is this a safe place to start? Thank you so much...

[mrsD]

I have never had a side effect from benfotiamine. Have been taking it for about 4 yrs.

I started at 300mg a day for about a couple of months and then reduced to 150mg a day.

It is worth trying and is now affordable. I use Doctor's Best brand which is available now on Amazon for quite a discount.