Aloha. I have been taking 5000 each morning of the Methyl B-12. To say it kicked my PN's butt is putting it mildly, but what i really noticed is that I am able to take care of my 67 year old disabled husband (who just got home from almost a month of being in hospitals and nursing homes due to getting his blood pressure under control and not fainting anymore (which we have accomplished).

I make all appointments, I get after him to do his exercises. I go up and down stairs (and I have bad knees) and my memory is sharper than when I was in my teens.

I attribute this all to Methyl B-12. Yesterday (which was his last day in the nursing rehab facility), I gathered all the residents around the computer in the Day Room and I put on videos from youtube that I knew they had never seen in their life. I had them hear Alexander Graham Bell's Voice (that's up on youtube). One of the people wanted to see the Magruder Film on JFK. I brought that up. The best was when I brought up an old I've got a secret show from the late 50's and there was a 96 year old guest whose secret was "I saw John Wilkes Booth shoot Abraham Lincoln". You should have seen the faces on those ladies. They are all in their 80's. I taught some how to use the mouse and bring up youtube. Just simple stuff.

I left them watching Liberace and Frank Sinatra videos. They were just amazed. And I can still type 146 words a minute (even with arthritis).

I am convinced that if I didn't take 5000 of Methyl B-12 I could NEVER do what I do, (especially take care of my husband who has had Peripheral Neuropathy (idiopathic) for almost 25 years.

So in my case, Methyl B-12 was a life saver with absolutely no ill effects or side effects. In all honesty, I also grow my own food in my kitchen (I'm a sprouter, look that up and you'll see what I eat). It's really cool

Take care, Melody

[QUOTE=Malia;1136946]I've really got to read more on this thread Mrs. D. I was reading one can OD on the B's and I may just be one. I take the Benfothiamine and the Jarrow B complex and then a spritz of B-12 a couple of times a day... but I must say that my PN is feeling better than in years. I really hope for some healing of the nerves in my lower legs and feet... course I don't let that stop me... I am a real work horse but am getting older and have to be more careful of my gallop. :) I was tested awhile ago...(years) May be a good time to do it again...Any personal experience of taking too much B's?
Hi Mailia
Glad to hear the B's are helping with your pain! How much Bentofamine (B1) and B12 do you take? I also have a normal-high B12 level. my last blood test (4 wks ago) was 1050. PPC said it was too high ,but I still Supplement with 1000 mcg Methylcobalamin a day. Is there any B6 in your Jarrow B Complex? As Mrs D stated , B6 is not good for everyone. I was told to stay away from the B6 because of my SFN. I still get bad pain and burning in my lower legs and feet. I take 300 Lyrica , its not working. Was thinking about increasing my B's again without the B6. What can of Neuropathy do you have and do you have a cause for your pain. Do you take any meds with your B's?
I hope you continue to "heal"..:hug:

[QUOTE=MelodyL;1137018]Aloha. I have been taking 5000 each morning of the Methyl B-12. To say it kicked my PN's butt is putting it mildly, but what i really noticed is that I am able to take care of my 67 year old disabled husband (who just got home from almost a month of being in hospitals and nursing homes due to getting his blood pressure under control and not fainting anymore (which we have accomplished).

I make all appointments, I get after him to do his exercises. I go up and down stairs (and I have bad knees) and my memory is sharper than when I was in my teens.

I attribute this all to Methyl B-12. Yesterday (which was his last day in the nursing rehab facility), I gathered all the residents around the computer in the Day Room and I put on videos from youtube that I knew they had never seen in their life. I had them hear Alexander Graham Bell's Voice (that's up on youtube). One of the people wanted to see the Magruder Film on JFK. I brought that up. The best was when I brought up an old I've got a secret show from the late 50's and there was a 96 year old guest whose secret was "I saw John Wilkes Booth shoot Abraham Lincoln". You should have seen the faces on those ladies. They are all in their 80's. I taught some how to use the mouse and bring up youtube. Just simple stuff.

I left them watching Liberace and Frank Sinatra videos. They were just amazed. And I can still type 146 words a minute (even with arthritis).

I am convinced that if I didn't take 5000 of Methyl B-12 I could NEVER do what I do, (especially take care of my husband who has had Peripheral Neuropathy (idiopathic) for almost 25 years.

So in my case, Methyl B-12 was a life saver with absolutely no ill effects or side effects. In all honesty, I also grow my own food in my kitchen (I'm a sprouter, look that up and you'll see what I eat). It's really cool

Take care, Melody

Aloha to you!
That is wonderful news Melody. Glad to hear you and your husband have greatly improved. I also suffer from I-SFN. I take 1000 mcg of Meth-B12 for over one year now. (My lab B12 is around 1050). I'm nervous to go any higher on the B12, all my Docs say my B12 is "too high". I want to try 5000 to see if it helps the pins and needles and burning pain in my legs and feet. Not sure what to do..would appreciate any thoughts. Thank you

Marie--
 

--if you're supplementing with 1000mcg per day of B12 consistently, I'm not surprised that your B12 level is at that number; that just means you're putting a good deal of B12 into your system, where hopefully it can be utilized.

Under those circumstances, I don't think that level is too high. I've had blood draws with much higher B12 levels--one time 1864, believe it or not. I have to explain to the doctors that I supplement consistently.

This is a reminder -- glenntaj is correct.

The ranges for vitamins reflect generalized "normals" who were chosen and NOT taking any supplements.

High range B12 is desirable because getting it into the central nervous system is by passive diffusion from high to low. The lower the blood level the less gets into the CNS.

Doctors are so used to ranges in blood tests indicating disease, they think high B12 is dangerous. But there is no upper limit to B12 use...so don't worry about it.

The only concern is for the rare person with polycythemia vera... this is a rare disease of the bone marrow where too many red cells are formed. This would show up in a normal CBC screening test.

[QUOTE=Marie33;1137023] You know I really got to sit down and write the amounts down cause I don't know... first I hear about the B6. I have the Methal B's but they are sublingual and they just don't desolve and made me mad. don't know if I can just take it down. I do the liquid B's spray bottle. I really want to up my B;s but had concerns... My PN came from compression... I worked banquets and wore those horrible tight shoes all over the place, including the beach and when done my feet were screaming and I would soak in ice water... do that over and over and it killed the nerves...mylin sheath. sad. I have no Rx's on board... I hit all the numbers and don't trust them cause of the side effects ...

Another question I had... what about taking B's at bedtime? I was doing it but have recently stopped. didn't want to interfere with my sleep...

Taking high dose B complex will stimulate urine production
And interfere with sleep. Also some people get energized
With B complex.. So it is best to take it inth morning.

That's what I thought... thanks for the confirm Mrs D. Aloha :)

Increasing Methyl-B12
 

[QUOTE=mrsD;1137220]This is a reminder -- glenntaj is correct.

The ranges for vitamins reflect generalized "normals" who were chosen and NOT taking any supplements.

High range B12 is desirable because getting it into the central nervous system is by passive diffusion from high to low. The lower the blood level the less gets into the CNS.

Doctors are so used to ranges in blood tests indicating disease, they think high B12 is dangerous. But there is no upper limit to B12 use...so don't worry about it.

The only concern is for the rare person with polycythemia vera... this is a rare disease of the bone marrow where too many red cells are formed. This would show up in a normal CBC screening test.

Thank you MrsD and Glenn..
I am still supplementing with B12 even though my Level is good (high)! Do you think in your educated opinion(s), it makes sense to increase my Meth-B12 to 5000 mcg? I cant help but wonder if a higher dose of B12 (like Melody) along with B1 and Folate (800mcg) could help with the pins and needles and burning in my legs and feet (?)...

B1 can be helpful. In the old days, Thiamine was a treatment given by doctors for people with neuropathy. I think it is worth a try. If you take folate, do the methylfolate type, just in case you have that MTHFR genetic mutation that control methylation.

If you have a level of B12 using methyl form at 1000 or more you don't need to increase your B12. 1mg a day should be enough.
But if you tested and did not stop taking it before the test, your levels may be artificially elevated, and inaccurate.

[QUOTE=mrsD;1137569]B1 can be helpful. In the old days, Thiamine was a treatment given by doctors for people with neuropathy. I think it is worth a try. If you take folate, do the methylfolate type, just in case you have that MTHFR genetic mutation that control methylation.

If you have a level of B12 using methyl form at 1000 or more you don't need to increase your B12. 1mg a day should be enough.
But if you tested and did not stop taking it before the test, your levels may be artificially elevated, and inaccurate.

MrsD
My B12 level is around 1050. Ok, then I will stay at 1000 a day. I thought I should go higher since Melody says shes doing great at 5000 a day.

My Folate is: Solgar Folate ,800mcg, (as Metafolin). Is this OK? or should I try to get methylfolate? Also, how much B1 is a "safe" amount. Im getting ready to order more. How much should I be taking a day. Just so you know, aside from this SFN :mad:, I am otherwise healthy.

Thank you so much for your Response.

[QUOTE=Marie33;1137572]The Solgar is fine...it is methylfolate.

300mg of regular thiamine a day in divided doses. Or Benfotiamine 150mg-300mg a day.

When you go higher with B12, you do not get that much increase in absorption. At 1000mcg a day you absorb about 13mcg of that if on an empty stomach. You might get 20mcg a day at 5000... Some people choose to use more. That is their choice. In the beginning it would give faster results if you were really low, but once at a good level, the excess will be excreted by the kidneys.

That good to know.... and I do know that it has improved my PN. I just bought some gummies to pop during the day too... so a spritz here and a pop there plus my Jarrow B's/Benfo with my morning smoothie... I am a happy girl :) Thanks...

on B12 and other methyl issues
 

Thank you so much for the above information on B12. I really appreciate your informed discussion I had no idea I should be taking my methyl B12 away from food for instance. I will do so from now on. Now wonder it never has seemed to make a difference whether I took it or not. I agree the methyl form is best--and why not take it rather than not? Meanwhile I have a problem taking methyl folate or at least so I think. Maybe if I take it by itself rather than in a methyl B pill it will be OK. Wiped me out for two days the two times I took it. Pretty scary! I could hardly move I felt so under it. My grandmother used to get B 12 shots and swore by them. My condition seems to be more complicated. I had 23 and me done and discovered yes I do have inherited B12 tendency towards deficiency as well as multiple methyl and immune system difficulties--including a tendency to have low blood pressure with runaway inflammation from stress from ACE and other mutations which often leads to migraines etc. etc. But that is another topic, eh? Or is it? Things could get a bit confused here. I am new to the forum so will need to find my way...

Welcome Yolo. :Wave-Hello:

[QUOTE=Marie33;1137568]

Hi there. I now have Alan taking the same Methyl B-12 that I do. He needs to ramp up his energy. This will take time but I don't see any ill effects.

I have had doctors pooh pooh my taking Methyl B-12 and then ask me quietly later 'Melody, I have neuropathy, can you tell me about that B-12 again". These are DOCTORS who are supposed to KNOW. Yeah, they know Pills and Drugs, not what supplements can help people with PN.

It amazes me sometimes.

Why not try the 5000 for awhile?. I knew right away that this is the amount that would help me.

And get ready if you share this with your doctor. He'll say you are crazy and what the h are you doing? Thank god, my primary care guy is a bodybuilding physician who knows all about my Methyl B-12 and my sprouts. I just brought him a ziplock bag of my sprouts into his office during Alan's appointment on Friday. He took one look and said "Oh my sister will put this in my salad tonight. I love these things".

So some doctors know good stuff and some doctors don't know a darn thing about anything.

We have had specialists come to our neuropathy meetings just to learn from US.

And while Alan was in the hospital (you are going to LOVE this) a doctor waltzed in, told Alan he was a neuropathy specialist and told Alan 'you have diabetic neuropathy". Alan said "Sir, with all due respect I have had neuropathy for over 20 years and I'm a diabetic only 3 years" I was tested all those years with glucose tolerance tests and every test known to man, I did NOT get PN because I was diabetic"

What was the doctor's response to Alan: "you don't know what you are talking about, OF COURSE YOU WERE DIABETIC"

See what I mean?

Some of them are clueless and don't know what they are talking about.

Melody

Trying B12 to solve numbness in arms and hands
 

Hi there. This is my first post in this forum, which I came across while researching B12...which I came across while searching for answers regarding "numb arms at night." It has been a most informative read, and I thank MrsD for her knowledge shared here, and others who have contributed their experiences here which have spurred the information sharing.

I first recall experiencing the arm numbness about eight years ago, being woken by the irritation during the night for a few nights. It has come and gone since then, but usually only a night here and there.

However, a few weeks ago it began hitting me for successive nights, waking me several times a night, and leaving me unable to get relief for any duration of time. The numbness lingers in the morning and is apparent when I am sedentary.

I started with 1000mcg cyano about two weeks ago, before finding this forum. It didn't make any noticeable difference.

After reading this thread about four days ago, I started taking 2000mcg and I also took on empty stomach. I feel that made some kind of impact. I felt a day of low energy due to what *might* be related to the supposed potassium and iron stores being drawn upon for red blood cell production, as I read here and on Rose's site.

Two days ago I bought 5000mcg methyl lozenges and started those. ...And these last two nights I have not been woken by this issue...though it is certainly still present.

...I hope this is a true positive response to the B12 and that things continue to improve.

I wonder if I might not see other benefits over time as well. ...I have suffered from mood swings my entire adult life--monthly cycle related mostly, and a depressive temperament in general.

In the past, I used to donate blood (I'm talking in my late 20's...I'm 43 now), but I eventually stopped, as I was so often rejected for low hemoglobin levels. So, I think this B12 thing has big potential for my health.

I eventually might add some other supplements that have been mentioned here in relation to this issue.

Thanks again for such great information.

Welcome KC. :Wave-Hello:

Thanks, Kitt.

Well, as I half expected, symptoms are getting worse. I will for now assume that is part of the program...things getting worse before they get better, as Rose suggested on her "Repair/recovery" page:

Last night was periods of burning and pressure in forearm and hand, in addition to pins and needles and numbness. Also a moment of deep pain in left forearm. Action is much more in left than right arm.

Also seem to be much hungrier since going to 5000 mcg methyl. I bought ground meat for first time in long time and have made a few burgers.

More on MTHFR mutations:
 

This is a pretty good readable link about MTHFR...

http://doccarnahan.blogspot.com/2013...-big-deal.html

Eligen 12: RX only
 

Here is an update with a press release about this product which I posted about in the past when it was still in the pipeline.

http://www.emisphere.com/eligen_b12.html

It is disappointing to me because it is cyano form, and an expensive RX product. People with the MTHFR mutations do not do well on cyanocobalamin products or injections. They need the methylcobalamin which is the active form biologically.

Methylcobalamin can be absorbed by those with damaged or little intrinsic factor. It is passively absorbed in the small intestine, and requires no food to be present. It is meant to be taken daily, and only costs pennies a day and is OTC (over the counter).

The work done by Emisphere on the dosage form however, may be useful in the future for other products.

There is great information about B12 in this thread. This bit, however, requires clarification. Serum B12 values that are elevated out of range are in fact associated with a number of cancers and other life-threatening conditions. That doesn't mean that if you supplement too much B12 you're putting yourself at risk of those conditions. But it does mean that if your serum B12 is excessively elevated, it may be a sign of a cancerous or other serious condition that requires treatment ASAP. (I had a link to a reference, but it won't allow me to post the link, sorry!)

There is no upper limit on B12 medically. (not toxicity studies)

The out of range upper figure is only useful for those patients NOT taking any supplements before the testing. The ranges were
developed on people not using any supplements, currently or in the recent past.

So the upper readings out of range can imply some medical condition (kidney failure, some cancers, liver disease, etc) being present, that needs further evaluation.

Excess B12 that is not used, or stored by the liver is excreted by the kidneys.

However, some doctors react to high B12 readings with horror...and tell people to stop supplements. This indicates a poorly trained doctor who doesn't understand the test's meaning. I myself would find another doctor who can evaluate things more realistically.

Hello skboren, the “bit” you highlighted from mrsD did not in fact require any clarification as you took the quote out of context. As mrsD said, there is only a problem if your B12 levels are excessively high and you are not supplementing with it.

By the way, it is not good form to join a group to ask for advice one day and then criticize the most knowledgeable member of the forum the next day.

I'm sorry. I didn't mean to offend anyone and I wouldn't want to criticize MrsD. I can see she is soooo helpful to so many people on this message board! I just wanted to point out that there are conditions associated with elevated B12, because one of those conditions might possibly be present EVEN in those who are supplementing B12. I could also see someone with PN getting their B12 checked before they begin supplementing and seeing an elevated result and thinking that it was fine, so I would want them to know about these conditions. I meant no harm or criticism.

Nothing in medicine is 100% accurate or perfect.

Gosh, even the testing can be flawed itself. The calibration of the instruments may use old "knowns" and end up messed up completely. Quest had TWO episodes of wrongly calibrated Vit D testings in the past. One was not discovered for an entire year...so all of those tests were inaccurate!

There are far more people missed who have low B12, (ignored even) than who have an elevation pointing to a cancer or kidney failure. The chem screens on the blood would reveal kidney, and liver problems, and CBCs would show aberrations for anemia or whatever. So the high B12 would only be another test, which often is not used anyway.

Blood cell counts are are much more indicative barometer to judge cancer by. If those are in line a high b12 should be of no concern. Especially if it's from someone on a b12 supplement

What about hydroxocobalamin form of B-12? I am seeing in some places that it may actually be even more effective and potent than methyl version of B-12.

Hydroxocobalamin is still an inactive form of cobalamin in the body and requires conversion.

http://centraldrugsrx.com/doctorblog...of-vitamin-b12

This link explains the 3 forms available, cyano, hydroxo, and methyl.

Methylcobalamin/B12 - Dosage?
 

Hi,

I will post more later, but my wife has had extreme sciatica with no compression or identifiable cause (except trauma) for about 5 mos. now. She is 30. She was also just diagnosed with small fiber neuropathy, but she never had any neuropathic issues before she fell in April. One thing I notice is that her B12 levels are EXTREMELY low (she has had so much bloodwork done in the past few months). I wonder if it's affecting her ability to heal. Her docs say that everything is "normal" -- including her thyroid hormone levels, but I also think there's something up there.

Her B12 serum result is 254 (normal values 180-914 pg/mL at this lab).
How much methylcobalamin should she start to take per day? We are afraid to put her on a B complex because of the small fiber (her B6 levels were non-toxic but the neurologist said B6 was fine and he didn't think she should be on a B-complex supplement). She is currently taking benfotiamine as a result of my readings on these boards.

Thanks so much.

A sublingual (under the tongue) Methyl B-12 of 1000mcg a day is a great start. Take in the morning on an empty stomach. B12 even in high doses is not something that has very many bad side effects if any at all. Don't let a doctor ever worry her if her B12 levels come back high at her next blood draw either. B12 is really one of the best supplements out there. Check the research on it. It literally is maybe the most important vitamin we can get in our bodies. With small fiber the only B vitamin that is iffy is B-6. High doses can supposedly trigger neuropathy symptoms. Even B6 in lower doses is safe though. Benfotiamine and B12 are great choices. benfotiamine will help detoxify.

Just to add to Patrick's reply - if you take a break of at least 3 days (preferably a week) from B12, before having a test done, you'll get a more accurate result on the test. (ie: not a false high result). Don't eat or drink anything for an hour after taking. Also I chew the sub-lingual - still works - and doesn't irritate my mouth. Don't expect a large jump in test levels - the number will increase slowly.

I'm glad I found this thread. I shall sit down later and have a proper read.

A blood test a few months ago found that I was anaemic, so they checked my vitamin B12 and iron. I was very deficient in iron, have been put on supplements and my haemoglobin is back in the normal range. Addressing the vitamin B12 has been a fight as no one seems to think it's an issue, especially now I am no longer anaemic. Since late 2014, I've had tingling and numbness in my hands and feet. I've been told I have carpal tunnel and tarsal tunnel, as a result of having rheumatoid arthritis. I disagree and think the vitamin B12 is the cause. My level was 174 and lowest end of normal range for my doctor's lab is 190. I went back 4 times to discuss it and they finally acquiesced and prescribed vit B12 tablets. However, I feel I would benefit more from the injections. I have gastroparesis and have difficulty absorbing medication. My gastro has advised that I take all meds in liquid or injection form. Still, my normal doctor refuse to believe that the vitamin B12 is the cause of my nerve problems.

I'm in the UK and cannot find anywhere locally that I can pay for them privately.

Could it be B-12 deficiency?
 

This thread has so much useful information. I have posted twice under different categories about my medical issues, but I'm hoping Mrs. D or someone will see this here. My B-12 level is 373. Since February I have experienced numbness and tingling. It started in feet and hands but has progressed to other areas. It is constant and unrelenting. I have no other symptoms. I had a normal nerve conduction test in my legs. I have an MRI of my brain on Monday as my doctor is suspecting MS? She completely dismissed my B-12 level as normal. I have read enough to know that it is on the low end so I have begun to supplement. A friend of mine is a compounding pharmacist and she really thinks my symptoms may be from the B-12 levels. I guess I just wonder if anyone agrees with her? Holding out some hope that it may be the case. I suppose I will have more answers after the MRI. Thanks for listening.

Taking 1000mcg (1mg) methylcobalamin orally on an empty stomach is not dangerous or like prescribing drugs.

The new acceptable low is 400pg/ml. Since methylcobalamin is OTC you can do this yourself and it is not even expensive at pennies a day.

Many doctors remain clueless about this subject.

https://www.youtube.com/watch?v=BvEizypoyO0

and
this link is for doctors continuing education, and was put up in 2003
http://www.aafp.org/afp/2003/0301/p979.html
Print it out and give it to your doctor.

Thank you for those links. I will read today. One more question, what is the consensus on the effect of oral contraceptives on B-12? I have been on the pill for the better part of 20 years. I really want to get my B-12 level up and hope the pill won't interfere with supplementing. If so, I will just come off of it! Thank you so much for any info on this. I have read conflicting information.

My levels were in the 300's. I suspected pernicious anemia and was taking b12. My levels went up but my symptoms did not improve until I started the methyl b12 on an empty stomach. What is noteworthy is that I had the Babinski reflex indicating cns involvement for at least 2 years. On the following neuro exam, after 2 months of methyl b12, I did not have the Babinski reflex. The doctors were totally baffled. I however, because of neurotalk, was not. Immediately, I brought methl b12 for my cousin, who was diagnosed with a very rare progressive only ms, but after 10 years, his Babinski sign is here to stay.

If someone has the MTHFR gene, will b12 shots even work?

The reference book I use to look up drug depletions, does list combo birth control pills (both estrogen+ progestin) as depleting B12. It lists all the B-complex too as affected. So a B-Right complex by Jarrow, may be needed too.

So you will have to supplement well, and then get retested in 3 t 6
months. Stop the supplement for at least a week, before retesting.

Your level is not dramatically low, but it is low enough to pay attention to. 400pg/ml is the new low, but the labs have not changed the ranges still after 10 yrs.... and lows of 200 are still considered by doctors as "normal" because a red flag doesn't come up at those low levels.

Some websites exist now on this topic, B12 deficiency and drugs:
https://womensinternational.com/conn...itaminb12.html

Thank you for the info!
 

I was diagnosed last week with PN based on symptoms and a nerve test. It has come on suddenly although I have had slight numbness in my feet for over ten years. I think the combination of a daily dose of Protonix and Metformin* caused a b12 deficiency ... and now with what I've read here ... I'm pretty sure that's the cause. I'm not diabetic and I WAS very fit, so I'm hoping that I can restore my B12 levels and stop the progression of nerve damage.

Of course, 3 out of 3 doctors agree that my "normal" B12 serum level precludes a B12 deficiency as the cause of my symptoms. They also all agree that there's nothing they can do.

BUT ... armed with the information that each of you so generously shared ... I'm going to the 24-hour Walgreens to buy a bottle of Methyl B12 (and will take on an empty stomach!).

Any advice on B12 brands or issues I need to know will be gratefully appreciated! Also - are shots better? My situation is pretty bad ... significant impaired gait, twitching and jumping muscles in legs and arms and feet are totally "gone".