[MelodyL]

Originally Posted by marty75

I have tried to do a lot of reading here, but there's a LOT to cover. My apologies if this has been discussed before and I didn't see it.

My doctor tested my B12 as soon as I began experiencing pain in my feet 13 years ago. (I have PN). He kept telling me it was normal. However, in May 2013 I saw a specialist when I could not sleep (literally, did not sleep for days/weeks), got confused easily, lost my up-close hearing & had my distance hearing go massively hyper-sensitive, had difficulty breathing, my heart started hurting and I began falling down. He found my B12 to be 130 and ordered my doctor to immediately begin B12 injections. I got weekly 1000mcg (I believe) injections for 2 months, then bi-weekly for 2 months, and I now get them monthly. It took 9 months for my hearing to come back. I am sleeping better but still have issues. My last blood test was 325-ish. My doctor says this is in the normal range, but I don't think so. My specialist said he thinks my PN could easily be from prolonged B12 deficiency.

I am 38, and have totally normal stomach acid levels. I take an oral B12 but my doc says I am unable to absorb it. I only feel better for a few days after each injection. What SHOULD my minimum level be? Should I be striving to get it up to 600? 700?

My last B-12 level was 2000 and I'm doing JUST FINE.

Doctors do NOT know anything about B-12 levels. Read all of Mrs. D. posts on B-12.

I take Puritan Pride's Methyl B-12 (that's the important kind of B-12 you should be on).

I take 5000 EVERY morning. Been doing this for YEARS now.

No more peripheral neuropathy and I can do things at 66 that I didn't do when I was 30. Of course I grow my own food and don't smoke and all that stuff but I know that the Methyl B-12 that I have been taking for almost 7 years has literally changed my life.

Read up on this. It's all over the internet and especially on this thread.

Best of luck to you.

Melody

[mrsD]

Marty, Injections are cyano form, and not active in the body. Many people have a genetic error called MTHFR which cannot activate synthetic B12, and some B12 in food to the methyl form.

It would be best if you took 5mg of methylcobalamin a day orally, on an empty stomach, to raise yourself that way. Your levels are low still even with the infrequent injection (which is really not working well for you).

Sleeping is difficult because MethylB12 is a cofactor for your brain to make melatonin from serotonin. So if you don't have it you cannot sleep.

There are many studies out now showing oral works. But you have to take it correctly--- on an empty stomach. I have the links to medical papers on the first page of this thread for you to read.

You can buy methylcobalamin on line just about anywhere now, including Puritan's Pride at a savings. It is also in some local stores now, Walgreens' and Costco carry it now.

The longer you remain below 400pg/ml the more damage you sustain. This is inexpensive to do yourself. Doctors remain clueless about this topic so I have this information here for patients to take control of this therapy themselves.

[marty75]

Thank you both MrsD and MelodyL - I do take my B12 on an empty stomach, but my doctor says based on how low my levels are he expected me to require injections for the rest of my life. I don't know what to say about that - they do work. They saved my life. I only started taking oral B12 six months after the injections began (Jan of this year). I always feel MUCH better in the few days following an injection, then my energy slowly trickles away. That's why I was looking for more info. Judging by how my doc thought sub-200 B12 levels were fine you are right - he doesn't know much about B12. Not that I'm blaming him. I'll definitely be taking the methyl B12 now.

MelodyL - do you remember approximately how long you took the methyl B12 before you noticed an improvement?

[mrsD]

One injection a month is not enough. That is the old old treatment, found in the therapy books doctors use as a reference.

Injections last about 72 hrs, and the rest of the month there is nothing. Our bodies evolved to have "some" B12 every day. There is a cushion from the liver in case of famine that may last up to 5 yrs. Once this is depleted it may take years to rebuild and won't ever if you remain low daily.

Here is a link from this thread from the 1st post to a study showing absorption from various modes of administration based on blood levels:

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

Oral taken on an empty stomach, shows 13mcg/1000mcg administered. The RDA from food is about 2-4 micrograms.
So 1000mcg orally may give up to 13 absorbed. Multiply by 30 days and you have 390micrograms in your blood ideally per month.
Compared to one injection of 1000mcg yielding 150mcg absorbed for one dose only.

It is no wonder you feel low, after a few days from your shot. You ARE low.

With methylcobalamin being so available and inexpensive today, you don't need shots anymore! And most doctors don't even know what methylB12 is!

If you do the oral 5mg (because you are very deficient) for 6mons and get retested you can surprise your doctor mightily...it is worth it to get tested then and come back with a higher level than 1000 (which is what many here aim for).
Costs you pennies a day, too. Then YOU can educate your doctor and perhaps help other patients of his/her.

[marty75]

That is EXACTLY what it feels like. I knew in my bones once a month was not enough but my doctor would not reconsider. You've provided me with more useful info in that one post than I've been able to get out of my doctor, his nurse, and the limited research I'd done since my decline last summer.

I am very excited to try the methyl B12! Thank you, sincerely.

EDIT: Ok... just found out the oral B12 I had at home is methyl. It's the one my doctor said I'd be unable to absorb. I decided to start taking it again - just took the recommended dose and I AM ON FIRE. I'm bright red and everything is burning! This is flushing... to the extreme. Any thoughts on that?

[mrsD]

What dose and which brand?
Did you swallow it or hold under the tongue?

Reactions before when you used it in the
past?

How long until your reaction started?
The amount of B12 is minute in any oral
Tablet. But you may be intolerant to dyes,
flavoring, or the fillers.

You may have to buy another brand if
You are intolerant to this one.

Is this b12 alone or is it a mixed product?
Rapid flushing can come from Niacin,
Which is B3.

[MelodyL]

Originally Posted by marty75

Thank you both MrsD and MelodyL - I do take my B12 on an empty stomach, but my doctor says based on how low my levels are he expected me to require injections for the rest of my life. I don't know what to say about that - they do work. They saved my life. I only started taking oral B12 six months after the injections began (Jan of this year). I always feel MUCH better in the few days following an injection, then my energy slowly trickles away. That's why I was looking for more info. Judging by how my doc thought sub-200 B12 levels were fine you are right - he doesn't know much about B12. Not that I'm blaming him. I'll definitely be taking the methyl B12 now.

MelodyL - do you remember approximately how long you took the methyl B12 before you noticed an improvement?

Hi there.

I remember like it was yesterday. About 7 years ago (after I was diagnosed with PN due to diabetes and my foot was tingling and zipping and burning), I began taking 1000 each morning. I knew in one week that I needed the 5000. Best decision I ever made.

Best of luck to you.

And thanks Mrs. D

Melody

[Pixel22]

I've read most all of this thread and although my B12 test came in high (I think falsely since I was not told to fast and had a multi-vitamin and energy drink that morning) at 1934, it appears there is no harm in taking this vitamin. I am also taking Benfotiamine, R-Lipoic acid and Krill oil. I have two questions about the 1000mcg Methyl B12

1. I started it yesterday and took it on an empty stomach and again this morning. I got very nauseated from it both times and that feeling lasted a few hours. Is this a normal response? I don't remember reading people having that issue.

2. Today when moving a very light chair I got a shooting pain through the palm of my hand. Generally my pain is bone deep toe and foot pain with only numbness and tingling in my hands. The hand is still weak a few hours later. The only new thing is the B12. Is it possibly related to adding the new supplement?

[Marie33]

Originally Posted by Pixel22

I've read most all of this thread and although my B12 test came in high (I think falsely since I was not told to fast and had a multi-vitamin and energy drink that morning) at 1934, it appears there is no harm in taking this vitamin. I am also taking Benfotiamine, R-Lipoic acid and Krill oil. I have two questions about the 1000mcg Methyl B12

1. I started it yesterday and took it on an empty stomach and again this morning. I got very nauseated from it both times and that feeling lasted a few hours. Is this a normal response? I don't remember reading people having that issue.

2. Today when moving a very light chair I got a shooting pain through the palm of my hand. Generally my pain is bone deep toe and foot pain with only numbness and tingling in my hands. The hand is still weak a few hours later. The only new thing is the B12. Is it possibly related to adding the new supplement?

Hi Pixel
Sorry I can not answer some of your questions about the Methyl B12. But I take 1000 mcg Methyl B12 every morning on an empty stomach too. I never got nausea or anything like what you are experiencing. It does not bother me at all. My B12 level is also high, but I continue to take it. ( I don't know if its safe to take B12 when your blood level is high). I also take 150 mgs Benfotiamine B1, along with 1 mg Biotin, Folic acid 800 mgs, Vit C, Krill oil, calcium and 200 mgs Magnesium every day with the hope that it will help with my Idiopathic SF Neuropathic pain.(I'm not diabetic) I have been taking these supplements for over two yrs now, I don't think they are making a difference.
How much Benfotamine do you take ? Does it help you? How much R Lipoic acid do you take? Can I ask you what condition you are treating. And what you take for your pain. I'm also on 350 mgs Lyrica a day, and Tramadol as needed. Nothing seems to work. I wish I could meet someone that says their pain is better with the meds and supplements they take.
I'm sorry your not feeling well, I hope you feel better soon.
I'm sure people with more knowledge on B12 will chime in soon..Take care

[mrsD]

It is unlikely that the B12 is causing the nausea. If you take it in the morning on an empty stomach...many people get nauseous in the morning, anyway. You could take it anytime during the day, as long as you wait about 4 hrs after any food.

Some people report here heartburn from lipoic acid. Could that be a concern for you? (not many have reported this side effect, but some have).

Originally Posted by Pixel22

I've read most all of this thread and although my B12 test came in high (I think falsely since I was not told to fast and had a multi-vitamin and energy drink that morning) at 1934, it appears there is no harm in taking this vitamin. I am also taking Benfotiamine, R-Lipoic acid and Krill oil. I have two questions about the 1000mcg Methyl B12

1. I started it yesterday and took it on an empty stomach and again this morning. I got very nauseated from it both times and that feeling lasted a few hours. Is this a normal response? I don't remember reading people having that issue.

2. Today when moving a very light chair I got a shooting pain through the palm of my hand. Generally my pain is bone deep toe and foot pain with only numbness and tingling in my hands. The hand is still weak a few hours later. The only new thing is the B12. Is it possibly related to adding the new supplement?