[khakis]

Thank you so much for your reply. I wondered abt lab error too. I do sporadically take my multi--which has extra b12. I don't eat a lot of fortified food (cereal, etc), but my new birth control has added folic acid.
What I haven't been able to understand is that many journals say folic acid will mask b12 deficiency--correct the anemia but not the neurological problems--what does that mean in serum labs? Will a serum level show high b12 that is not accessible to the cells? I do not think it's a kidney/liver problem--they did a full panel and I know my creatinine, etc were good. The only other off number (besides my TSH) was very low WBC--but I have always had that and no Dr seems to look further.
I will ask for another lab, I was thinking about the MMA too. Wondering if a urine might be helpful.

[mrsD]

There is a difference between folic acid and folate.

Folic acid is synthetic and may compete with natural folate at
the blood brain barrier, and this may cause problems.

Folic acid is methylated thru a system called the MTHFR reductase system, and if you have a genetic error in DNA (which is not rare---10-30% may have it) you cannot activate B12 either or folic acid to their active forms in the body.

http://advances.nutrition.org/content/3/1/21.abstract

http://www.plosone.org/article/info%...l.pone.0024976
(this article shows folic acid is not active.)

http://www.ajcn.org/content/87/3/517.long

These articles were sent to me by poster here, Karsten.

You can see it is a complex subject, and hence even doctors will
have some difficulty answering your questions, and/or interpreting the test results.

I'd consider getting the DNA polymorphism test to see if you can activate/methylate properly. This typically runs just over $100 without insurance.

[Shezian]

This helps so much. It's nice to have someone to talk to about this.

I have many posts to come.


Sue

[julleri]

This is my first post on this forum. I am really glad to have found it, as I've been recently diagnosed with low B12, but my own research has been more valuable than my doctors' knowledge on the subject.

My level tested in February was 204. The doctor who found this gave me a shot of B12 and I felt better almost immediately. He said that I'd get another one in a month, and that if I wanted to in the meantime I could take B12 supplements or didn't have to (see what I mean about doctor's lack of knowledge?).
A few days after the shot I tried a 3000mcg sublingual B12 pill and it drove me crazy. I immediately called the doctor office and they said that if I'm getting the shots once a month I don't need the pills. I immediately stopped the pills.

Nearly a month went by and I started to feel very sick. I would get very weak, confused, fatigued, feel like the life was just sucked out of me. I began to have spots in my vision and felt like I was going to pass out and die.
I called the doctor office a couple days early to request the shot as I think I was experiencing symptoms of low B12. They gave me the shot and that evening I felt better again. This lasted all of two days and I felt just as sick as I did that day I called their office. I went back to talk to the doctor who said you only need it every month and the levels should go up. I knew then and there I'd have to go to a different doctor to get more B12.

I called my primary care physician with tears in my eyes (because I was so weak and sick I thought I was going to die, literally) and went into his office and begged for more B12 injections. By the way, I had tried another sublingual tablet prior to this office visit and again had a terrible negative reaction. It just made me feel crazy and sick.
My therapist said it was likely the sugar additive ingredients that did this, this one in particular was xylitol. She said she's seen it make others sick before, and many just can't tolerate them.

My primary care obliged and gave me intramuscular shots that I could give myself. He gave me cyanocobalamin, and I seemed to do OK. I took it more often than he prescribed based on a treatment protocol I found online. I went back to his office and requested methylcobalamin shots and that I could have them every-other-day for two weeks, then maybe once a week for a month then re-assess.

I haven't taken any shots in a couple days, and I already feel out of it. Confused, in pain (not sure if this pain is specifically from this, but I am wondering if it is...), fatigued, feel sick like I may pass out. In any event, I will give myself the last of the two-week every-other-daily dosings tomorrow morning of 1000mcg IM methylcobalamin.

My question is in regards to daily oral dosings. I am reading on this thread and another website (the Rose's website) that one can take 1000-2000 or more (up to about 5000) mcg of oral cobalamin (in either cayno or methyl, or others) every day and have just as good results, because regarless of the fact that if you have intrinsic factor or not, you will scrape just enough from a mega dose to get enough you need (1-10% of the pill).

My question is this - given I cannot tolerate sublinguals (and is this heard of? does anyone else not have the ability to tolerate sublinguals for some reason?), would I be OK to try an oral dose, one that is not sublingual but is rather swallowed, and later absorbed by the intestine? I do not know if I am missing intrinsic factor or not. That was my reason behind trying sublinguals. However, I found that for whatever reason I just cannot tolerate them.

I am so confused and disturbed by this. I do not know why my levels are low or where this came from and for how long I've had it. I have a range of strange things going on with my body, and I'm not sure how much is attributed to low B12 or is from other factors (recently stopped almost 10 years of antidepressant use, had some horrific adverse reactions to one of them, was on a mega dose of another that I shouldn't have been on, etc.).

I have a lot of strange pain and cracking in my upper back and joints, almost like fibro like pains up there. I have a lot of cognitive difficulties (forgetting things, feeling detached from reality, having a hard time focusing and learning new things), and I had many classic low b12 signs like pallor, heavy breathing, confusion, dizziness, low appetite, bleeding gums, greying of hairs (I'm 30!)and other things.

Any advice anyone could give me would be greatly appreciated. I am so glad I ran across these threads.

J

[mrsD]

Welcome to NeuroTalk:

I swallow the sublinguals. They can really irritate the mouth IMO used under the tongue.

Injections only stay around for 72 hrs, so some people swing up and down with B12 especially when low.

Low levels also prevent the normal movement into the spinal cord and brain, and this confuses the enzyme systems that require methylB12 to work properly.

Some people cannot methylate cyano to the active form, and that is a genetic error that can be tested for. MTHFR DNA polymorphism test.
http://labtestsonline.org/understand...mthfr/tab/test

This genetic error is pretty common thought to be 10-30% of people! It also affects folic acid which needs to be methylated to methylfolate in the body to work.

You can ask your doctor for Metanx RX vitamin which has the active forms in it. Take that on an empty stomach.
And take your oral B12 on an empty stomach too for best absorption.

Only a few micrograms are absorbed from each daily dose (of 1000mcg), but this is what the body is used to so over time you will do better.
Our bodies were not designed to be flooded with injectable synthetic cyanocobalamin B12, so some people feel odd, or sense the swinging of the blood levels as unpleasant.

[julleri]

Thank you for your fast reply!

I can't tolerate the sublinguals at all. Would it be possible to swallow a non-sublingual and to get the needed amount of B12 that way? I can't tolerate the additives in the sublinguals.

Thank you,
J

[mrsD]

You can try switching the brands. I find the Puritan's Pride one very soluble, small and with less fillers than Jarrow.

[julleri]

Originally Posted by mrsD

You can try switching the brands. I find the Puritan's Pride one very soluble, small and with less fillers than Jarrow.

Thank you. Is it just the regular swallow pill, not the sublingual, right? Also, time released is that good or bad?

I am experiencing a lot of "brain fog" and feelings of hard to breathe and very weak. Is this common with low b12 that may have gone on for a long time? When I have the shots I feel fine. I gave myself a shot this morning when I woke up, the cyanocobalamin one though, as the methylcobalamin can sometimes give me too much energy.

This is really frustrating. How long before I will feel better from all this treatment? Some days are better than others, I notice (up and down recovery?)

[mrsD]

All companies do not use the same fillers. The Puritan's Pride ones are very different IMO. The inert ingredients are mostly
to improve flow of the powder and are not absorbed if at all.
Puritan's has various vegetable cellulose, mannitol, magnesium stearate (not absorbed), natural cherry flavor.

Not much to react to.

No one can say for sure because everyone is different. But if you notice a significant difference between methyl B12 and cyano injections, then I'd question your ability to convert cyano well in the tissues.

There is always up and down with B12 in some people. The tissues take it up differently and the movement into the brain and spinal cord can take time. Also the liver is storing up extra from each dose for the future.

People who are severely anemic may experience some low potassium as the extra cells gobble up potassium from your other tissues. So eating a potassium rich diet may help you.
A can of V8 juice has over 800mg of potassium.

[julleri]

Originally Posted by mrsD

All companies do not use the same fillers. The Puritan's Pride ones are very different IMO. The inert ingredients are mostly
to improve flow of the powder and are not absorbed if at all.
Puritan's has various vegetable cellulose, mannitol, magnesium stearate (not absorbed), natural cherry flavor.

Not much to react to.

No one can say for sure because everyone is different. But if you notice a significant difference between methyl B12 and cyano injections, then I'd question your ability to convert cyano well in the tissues.

There is always up and down with B12 in some people. The tissues take it up differently and the movement into the brain and spinal cord can take time. Also the liver is storing up extra from each dose for the future.

People who are severely anemic may experience some low potassium as the extra cells gobble up potassium from your other tissues. So eating a potassium rich diet may help you.
A can of V8 juice has over 800mg of potassium.

I think I reacted to the mannitol in one of the brands I took. The other had xylitol, also something I negatively reacted to.

Are there any brands that don't have these in them, that I can just swallow and I just get the vitamin?