There is a condition, which BTW is not rare, called Pyroluria.

It can be misdiagnosed as mental illness. Estimates are that 10% of people can have it...and it can cause severe anxiety and mood swings.

Please read this:
http://www.drkaslow.com/html/pyroluria.html

Thanks for ALL your help this morning, MrsD.

I'm waiting for my vitamin order to come in and will make sure I ask my neuro what my B12 number is when I see her in two weeks, if not sooner. I hope the tests come in quickly so I can get in there quickly and start being proactive to get this under control.

Units of measurement used in B12 blood tests
 

In the USA B12 is measured in picograms/mL (pg/mL) while in Australia and other countries that use the SI system the units are picomoles/L (pmol/L).

According to the American Family Physician paper by Oh and Brown (2003)
http://www.aafp.org/afp/2003/0301/p979.html
the conversion factor is approximately 4/3.

To convert from pmol/L to pg/mL multiply by 4/3 or 1.355

To convert from pg/mL to pmol/L multiply by 3/4 or 0.738

Martin

How low is low B12 level
 

My B12 is 206. Neuro says normal is from 180 - 800 so mine is normal low. Cal you have symptoms at this level. I have weird vibrations/shaky feeling most of time. Specailly when I am standing or sitting too long. ANA was positive at 1:160 but eveyhting else was negative. EMG negative for left side. All tests so far are negative. I have pain where I have vibrations. In leg calf muscle and behind neck. Am curious. Have thryoid but controlled with meds.

Hi.

Yours is NOT NORMAL LOW, Your's is TOO low. Much too low.

I take 3000 to 5000 of Methyl every morning. My last test had my B-12 level at 2000. I feel fine and have no symptoms of neuropathy (which is why I went on Methyl b-12).

Doctors DON'T KNOW ANYTHING ABOUT METHYL B-12.

They practice medicine, NOT NUTRITION.

Just wanted to add my two cents

Please read the beginning of this thread. There is a link on the first post to American Family Physicians website that recommends anything below 400 should be treated.

206 is low enough to get permanent neurological damage with time.
Print out the article and take it to your doctor....definitely he is behind the times.

It is appalling how many people are tested by doctors and then told these antiquated readings are "normal" ...it is a waste of resources and sends the patient down a long painful path of degeneration!

Melody is right....start now to fix yourself. It is not expensive, it is safe, and effective. Take the oral at 5000mcg (5mg) daily on an empty stomach, for 3 months. Then get retested. You can decrease as you choose or stay at the 5mg level. Choose methylcobalamin for best results.

Please read the beginning of this thread carefully.

I just spent the last few hours reading about B12 from the first post. I'm amazed! I know my neurologist tested me for a vitamin deficiency, but didn't tell me the results.

I'm going to take the B Complex with my multivitamin for a while until I can get some higher quality brand. Thank you so very much!

My son and I are vegetarians, so I know he'll need something as well. I'm not sure if his Poly-Vi-Flor is enough. Kind of scared to mess with that, though.

http://www.rxlist.com/poly-vi-flor-drug.htm

There doesn't appear to be any B12 in Poly Vi Flor.

Depending on the diet... eggs dairy, have some B12.

You should also check my Vit D thread... also being recommended for children as well (over certain ages either 1000IU or 2000IU now). Poly Vi Flor has the old amount.

http://neurotalk.psychcentral.com/sh...hlight=Vitamin

Hey mrsD, you said this:

And MelodyL (the overachiever :winky:) says that hers is 2000.

I'm not clear on exactly what number we're shooting for on the B12 level. When I first started my search for PN answers, I tested at +800 without supplementation. So is it correct to think that lack of B12 is not a contributing factor to my PN cause in my case? And if it's not, can getting my B12 higher still help?

Sorry if you've already gone over this...if I missed it, you can give me some study hall detentions if you want.:)

Sometimes I wish Rose were here. She was our specialist on this subject from 1999 onward.

Her thought, which I read many times, was that people vary, and some need more than others. 800 may be enough for many people. But the logic of it all says, if you have symptoms, then maybe you need more than the average. So with time I've sort of come to the conclusion that perhaps the target should be 1000 or more. People with symptoms just are not "normal".

Because B12 is not really toxic, we can be liberal with it. Also it is not expensive either. So if you raise your levels to 2000, ( most tests don't go higher than that--because of the instrumentation limits), and you get BETTER...then that is your answer.
If you don't change at that level, then nothing is lost and you can discontinue. I'd stay high for some time, at least 6 mos to a year, and then you can decide to no longer do it, if there is no improvement.

There are not many supplements that you can do this with. B12 is rather easy to manage. This affords some leeway in making the decision.

Hi. Just wanted to add my two cents.

I went on Methyl B-12 because I had gone to my podiatrist and he used some vibrating gadget on my toes after he cut the nails.

Well!!!!! I actually almost kicked that man. My toes were vibrating like CRAZY!!

And he was going : 'Good , good, you have feeling, that's good"

I'm looking at him like he was crazy. I said 'what on earth are you babbling about, you did this to me, are you nuts, my feet are TINGLING."

He then said "yeah, but you have FEELING".

Let me tell you, I NEVER WANT THAT FEELING EVER AGAIN. It lasted all day. I immediately went to the store to buy Methyl B-12 (because I knew all about it from going on these boards).

Couldn't find it anywhere. And any doctor I told this too, completely pooh poohed my taking Methyl B-12.

I finally went online and began taking it. And the funny thing, is a few days later I dropped a bottle of soda on my foot AND THE BUZZING almost drove me nuts.

I said "this is what Alan lives with???"

As soon as the Methyl B-12 came (I had initally bought the 1000) At least this is what I remember. And I began taking it . I knew within a week that I had to up the dose.

The results were amazing.

Now I already knew I had (what the docs at Cornell told me ), the beginning of neuropathy in the tips of my toes. No pain, no nothing, just a bit numb when theydid the filament test on the tips of my toes when I was in the Accord diabetes protocol at Cornell.

So flash forward a while and the podiatrist is using this tool and I jump out of the chair. (I will never forget this as long as I live).

So I've been on Methyl B-12 for about 2 years now. Could even be more. I have no idea. I don't care either.

I have complete feeling in my feet, and even better, when the podiatrist does my feet, I let him use that vibrating tool and I didn't jump out of the chair. Yeah, it tickled but I could stand it.

So my nerves on not HYPER SENSITIVE.

Thank god for Methyl B-12, Rose, and our lovely Mrs. D.

And right now, here in Brooklyn, NY, we are probably going to be having a hurricane because the wind outside is blowing everything into my window and around my kitchen.

This is happening in MAY??
lol

Melody

Thanks to mrsD and Melody...I have been taking B12 half-heartedly, but it's the cyco-whatchamahoozits because I bought a big jar before I knew the difference. I've mostly been focused on the vitamin D because I did test low on that. But you've convinced me--will get some methyl tomorrow.

And put some rocks in your pockets Mel...it's been blowing like the devil here in Pittsburgh since the wee hours this morning and still is as I type, so you'll probably be getting it until tomorrow morning at least.

Rocks in my pockets IT IS!!

I'll bet I'll get blown down the block tomorrow morning when I go out for my usual Dunkin run.

lol
mel

Yeah, it's really windy out here on the island too. I wish the pollen would all blow away!!!:p They are promising winds of 25-30 mph with gusts up to 40.

Joan, it is true that methycobalamin is best, but some people do well on cynacobalamin too. I wouldn't toss it, well, with money as tight as it is, I wouldn't.:eek:

I take 5000mcg of Jarrow Methycobalamin, have for about 3 yrs I think. My B12 level was 1700 in Jan and my neuro told me to stay with this dose.

I finally figured out that I am super sensitive and had been getting glutened by foods I trusted to be GF simply because they were labeled as so. Now that I have stopped eating any processed foods I am finally losing weight. So come June when I see my neuro again, I am hoping my vitamin numbers are going up where they belong now..we will see.

Booyah! Count me in the B12 club!

Deb, you invented a new verb: glutened! At least I think it's new. I like it!

My problem is that ever since I started losing weight for no reason about a year ago, I can get away with eating any old $#!+ that I want without Mr. Scale punishing me. I have to get back to the way I used to before I became one of those people I always hated.:rolleyes:

Rose used to say that the amount that shows up in your blood test is not the same as what you are actually absorbing into your tissues, so from what i have gathered it wouldnt hurt to give it a go for a while and see if it helps. Besides we are all very different and what may be enough for me may not be enough for you depending on how much damage needs to be repaired.

:DWell, it's not a new verb, it's one we celiac's use all the time. When we eat gluten, it's poison to us, but we call it being "glutened"! It definitely is not a fun verb!!!

:hug:

Question about NDPH
 

Mrs. D, my daughter has been diagnosed with New Daily Persistent Headache. We have tried many meds without effect. Are you aware of any vitamin deficiencies that could contribute to this problem or of any vitamins or supplements that might be effective in treating this terrible headache

No I am sorry fabdou....

Treatment of persistent headache is a specialty and should be diagnosed carefully to rule out pressure changes in the CNS fluid of the head.

People with chronic pain in general are showing up low in Vit D tests. So you could have that done, as well as B12 and B6 at the same time. Vit D should be 50-80ng and B12 should be 400 or above. (doctors still use antiquated ranges and tell patients they are "normal", when in fact they are really LOW-- so keep this in mind and get your results).

Some things in the past that have been suggested are feverfew extract and riboflavin Vit B2. It wouldn't hurt to try these if you haven't already. Magnesium treatment does help some patients with migraine. I have a magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html

I'd consider a food intolerance too. Gluten and dairy are the biggest factors in neurological illnesses.

So right! I've just had bloodwork done and all my B numbers were fine. At the same time, I had some kind of urine testing (you know - fill all the little vials and send them off in a freezer box to, in this case, Genova Diagnostics) and my vitamin B levels were awful. Evidently what's in my blood isn't doing much for my tissues -- or my body. (What? It's just hanging around? Skating on by? The nerve!) My naturopath is trebling my doses of several things. Cannot wait to feel better!!

What I wish someone could explain to me is how the lack can show up in urine and not in blood testing. . .

Marcia

If you are not converting some of the Bs to active form, they may show up in the serum as high.

B6 must be activated to P5P. (riboflavin is used for this conversion)
B12 is activated to methylcobalamin
Folic acid is converted to methylfolate.

There are genetic errors that prevent this conversion. You inherit them. They are called MTHFR polymorphisms and I explain it earlier on in this thread.

A doctor came on to another thread here about them recently...
take a look: I have read 10% of people have this, but he claims new info at 30%:
http://neurotalk.psychcentral.com/post663808-20.html

Metanx is an RX vitamin with all 3 activated B's in it. That is what that thread is discussing...generic and OTC versions.

folate level high, Why??
 

I have pn from schwanomas removed from my spinal cord at L4-5/S-1. I have a bad left leg and foot.

My endocrinologist did a workup a week ago of blood work and my folate level was over 20 and considered high. I have been trying to find out what this means.

Any help would be greatly appreciated.

CTYankee3

High folate accompanies low B12. It may also be high if you are not converting folic acid in the body to its active form,
methylfolate. The folic acid builds up therefore. And your tissues may be starved for the active form.

Getting a homocysteine test will reveal more.
People with the genetic failure MTHFR polymorphisms cannot make active vitamins for the body to use, from those taken in pill form or from enriched foods. Many foods today are enriched with folic acid, so that may read high in some people.
People with the MTHFR gene polymorphism typically develop elevated homocysteine as they age.

Just read the B12 thread. Thanks to all for this very important discussion.

Question re this statement: "Low B12 actually damages nerves, the myelin that insulates them is maintained by B12 and other nutrients. Myelin damage also shows up as numbness/tingling and peripheral nerve pain."

I have small fiber neuropathy. As I understand it, the nerves affected are not myelinated. Will B12 improve my condition?

Thanks.

Mrs D will come along with the technical info for you, but I can say, yes it does help. I have small fiber/sensory neuropathy, and I have been taking B12 for 6 yrs. It does help, greatly slowed the progression of my neuropathy, then started healing in some areas.

Yes, B12 has other functions too in the cell itself.

This link explains this complex molecule pretty well.
http://en.wikipedia.org/wiki/Vitamin_B12

scroll down to "functions", and you will see other uses of B12 besides maintaining the myelin sheath (which is composed of fatty acids).

I often find it amazing that such a tiny amount of this one substance can affect us so globally!

Thanks for these responses.

Now, I have a concern about folate/folic acid. For many years, I have been taking a reputable multiple vitamin with 1000 mcg of "Folate (= Folic Acid +Folacin)." After finding this site, I added in 800 mcg Folic Acid (Solgar brand). Is is dangerous for me to be taking folic acid in such high doses?

There is a thread where I bring this new problem up...and a doctor came on with additional information:

http://neurotalk.psychcentral.com/sh...ghlight=Metanx

It is long, but I think worth reading carefully.

Until about a year or so ago, the common thought was folate was good for everyone. Then young women started using high dose folate for preventing spina bifida in their babies. Then, some new data emerged that some of these high dose patients were showing up with colon cancer at a young age.

According to the doctor who comes on that Metanx thread, it is the "unactivated" folate that may be to blame. But still the research is not firm on that.

I stopped recommending high dose folate over a year ago, because the subject remains murky.

Folate has been pushed and even added to US foods, in the hopes of reducing heart disease/stroke which may be caused by elevated homocysteine levels.

I would keep your total folate consumption down to 800mcg a day, until this data clarifies.

Methylfolate is available now thru Solgar at 400 and 800mcg doses. It was off the market for a while, because Merck, who holds the patent for making it, wanted to control it and make more $$ off the RX versions. But it now has returned to OTC status. So if anyone is really concerned, using it instead of folic acid regular type, may be a better intervention. But there are no guarantees yet.

I read this on this site. It is why I raised the question.

Thanks again.

more links:
 

Back in 1999 we were all on the "older format" at BT, some of us that is...;)

rose appeared there with her experience with low B12, and she used to provide the AMA Journal paper by Dr. Chris Snow MD which appeared that year and was a turning point for medicine in this country, for interpreting serum B12 levels. For a while this paper was only available to members of the AMA and it was not online. Rose sent me that article thru the mail, back then as she did for many other posters.

Well, that article is now available online and here is the link to it:
http://archinte.ama-assn.org/cgi/con...ll/159/12/1289
(note: picomoles is a European and other country lab report, and we use pg/ml in US-- this link explains how to convert them:
http://neurotalk.psychcentral.com/post627358-43.html )

This article is often quoted in the bibliographies of other papers now, so it is nice to have it to refer to. Some of the information and graphs in it were picked up by AAFP, in their online reference for doctors, in 2003. I gave that link in the first post on this thread, so I won't repeat it here.

Over the years the formulas for oral B12 have changed. I have yet to see the new enhanced absorption one yet, but I understand it is coming. Methyl B12 (bioactive form) oral is available now and it supercedes the cyano (which is not active and is synthetic) by far. Methyl B12 is also available by injection from compounding pharmacies and is mostly used by the autism community, but any doctor can order it.

Also parallel discoveries in pharmaceutical dosage forms and bioavailability about microgram absorption of drugs failing when food is present in the GI tract (esp. fiber) have not yet trickled over to oral B12 recommendations, we often see in papers.
Thyroid and digoxin have been found to not be absorbed when food is present, so now carry the recommendation to take on an empty stomach. Since the oral forms of B12 are in micrograms also, and since they are passively absorbed orally, this recommendation I think should apply to them. Testing for intrinsic factor (the Schilling's test) has been dropped by many labs today. So many doctors and patients have no idea if they have working intrinsic factor or not. The antibody test to parietal cells is sometimes used but it is expensive and often not done either. When intrinsic factor is working, oral B12 will be absorbed better. But when people present with significant neurological symptoms one has to wonder if intrinsic factor is NOT working as it should. So expecting only passive absorption of B12 in the intestine is what we have to go on.
The AAFP link has some nice color illustrations to show how B12 is absorbed ideally, so please check that out.

I have a question about Colitis. I'm putting it here because this is about vitamins and minerals, etc.

If a 31 year old woman has colitis, and everything she eats goes right through her, shouldn't she be taking SOME SORT OF VITAMIN SUPPLMENT, B-12, Omegas, I mean, shouldn't a person who goes to the bathroom all day long, well doesn't that imply that she is NOT getting any nutrition whatsoever.

This person weighs about 110 lbs, is tall, very very thin, smokes all day long and drinks more than one should drink.

So isn't this a time bomb waiting to go off?

I know that a regular person doesn't quite get all their nutrition from food, but wouldn't a person with colitis have to be especially diligent about supplementation?

I've mentioned this to her family. They think I'm nuts.

thanks much

Mel

She should get tested to see what is going on. B12 is absorbed before the colon. She might be getting more than you think. However, potassium and magnesium may lost more thru diarrhea. Crohn's is more damaging for malabsorption.

It is hard to say, she should be getting counseling from a dietician at the doctor's.

mrsD

I hear you Mrs. D, but that's NOT GOING TO HAPPEN IN THIS LIFETIME.
Some people never listen and never learn (until they wind up in the hospital). So far, she's been very lucky. She hasn't been to a doctor in YEARS. Her whole family has a history of colon cancer and everyone else gets regular colonoscopies, etc. Not her. And she doesn't eat anything that contains B-12. She'll just eat any kind of fast food and then she'll go to the bathroom.

Thanks much for your information.

Melody

Hello,
I found this site yesterday. The information on this thread is amazing!!!
I will try and make my story as short as possible, even though I could go on forever!. I became ill in November of 2009. I was diagnosed with B12 deficiency in December of 2009. At that time my level was 86. I was immediately started with one 1000 mcg Cyanocobalamin injection a day for 5 days, followed by weekly shots until May. Since May I have been getting injections every 3 weeks. Life has been a rollercoaster, to say the least.
Last week I saw another doctor. A neurosurgeon. He diagnosed me as having (I hope I get it right) Subacute Spinal cord degeneration. In the past 11 plus months I have been seen by 9 neurologists, including the ones that I had seen during an 11 day hospital stay in August, have had countless tests done and now finally a diagnosis!
My B12 goes up and down with the highest being 600 on August 27th (after 5 consecutive days of shots). As of October 12th it was sitting at 284. I am due for another check the end of November. I have this feeling it will be below 284.
Questions I have........ should I be taking Methylcobalamin orally each day along with getting injections every 3 weeks?
The results of the MMA and Homocysteine tests would not be accurate if they were done after a run of daily shots for 5 days?
Why does my level not stay up?
My antiparietal cell antibody test came back positive ....... is that a positive for Pernicious Anemia? Some tell me no, some tell me yes.
I am forgetting alot of questions but will leave it at that for now.
I will continue reading more of this thread :)

Hi, I'm sure one of our knowledgable B-12 experts will hop on board and give you lots of good info.

I can only tell you what I take. I take 5000 sublingually every day. My last level was 2000 and I gather it's much higher now. With absolutely no ill effects. My husband's level is over 3000. He has neuropathy. The Methyl B-12 helped MY neuropathy because I'm diabetic. It didn't do a thing for my husband, unfortunately.

I do not take cyano.I take straight Methyl B-12.

On an empty stomach. First thing when I wake up in the a.m.

Listen to the others who come here and then you can decide for yourself.

Melody

Thank you Melody!!
I look forward to as much info as I can get :)

Yes, I think you should aggressively take the oral. 5mg a day of the methyl on an empty stomach. Obviously the injections are not doing well for you.

In answer to your question about fluctuating levels I think 3 things.

1) Because the injection only lasts in the body for a very short time, getting them every 3 weeks before you are stable is not enough.
This link illustrates the rapid clearance of B12 in an experimental situation.
http://www.ncbi.nlm.nih.gov/pubmed/15730428


2) B12 is stored in the liver. So when you get that infrequent shot, the liver is sucking some of the brief blood levels.

3) There is an active transport system into the cerebrospinal fluid. I works better when the blood levels are HIGH, thereby a gradient of sorts helps get the B12 into the spinal cord and brain. When there is a low amount in the blood, the spinal cord has less to get it needs from. If you take a high dose DAILY, then you will get better serum levels, so your nervous system can heal better. About 10% of the oral dose is absorbed passively in the intestine and daily use will cover the short half life and provide a steady amount of B12 daily, instead of peaks and valleys.

Since B12 is non toxic taking the oral in high doses is not harmful. Just make sure it is on an empty stomach because food interferes with absorption, and you want as much as possible to be absorbed without intrinsic factor. The oral form is not expensive either. Luckily both factors work in your favor.

Once you have damage to the myelin in the spinal cord and brain, it will take a longer time to fix if that is even possible.
Using methylfolate and B6 would be helpful for remyelination, because they work in concert for repair.

Welcome to NeuroTalk.

Thank you MrsD for your response. Your are a wealth of knowledge which is so refreshing!
I have not read the link but have it bookmarked so will do so once I finish with this post.

I found sublingual MethylB12 in 1000mcg. I think I will check out a healthfood store that is close by to see if 5 mg is available. With sublingual tabs do they have to be taken under the tongue or can they just be swallowed for absorbtion?

You mentioned Methylfolate ....... I take 1 mg Folic Acid daily (because of low folate at the time of B12 def diagnosis). Is there is a difference between the two?
I also take 300 mg Ferrous Gluconate x3 daily because of low Ferritin, again found at the time of the B12 def diagnosis.
Just as a side note, I also take Synthroid daily for Hypothyroid.

Off I go to read the link :)

Most stores would not have the 5mg methyl version. It is easily available here www.iherb.com . Several affordable suppliers.
Puritan's Pride even has it now!

There is a genetic error that about 10% of people (and some believe may be higher incidence) that prevents people from activating both folic acid and B12. I have details of that earlier in this thread. (regular folic acid is not active in body).
It is called a MTHFR polymorphism. When people come here with vague neurological problems one has to wonder if they are part of that genetic failure.

Methylfolate is a suggestion, because regular folic acid fails in this genetic failure group. It is available OTC from Solgar at 800mcg and you can get it also at iherb. So if you tested low in folate, you might as well get the methylfolate too. It tends to be more expensive than the 5mg B12.

Hhmmmm.... I was just looking over some bloodwork reports I have. My last check of Ferritin and Folate were in February.

Ferritin ........ 7

Folate ........ >45

The Folate has been the same on my reports since finding out about the B12 def back in December. So my Folate was too high ?? I was reading it as low. I am confused with reading these reports :confused:

My next bloodwork will be the end of November. I will ask to get the Folate and Ferritin checked again.