Very low B12 is often accompanied by high folate readings.

Hi Mrs. D.

A quick question from one of the members of the our Neuropathy Support Group. He phoned me today asking me about B-12. He knows what I take because we discuss it at the meetings. He has neuropathy. He also has Neurofibromatosis.

His B-12 level is 600. He then said "I know I have enough B-12 because I go in the sun quite a bit. I then corrected him on that assumption. Since he knows what I take he is thinking about taking it also. I don't think he knows his folate level. I'll ask him when I contact him. He said to me "I am on Triflex for cholesterol and Synthroid for Thyroid, can I still take the B-12? And how much folic acid should I take?

I told him "I have never heard of anyone have any ill effects from Methyl B-12, or if it has any contraindications, but just to be sure, I'll ask Mrs. D".

So I'm asking.

Thanks much

Melody

Are you sure about that drug? Triflex ??? Triflex is a glucosamine product for joints.

There is a TriCor for elevated triglycerides.

There is TriLipix....which is a statin Crestor mixed with Tricor.
Statins=neuropathy risk.

He has more problems than just B12 IMO. Most people get enough folic acid today in US because we have fortified foods that contain it. He should get tested.

First off this gentleman needs CoQ-10 because of the STATIN he takes. Also acetyl carnitine at least.

And yes, get a Vit D test.

He sounds rather confused, and statins contribute to that.
He needs to check Dr. Graveline's website,
www.spacedoc.net
Dr. Graveline lost his memory on Lipitor (STATIN) and wrote a book about it. "Lipitor, The Thief of Memory".

In regards to B12, some people with rather normal B12 levels, could have neuro issues. This is because people vary. It is less common than when their levels are lower, but it can happen.
Please, read that article I posted in this thread.
http://neurotalk.psychcentral.com/post698522-70.html

MrsD..... about the MethylB12 5000 mcg, you had mentioned Puritans Pride ?? I am not familiar with that. Is it a store?

Also, I was thinking, if my Folate was >45, which is high ........ why would the Neurologist prescribe 1000mcg Folic acid daily??

Referring back to one of my earlier questions about Pernicious Anemia..... having tested positive for antiparietal cell antibody means a diagnosis of PA??? Or are there more tests that go with it?

:)

Hi Mrs. D. I have written to him to get the correct name of the meds he is taking. Thanks much. Melody
Next week is the Neuropathy Association monthly meeting.

Mrs.

I was able to get the correct name of the medication that my friend is on. He only takes two meds. He is on 135 of the Trilipix (for cholesterol) and he takes synthroid for thyroid.

I asked him what his last B-12 level was and he said "Well 6 months ago it was 600. He has NEVER had his Vitamin D level tested (as far as he knows). And when I suggested that he get it tested he said "Well, I'm due to go in March for blood work and I can't go sooner because of the insurance co-pay.

So I gather he wants to know how much vitamin B-12 he should be taking, and how much Vitamin D3 he should be taking. At least until he gets another blood test done.

He takes no other meds at all. Nothing for neuropathy and nothing for Neurofibromatosis.

I just wanted to get you the exact information.

Thanks much

Mel

Without a D test, the recommendations today from doctors, specializing in D stuff is 2000IU D3 daily.

He could start the B12 aggressively at 5mg a day for 3 months, and then drop back to 1mg daily (on an empty stomach).

But it is that Crestor that is in the Trilipix that is worrisome.

That drug depletes CoQ-10 and he should be supplementing at least 300mg a day of that of a quality enhanced absorption type.
Also read my thread in the subforum about statins.

If he refuses to learn about it... then he should try adding acetyl carnitine to his CoQ-10 and hope for the best.

That statin in the Trilipix is highly problematic for someone already with neuropathy.

mrsD, I looked mine up from last wek and it showed B12 at 331,, so I guess were talking low and what supplement should I take,,, I have SFN that is spreading quickly,,

5mg of oral methylcobalamin daily on an empty stomach.

This is because you have symptoms considerable.

I would get the Vit D tested too.

But other things may help you too:

Acetyl carnitine
Benfotiamine
Lipoic acid

All of these help with mitochondrial functions.

Hi Mrs. D. Just wanted to update you on my friend from the Neuropathy PN Group. He has gone for a blood test and among what they are testing for is B-12 and Vitamin D.

So we shall find out when we find out!!!

thanks much

Melody

Is Vitamin D availabe OTC ?,, I swear I am just coming apart daily,, every nerve in my body feels like a live wire,, the tremors are getting worse, but blood test show no increased SED rate,, CPK is in normal range, 99 on a 0-200 scale, I dont know what my D level is, it was low in the past, thank you mrs D,, your very knowledgeable

Yes, D3 is OTC... pick a capsule version, or liquid so it is absorbed better. (I don't think the dry ones are absorbed as well)

There are many many available now:
http://www.iherb.com/search?kw=d3#p=1&sr=0

If you know your D3 level, use 1000 IU / 10ng increase to figure out your dose. The research says most people can take 2000IU safely without a test. But if you don't get any sun at all, I'd start with the newer 5000IU daily.

Both hubby and I use the 5000IU in fall/winter/spring and none in summer.

B-12 Readings
 

I am wondering what to make of these B-12 blood test results. All taken this year. None of the doctors i have seen have any idea. they all think the 2nd reading was a mistake, but i figure if i was taking 20,000 per day for three weeks it could well have been correct. Since the Nov 23 test i have started on 5000 a day again, on an empty stomach.

My main interest here is that even though I was consuming 1000mcg per day for the past six months, the level has dropped. Any insight would be much appreciated.

March 17............162 pg/ml
Started talking 20,000mcgs per day. sometimes without food

April 7 ................5297pg/ml
Took 1000mcg per day with food (a different brand)

June 2.................879pg/ml
Continued taking 1000mcg per day with food

November 23........849pg/ml
Started on 5000mcg per day again.

We had a poster here, and I have seen on the net a couple of times comments from a lab technician in the US that most testing places (at least here) cannot go up past 2000.

What may have happened to you is that when you started, with that 20mg daily, you flooded the serum, which then went to storage both in the liver and spinal fluid, and when that was normalized, your readings dropped. If you had depleted your liver and CNS you would have had symptoms and been in a bad way. It takes time to recover the levels in those two places.

Many informational sites say that our livers' if in good shape, can store enough B12 to last 5 yrs. This is because we evolved in an ice age where food was hard to get sometimes. Being hunter gatherers we had lean times and rich times.

thanks mrs D.

what do you think of the fact that the level has dropped even though i have been taking 1000mcg's per day over the last six months?

does this mean that none of it is being absorbed.

a gastroenterologist i saw said it was too late to find out why my b-12 count was initially so low, because i had already started supplementation.

is he correct?

Yes, basically if you get that low there is only one reason...
failure of intrinsic factor.

Readings in the 800's are not that bad. Sometimes the real answer eludes us. Just do what you need to do. I think 5mg daily is plenty, for most people.

See what happens over 3 or so months.

question for Mrs. D or someone else with knowledge on the matter of B12 testing
 

Hello, no one seems to have posted here for a while, but I'd like to ask a question here as it seems to be the appropriate spot.
My Primary is going to test me for my B12 and D levels when I have my physical in January. (about 1 month from now.) I have been taking a B complex and multivitamin as well as a few other supplements for two years, and D3 since this summer, and it does not seem to relieve symptoms of peripheral neuropathy. I am wondering if the supplements can mask a b12 deficiency when I am tested? I read somewhere that Folate in the supplements can mask anemia while neuropathy progresses. Should I stop taking the supplements in the month leading up to the test? Or should I just continue and thereby know whether I am absorbing the vitamins or not?

Most B complexes have B12 in them. A very small amount. If you have intact intrinsic factor, you will absorb this B12. If you do not (due to autoimmune disease or genetic failure) the B12 in it will not be high enough to be passively absorbed (like other things are). In cases like this where folate is eaten (fortified foods) or in vitamins and B12 is low, there can be warning signs in the blood work. An elevated MCV may be present before anemia starts. From what I have read, one does not have to have frank anemia to be low in B12.

Some of the Bcomplex is very rapidly removed from the body thru the urine. Most people can smell this and see a greenish yellow color to show the complex was "absorbed" from the GI tract. However, B12 does not give this sign. Regular Thiamine, B2, and B6 can do this however. Being absorbed is not the same as being "utilized" by the body once absorbed. The cyano form present in most vitamins, has to be converted and methylated to active methylcobalamin before being able to work. Some people cannot methylate because they lack genetic capability to do so. This is called the MTHFR mutation, and when this is present (about 10% of people), folate and B12 cannot work for you.

So the bottom line is -- I'd stop the vitamins a week before the testing. Since they appear to not be working for you anyway, you should not experience any changes.

I think you can stop your B-complex a week before the testing.
If you are absorbing the B12 because your intrinsic factor is working, your blood levels will not change much. During testing one does not want the immediate amounts of this vitamin showing up temporarily in the blood from a supplement (or injection) to confound the results.

It is true in very low B12 patients, the folate will mask anemia.
Neurological symptoms may be due to low B12, or other triggers. Doctors who use "anemia" as a sign of low B12 miss about 80% of the cases that have neuro problems without showing this symptom. Texts that they had in school which are old, use that criterion. This paper, written in 1999 , suggests that even people with fairly normal B12 levels there can be neurological problems that require more than normal intake:
http://neurotalk.psychcentral.com/post698522-70.html

Thanks so much for these clear explanations!
 

Mrs D, Thank you so much for your fast response with such clear explanations!
I appreciate your advice and will stop B12 a week ahead of the blood draw as this makes a lot of sense now. Thank you also for the link. I am going to go read it right now.

A little off topic.... but still B12 ...
 

I took my new kitten to the cat specialist vet the other day, in preparation for a spay procedure later in the month.

While I was there an owner came in to pick up B12 injections for her cat. I was very curious, and we got to talking.
Her cat is 14 yrs old and has pancreatitis. She picked up 6 doses for $12.

I asked the tech later about this, and she said that foods high in carbohydrate tend to inflame the intestines of cats, causing B12 deficiencies! (sounds like gluten intolerance!) So this practice uses B12 injections commonly for digestive issues! So in other words they discourage kibble there, and suggest only wet food, and food you may cook for your cat!

I was very interested in this! It illustrates how diet, and environment can even impact your pet!

Vit B12 and Vit C shots
 

My B12 score was 140 pg/ML when I got tested in January (thanks for prompting me, mrsD!). I recently started on B12 shots; my GP recommended three shots a weeks over 8 weeks initially. She thinks I might have a problem with intrinsic factor and I also take meds for my GERD which can hinder absorption of B12 (thanks again, mrs D!). Now, because of my GERD, I can't take too much citrus fruits or vitamin C orally as my stomach will bloat. I'm thinking of getting vitamin C shots once a week at the same time as my B12 shots. My GP says she can administer them intravenously and simultaneously. My question is: can vitamin B12 interact with vitamin C negatively if administered this way?

Well, when you take your oral B12, you need to take it alone on an empty stomach.

As far as Vit C goes, try the Ester C. It doesn't affect the stomach the same way as the plain regular does.

140 is really low. I hope you do 5mg of methylcobalamin for at least 3 months daily. When you are so low, the levels in your spinal cord and brain go way down too!

You can get good levels with oral if you do it wisely.
The shots are not methyl form either.

Thanks for the prompt reply, mrsD.

My B12 shots are methylcobalamin. I'm still waiting for my Jarrow Formulas 5000 mcg to arrive as I'm currently working in a developing country with a rather bad rep for credit card fraud and iHerb has had to do some verification first hence the delay. They do deliver internationally though and you would have no problems if you were living in a developed country.

Good... I'd stick with methyl B12 because you don't really know what is causing your problem. Maybe you have that MTHFR genetic error, which fails to methylate cobalamin and activate it.

I'd avoid cyanocobalamin because you just don't know why you are so low, and there has to be a reason.

Just to be clear: Are you saying that you need to take B12 on an empty stomach with no other supplements? Or is it alright to take B12 with other supplements that need to be taken on an empty stomach?

I am currently taking B12 and Acetyl L-Carnitine on an empty stomach at the same time.

Thanks!

If the supplements are fiber containing... I'd not take them.

If they dissolve well, it is okay. Fiber specifically absorbs the B12 like a sponge and prevents absorption.

Calcium and magnesium are also suspect because some studies show they interfere with thyroid hormone. Calcium is divalent and tends to complex things into insoluble form...so I don't know if it would do the same to the B12. Until we get that new promised enhanced absorbable one I think being very careful is best. If you have intact intrinsic factor, this situation is less critical as the intrinsic factor will combine with the B12 in the stomach and enable absorption of it. But when people come here with LOW test results one has to assume that things are not working well for some reason. So prudence should be practiced for success. Now if you take your B12 a specific way and get tested in 6mos and show good levels, then that is the way for YOU... testing is the only way to show what is working the best for you.

For example my doctor expected much higher Vit D levels for me, based on my intake. And they were not there! (for whatever reason). Testing revealed that.

i have pernicious anemia and have been taking b12 shots. I decided to start taking sublingual b12 tablets. I just ordered 1000 mg....is that okay? I plan to take them every day and then be tested in november
bobby

1000mcg is low for a seriously pernicious patient.

If you hadn't ordered them already, I'd suggest 5000 to start daily. This is of the activated methylcobalamin type for best results.

Also you should take that on an empty stomach. Under the tongue is not necessary, but food will impair absorption.

Why don't you start at 2 tablets daily.

i already ordered the 1000 and just looked at iherb and only saw 3000 mg and no 5000...ugh...do you mean take 2 1000 a day?
bobby

Yes, take 2 a day for a while.

Ideally it would be 5000mcg/day for 3 months or until your blood work comes up.

Only about 10% gets absorbed you know.

thank you so much
bobby

I ordered 5000 mg from vitacost. thank you again
bobby

My Jarrow Formulas methyl B12 arrived yesterday (yay!) and I've started taking it. I suck on it but I find it makes my tongue a little sore. Any suggestions, mrsD?

Also, what's the difference between methyl B12 and the dibencozide formula? I remember you writing about it somewhere; I'm a little lazy to look for it. :D

You can chew it up and swallow... it will be absorbed about 10% in the small intestine.

Just make sure there is no food around...so take it first thing in the morning, and wait an hour or so for best results.

I don't believe much is absorbed from under the tongue. That is an old prep, and still hangs around.

Mcv
 

This is an important point. Mean corpuscular volume (MCV) is a measurement of the average size of your red blood cells (RBCs). The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in people with vitamin B12 deficiency. My MCV has been on the high side during my last three physicals and only the doctor during my last physical noticed this, retrospectively after seeing my very low B12 count. I'm not anaemic but I do have neurological issues - my consistently elevated MCV should have been a red flag given my neurological issues.

MCV is a test which is routinely done as part of your CBC (complete blood count) and if the number is too high or too low, it is an indication that further testing might be required. When the MCV is decreased, your RBCs are smaller than normal (microcytic) as is seen in iron deficiency anemia or thalassemias.

I found this post through searching the internet and have a couple of questions:

Can someone with a b 12 serum level of 550 experience symptoms?
I am a vegetarian and over the last year or two year I have been tired (kind of zoned out like my body is disconnected from my brain), muscle twitches, stiff neck and shoulders, vibrating/tingling in my hands, nervous easily)

In the beginning of November after a very stressful time in October I began to have stomach problems (nausea, burning stomach, burping, throat tightness). The doctor diagnosed me with gerd. I tried to explain that I had never had stomach problems in my life. He prescribed prilosec, but it did not do me any good. I was then tested for h. pylori but that came back negative. Additional blood work showed that I was not anemic or diabetic. My MCV is at 94 (I looked back at old blood work and it looks like my MCV is something that continues to go up). During this same time, I also began to have bad nightmares where I sit straight up and/or, breathing heavy, heart racing absolutely in a state of panic.

Out of desperation after coming across an article that mentioned GI problems with b12 def. I asked to be tested this month. I was told the 550 was normal. Now for my second question in regard to the test. Because my stomach has been so bad, my diet has changed drastically (starting in Nov). I began drinking more milk, eating chicken noodle soup 3 to 4 times a week (trying to avoid the chicken, but I know I am eating some of it), eating 3 or so slices of multi-grain bread fortified with b12 during the day because my stomach worse when it is empty.) Could this change in diet, have affected the blood test results since it does not reflect my state at the time when all of these symptoms developed?

Any insight would be greatly appreciated.

Hi, My name is Melody. your B-12 level is TOO low. Mine is 2000. Doctors do not know anything about nutrition. They practice medicine.

I can only advise you on the one way of eating that benefited my life. I turned to sprouting. Go on the internet and google "benefit of sprouting".

You're a vegetarian so you are perfect for this food. It is GREAT for people with sensitive stomachs. I sprout broccoli (no gas by the way), alfalfa, fenugreek and radish sprouts).

I have zero gerd, stomach problems. I go to the bathroom every day. It's the best thing I ever did.

Stop with the chicken noodle soup. Stop with anything processed.

You want to put live, good stuff in your body.

That is however if you are SERIOUS about your health.

I was and I am.

Melody

Yes it is possible but not common to have neuro symptoms with a 550 reading. In this thread is a copy of Dr. Snow's comments on neurological symptoms with B12 levels that appear normal.

So look back a few pages to that entry.

Vegetarians can be low in other things too. Zinc is one, and so is the amino acid methionine.

However, eating beans and other veggies can give good levels of magnesium.

Potassium however, could be low, and you can be tested for this.
Meat is a main form of potassium in most diets and vegetarians miss that.

I'd get tested for Vit D3. Low levels of this can create problems, and is quite common.

An elevated MCV is often one sign that B12 may be low. But that is not cast in stone either.

You may also want to look at gluten intolerance. This can cause neuro symptoms too. And you may be eating alot of it on your diet.

Ok. Thanks. My main problem is the tiredness and now the stomach problems that have basically just appeared over night after that stressful experience. I was hoping they would go away, but they just seem to continue to hang around.

My potassium was tested and it is 3.7 with a range of 3.3 to 5.0.

Some others:
Calcium is 9.3 with a range of 8.6 to 10.5. Protein is 6.9 with a range of 6.3 to 8.3.

Hi, me again.

If you take Methyl B-12 it just might perk you up a bit. I have two friends who were always tired and their B-12 levels were in your range. I told them what I take. I told them where I got it and they began taking it also. You should see the change in them. One of them was slightly anemic also. Even taking iron didn't help her.

She's a new person now that she is taking Methyl B-12.

It gets confusing I know with all these vitamins and supplements, etc. Mrs. D. knows her stuff.

That's how I learned what I learned. By coming on these forums and reading.

Changed my life BIG TIME.

I wish you well.

Melody