B12 Question

[blah]

Hi

Recently I've heard more and more about how B12 deficiencies cause/ exacerbate POTS symptoms. 4 years ago I had a slew of blood tests and my B12 levels were one of them - my level was 300. I've read a bit about this and it seems that this is definitely on the low end; however my doctor at the time said that it was all normal and back then I knew nothing about B12, so I nodded happily along. Now I am trying to get a B12 test and an intrinsic factor blocking antibodies test to test for pernicious anemia and it is a bit of a mess. The cardiologist says go for it, but they don't do that there so try the primary care dr. the primary care doctor isn't sure if they can do that because of some insurance nonsense. I've read about how B12 injections are amazing for people with POTS and while my B12 levels four years ago were technically within the "normal levels", it is just barely within normal levels.

I know this is rather longwinded, so my real question is, does anybody have any experience with B12 / pernicious anemia testing? Any tips on how to get your dr. to order this test and/ or give B12 shots?

Thanks.

[forevertired]

Do you have tingling or numbness? Or any of the other symptoms of low b-12 such as extreme lethargy? Do you have any neurological problems, such as paranoia or balance problems? I have pernicious anemia. I had the blood test done for that a few years ago because of my lethargy and numbness/tingling in my hands and feet. Mine was so low that if my doctor hadn't ordered the test when she did, I probably would have wound up in the hospital. I imagine your primary care doc isn't ordering the tests, because if you don't have symptoms or something that justifies the tests, your insurance probably won't pay for it, although I don't know for sure. Your primary care doc might be willing to just test the B-12 as part of an annual physical, if your insurance covers a physical. Then if your B-12 level is low on that test, then your doctor would possibly have the justification for your insurance to do the intrinsic factor blocking antibodies test.

Have you tried explaining to your primary care doc that the last time your b-12 was measured it was just barely normal?

They sell B-12 over the counter in pill form, and many people with pernicious anemia take B-12 in the pill form rather than get the shots. My doctor tried to get me to switch to the pills, but I prefer the shots.

Have you tried taking a B-12 pill daily to see if it helps you?

Do you have a neurologist that you see for POTS? They might be willing to order it. My neurologist when I was younger was the one that ordered it for me.

The problem with B-12 shots, if you don't have a b-12 deficiency, is that folate is included in the mixture for the shot. If you take too many B-12 shots, you wind up with too much folate which can cause a lot of health problems.

Do you have fibromyalgia? Some practictioners who treat fibromyalgia are willing to give their patients B-12 shots.

[Katybug]

I have borderline low. I did the shots for 4 months last year and although my B12 level went up to well over necssary levels, I felt no better. I do now take a oral B12 supp but it does not make an impact either. I know people that it has helped but don't be disappointed if it isn't a miracle treatment.

[jpjd59]

My daughter has POTS and her B12 levels were tested when she went to the Mayo Clinic. Her results were also in the low normal range (low 300s). They suggested that she take B12 supplements. She tried oral B12 supplements but they made her stomach upset. She then asked her cardiologist for B12 injections and the cardiologist had no problem agreeing to try it. She has the injections once a month (she has been doing this for the last two months) and so far she really doesn't see any difference in how she feels.

[JenLR]

I take B12 shots once a week because of my deficiency. I know that a lot of people can really tell a difference with the shots, but I don't notice any change in the way that I feel. I have to get my blood drawn about once a week, and B12 is usually one of the standard tests that they do.

[forevertired]

Jen LR,

I am surprised they measure your B-12 every week. If I may ask, why do they measure it every week? I usually get mine measured every 6 months or so, just to verify that the amount of B-12 I am taking is still correct for me.

I take B-12 shots once a week. I am like you in that I don't notice much of a change in the way I feel. In other words, if I forget to take my shot for a week or two, I can definitely feel that I need a shot as I get really lethargic, but the shot does not do much other than make me less lethargic. I am always surprised when people say that B-12 makes them feel way better, as it doesn't do that for me.

[peregrine]

I got my B12 taken as part of a workup for small fiber neuropathy that showed up on a QSART last month - so we had a symptom and a prior test result, thus insurance didn't seem to have a problem covering it. My B12 was 417 a month ago, and my neurologist (who's a dysautonomia specialist) said it was a fine level. The reference range they gave me was 180-914; not sure to what degree reference ranges really are "normal is within this range, doesn't matter where!" or are "well, try to be in the middle of the reference range, please."

[ramakentesh]

I know numerous POTS and CFS patients that have b12 shots without measurable low levels and still feel benefit.

[Sif]

I got my B12 tested through my endocrinologist because he suspected I was getting nerve damage somehow but I think you can get it through your regular GP. My result came back as around 120ish so I got tested for pernicious anemia and celiac to find out why it was so low. They were negative but I still can't seem to absorb it so I get monthly shots. They don't seem to make me feel much better though!

[issie]

I feel horrible on B12 - it's a potent NO (nitric oxide) scavenger. I need more of that, not less. Low NO's could increase vasoconstriction.

[Linj10]

I was passing out constantly and having dizzy spells, mood swings, and then eventually horrible chest pains. My BP has always been low. Like 94/60, my gp did an EKG and found nothing so he decided to do blood work.

Turns out my b12 was super low. I don't eat a lot of red meat, but that's not the sole cause. My body just does not have the blood volume or desire to be normal.

I was told the pills do not have enough to make a difference and that they're pointless to see a resut with. I was prescribed to take a shot every two weeks but I do it very week.

Without a **** I get horrible headaches, I'm super snappy and cranky, the bad chest pains come back, my head gets foggy, my vision gets blurry, and I'll get real faint.

Needless to say it makes a huge difference in my life and with out that 1ml of b12 I'm no fun

[Linj10]

I was passing out constantly and having dizzy spells, mood swings, and then eventually horrible chest pains. My BP has always been low. Like 94/60, my gp did an EKG and found nothing so he decided to do blood work.

Turns out my b12 was super low. I don't eat a lot of red meat, but that's not the sole cause. My body just does not have the blood volume or desire to be normal.

I was told the pills do not have enough to make a difference and that they're pointless to see a result with. I was prescribed to take a shot every two weeks but I do it very week.

Without a shot I get horrible headaches, I'm super snappy and cranky, the bad chest pains come back, my head gets foggy, my vision gets blurry, and I'll get real faint.

Needless to say it makes a huge difference in my life and with out that 1ml of b12 I'm no fun

[ramakentesh]

My cousin has that type of anemia and has weekly shots.