B12 Deficient - Newly diagnosed
 

Hi there

I am 3 days diagnosed with a B12 deficiency of 119 pmol/L. I had 1mg of IM Hydroxocobalamin the same day blood results came back and the Doctor I saw advises I will need these monthly for next 3 months then review.

Soooo... I am just now digesting all that a B12 deficiency is, and boy it's a lot to take in, and I find that the internet searches I do mostly seem to be putting fear in me, so I have stopped that LOL, although I have to say I am most grateful that I got diagnosed at all it seems.

It all makes sense to me what I have been feeling these past 6 to 8 months maybe longer, moody, irritable, constantly saying to people "I just don't know what is happening to me". The lack of energy, forgetting things a lot, feeling tired all the time, feeling like I am in a grumpy foggy cloud of just get on with it feeling...but knowing something is a bit OFF per say. I have gone from someone with so much spark, to just running on empty.

I decided that if I went to see a doctor I would be told I was depressed, given a tablet and told to exercise to feel better, but in my heart I knew that what has been happening to me is not a depression, but I could not think of what else it could be, and resigned to maybe it will just all go away.

The reason I even went to the doctor at all at the weekend was I now have numbness in my foot that came on suddenly and bingo - B12 deficient.

I suppose my next step is to find out why? I think there are other tests that I need to ask for. The doctor I saw explained nothing about this B12 thing nor how I have it nor what has been happening to me. I suppose my post today is just to reach out to those who may offer advice and help my mumble jumble mind right now. I would be most grateful to connect to you all.

Take care K

Welcome Kiwigirl,

You'll find a wealth of information about B12 here, and hope. One thing you can do to help yourself is get some methylcobalamin (1-5mg) and take it daily on an empty stomach.

As you read more here, and others contribute to this thread, you'll get a better idea of other tests & things to ask your doctor about.

Doc

PS Check for info on B12 and other supplements in the Peripheral Neuropathy Forum and PN Tips, Resources, Supplements & Other Treatments Sub-Forum.

Hi Dr Smith, thanks for your reply. I read up on here as much as I could find. I have this week been diagnosed with PA, so that is a start. I seem to be lucky enough to have a doctor straight off the bat who seems to know what he is talking about, although it seems a shame I suffered so long without seeking help, and we hope some of the neurological and nerve issues resolve themselves over time, my levels are still only at 119 pmol/L. I'm now on x3 1000mcg a month of B12 shots indefinitely until it gets up there than we review the injections, and getting a double dose of 2000mcg next week as I'm off to the US next Friday.

Once a month shots may not be enough.

That is a really old protocol.

In nursing homes in US when patients (and there are many) are initially diagnosed, they are given shots once a week until their levels
become above normal. In US that is 400pg/ml.

Your test results in pmol has to be converted:
http://www.unc.edu/~rowlett/units/sc...ical_data.html

Which puts you at about 161 US pg/ml. That is really low.
The ranges have been changed and raised, in the past decade, but many doctors are still using the old one, lower ones.

Here is my B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

When serum levels get very low like yours, then the B12 cannot move well into the brain and spinal cord. Damage then occurs there and can be permanent.
Here is a B12 video that is very recent. Please watch it completely. Here in the US testing is poor, and then interpretation is also poor on this subject.

http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

There are recent studies today showing that oral works as well or better than shots. Even for patients with pernicious anemia.
Because you lack intrinsic factor, you need to take a high oral dose daily preferably of the active B12 called methylcobalamin, and only on an empty stomach. B12 in high dose will passively be absorbed enough in the intestine (which is rather new understanding), for even pernicious anemia patients.

This is all explained on the B12 thread.

Kiwi girl, I have a similar problem as far as the numbness and tingling in my toes. I do not lack energy etc., as I still go surfing as often as I can which is a lot since I am retired and there have been many swells this summer. But this problem has affected my stance and is more of a discomfort or irritation than pain per se. I have been on Lyrica and neuronton, seen a podiatrist for shoe inserts and PT. now I am trying the sublingual B12 meth.
My numbness has usually been on the outer toes of both feet and more apparent at nite than in morning. The inserts have helped as I use them in a surf booty as the podiatrist said I have plantar fasciitis but can not explain the numbness. Actually I have no back pain but have read sometimes there is a correlation with spinal problems and nerve damage, like sciatic nerve damage which maybe more of my situation than lacking B12.
I hope your situation is resolved and you get back to your old self.

I agree that monthly shots may not be enough, which is why I suggested taking 1000-5000mcg) of methylcobalamin daily. Even at that only a small amount is actually absorbed, but what does get absorbed is more even/constant than once a month (which looks more like a sine wave).

Doc