B-12 deficiency recovery: good enough?
 

Hi everyone, new here, looks like a great resource.

I learned I was low on B-12 about 2.5 weeks ago (lab serum level was 220). Had a variety of unpleasant neuro symptoms, and crazy energy swings (thought I was hypoglycemic). Came on very suddenly.

Since then I have had 3 shots of cyano B-12, 1000mcg each, 2 in the first 5 days, then 1 yesterday (a week later). I'm feeling good improvement already, but have been having some reactions to the shots - more on that in another post.

My doc now wants me to have shots at 3 wk. intervals for the next couple months, then check my levels again. He thought oral supplements in the meantime were a good idea when I asked, but didn't bring it up himself. He had never heard of sublingual supplements. Didn't ask him about methyl.

He's a good doc in general, listens well. But I don't think he's super clued in on B-12.

My main worry is I don't want to drop back down to the level I was at. Before this last shot I had started to feel super fatigued again, thought maybe my levels have gotten low again? How long would it take to use up the boost given in one of those shots?

So if I get a shot every 3 wks, and take 1000mcg sublingual daily, is that likely to be enough to at least hold me steady, and hopefully build up reserves?

Should I be pressing him to do shots more often? Or test me more often?
I've heard some people get many shots daily, then weekly, until their levels are up.

Also: other than celiac test (negative) he hasn't really seemed too interested in tests to find out why I'm low. Claims that the antibody tests for PA are unreliable. Didn't test me for folic acid, HC, or any of the other related stuff, although plans to do that on my re-test in 2 months.

Should I be pressing to do any of that stuff sooner? Would it affect my supplementation plans over the next 2 months?

Thanks, everyone, for your help!

M.

I get 1000 mcg every 3 weeks and have been for ten years, seems to work well for me.

I do 1000mcg of methyl B12 and 400 of folate in a combo sublingual pill and it works for me.

I think that folate is also important to balance with b12.

I would get an MMA
 

test. MMA is more sensitive and actually tells if you are utilizing B12.

Stop making excuses for your doctor. This is not a hard subject.

I'd suggest you print out this medical paper, and make your doctor READ it.
He owes you and his other patients informed care.

http://www.aafp.org/afp/20030301/979.html

Thanks, everyone for your replies. Still hoping to hear from others as well.

mrsd, thanks for your advice. I don't think i'm trying to make excuses for my doc. He was very straight with me, after reading up on it said "I should've done these other tests (folic acid, HC, maybe MMA) before starting you on the shots".

I understand that's both to confirm that there's a functional deficiency, and to establish a baseline to see if therapy has an effect.

That paper looks great, thanks for the link, but it too recommends the tests be done before therapy is started. Too late for that.

But the fact that the shots almost immediately started to lessen my neuro symptoms seems to me a big indicator that I was in fact deficient, test or no test. Right?

The question at this point is whether it helps at all to do those tests now, after I've already had 3 shots and several oral supplements. He thought the results would be skewed by the recent supplementation and so weren't worth doing.

If you think otherwise, please let me know. I'm very willing to request he do the tests now, if I've got some info to back me up.

M.

My Dr. tested several of his patients and many of the ones he tested had a low or relatively low blood level of B12. I recall that at first he was giving his patients injections of the cyano B-12 and some had bad reactions to it. Perhaps the cyano form is not well suited for certain folks. He then switched to recommending the oral B12 (Methyl type). Some folks take as much as 5000 mcg. Many of his patients are feeling much better and my guess is that they don't miss the shots at all.

Also, please note this quote from the information provided by Mrs. D:
"Because most clinicians are generally unaware that oral vitamin B12 therapy is effective,17 the traditional treatment for B12 deficiency has been intramuscular injections. However, since as early as 1968, oral vitamin B12 has been shown to have an efficacy equal to that of injections in the treatment of pernicious anemia and other B12 deficiency states.9,17-19 Although the majority of dietary vitamin B12 is absorbed in the terminal ileum through a complex with intrinsic factor, evidence for the previously mentioned alternate transport system is mounting."

Esp. since you mention having a bad reaction to the injection, you might to inquire from your Dr. if you can try taking the Oral B12 (Methyl type), perhaps at a large dosage, and then repeat your test (s) relatively soon.

Vitamin B12
 

I'm new to this so hope this is how I reply....I have had the same kind of reaction to the injection minus the fever. had a small bowel resection which is why I need the injection....am hoping that I can take it a different way...any ideas anyone? Thanks.

Hi Elin and WELCOME to Neurotalk!!

I'm sorry I don't have an answer or can't be of much help....
I'm sure someone will be along as soon as they can to help you out.


Please feel free to roam around the board and join in anywhere!!!
Hope to see you around.

:)
Abbie

other forms
 

There are two other forms of injection.

1) hydroxycobalamin -- does not have the cyanide portion

2) methylcobalamin-- usually has to be ordered from a compounding pharmacy.

Some people cannot tolerate or metabolize cyano properly.

How much intestine did you have removed? And what portion?