I have been diagnosed with severe deficiency of B12 a month ago. My B12 level was 95 pmol/l (which is 42.27 ng/ml) and Active B12 level was 18 pmol/l (8.01 ng/ml) .
I presented my GP and Neurologist with slow movements of right arm, right hand fingers and leg. I have sort of little burning sensation in my right wrist, elbow and knee. Also I had disturbed vision.
I feel the constant need to twist my hand upwards (fingers pointing towards the sky) as if I have feeling of carpal tunnel syndrome and ulnar nerve entrapment. Also I have slight tremor in right hand when I open and close my fist.
I understand that I do not have Pernicious Anemia even though I am B12 deficient. If I had PA, my GP and Neurologist would have told me that.
So far I have had four 1000 mcg/ml Hydroxocobalamin (as chloride) injections of B12 - the first 3 injections were at gap of 5 days each and fourth injection was at a gap of 11 days. My GP measured asked me to go for another blood test to measure my level of Active B12 after third injection and the test report mentioned that the Active B12 level is more than 128 pmol/l (56.96 ng/ml) now. The GP said that this can be the maximum level of Active B12 and level more than this is irrelevant. So, GP advised me to have one B12 injection every fortnight or every month. However, whenever I get a B12 injection, I feel much better for next 5-7 days and then my symptoms start getting little bad although the symptoms remain much better than they were at the start of treatment.
The blood test report of Intrinsic Factor is yet to be released and I will share the results soon.
I have following questions:
1. How long should I wait before I start seeing significant improvement if B12 deficiency is really the culprit behind my problems?
2. Is it true that once my Active B12 level has reached more than 128 pmol/l (56.96 ng/ml), I need B12 injections less frequently? I am asking this questionn particularly because I feel much better for next few days after B12 injection.
3. Has anyone else suffering from B12 deficiency felt issues with just one side of body?
Thanks in advance!
Written by
lucldh
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As I understand it, at the moment you do not have a diagnosis of PA yet as that may (or may not - it is unreliable and often needs to be repeated to show positive results) come from your intrinsic factor tests.
To answer your questions:
1) you are already seeing some good results after your injections and with the right level of treatment with B12 and supporting supplements, you can look forward to things gradually improving for years.
I'm sure B12d IS responsible, it's just it takes a long time (many months) for the amount of damage that you have sustained from your very low levels, probably worsening over several years, to be repaired. Don't worry, you will get there!
2) I'm not sure... My inclination is to suggest that no, it's not and usually I think it's best to do your jabs frequently enough to keep your symptoms at bay.
Symptoms are your body's way of saying that something is wrong and so if you are symptomatic then you are deficienct and therefore not healing at the rate you should be.
However - major caveat to what I have just said - I believe that there may well be a huge benefit in not flooding your system (like the standard "loading doses" do), particularly if you have an autoimmune problem, which in some of the us seems to make it go into shock and refuse to work again, meaning that some of us need daily (and more) injections.
If I could start my treatment again I would try the approach of your Drs.
3) It is not common to only be affected on one side (usually the damage is bilateral) but it does get reported and while the whole of my body is affected, it is not affected uniformly.
Another thing...
The "clawing" of your hand that you mention is a classic sign of potassium deficiency and I used to get it a lot - it's weird, horrible and painful!
The processes of cell repair, nerve function and energy release that use B12 need lots of other vitamins and minerals to work properly and without an abundance of each in your body and diet they will become used up, become the "limiting factor" to repair and may show their own deficiency symptoms.
You will probably benefit from a broad spectrum multivitamin and mineral supplement (inexpensive supermarket ones are as good as, if not better than, the more expensive branded ones) plus extra folate, potassium, magnesium and maybe iron and vitamin D. It is worth asking for blood tests to check your current levels of these.
Ideally you will get these from your diet and it is a good idea to look each one up online to see the effects of deficiency and excess and what dietary sources you might like.
If your blood results show a deficiency it is possible to take supplements too but you should be careful as you can have too much as well as too little.
There is more information and links to replies by other helpful people here, in some of my other replies that you can find by double clicking on my name and looking under the heading "replies" but please ask again if you have any further questions.
I hope this is useful and wish you luck with it all.
Thanks a lot for your detailed response! Really appreciate.
I have few more questions for you:
1. Did you have both hands “clawy” or just one?
2. Did your clawy hand reduce your typing speed a lot?
3. Did your typing speed improve by more than 40 percent after B12 shot and then reduce a bit after you are nearing another b12 shot?
4. Did you have little swelling in your clawy hand and the swelling reduced by more than 60 percent overnight after first b12 shot?
Please do not mind my questions as my doctor said that the reduction of my symptoms with clawy hand is coincidental and has nothing much to do with b12 injection. I differ with my doctor though.
I'm really sorry but I was too ill with a whole raft of symptoms, including severe memory problems (input as well as recall) to be able to answer your questions meaningfully. I know I struggled with ataxia (couldn't make my limbs - hands or feet - do what I wanted them to and, as this was combined with neuropathy so I had very little sense of touch, I couldn't really say what percentage was due to what.
I think it was mostly my right hand but they were both affected at different times.
After 4+ years of daily SI I'm better than I ever thought I could be but I hope I'll keep improving (I am at the moment) as I'm still a long way from fully recovered.
I use a 1.5 mg in 1ml ampoule every morning and I take supporting supplements - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium, iron (and vitamin D in the winter) - every day to keep me going.
Yes, those are the two units most commonly used for B12 concentrations, because they give nice (between 1 and 1000) numbers. If you used ng/mL for B12 then you'd get numbers like 0.087 - which aren't so easy to understand.
The normal range will use different units for different things. So the normal range for Vitamin C is 23-114 µmol/L (or 23-114 nmol/mL) which will translate to 4-20 mg/L.
Your B12 levels were very low and it will take more than a few weekly injections to get the levels in the whole of your body up to where they should be.
Once you start injecting further blood tests are meaningless as are your doctors comments about more than 128 pmol/L being irrelevant. Your symptoms are what needs to be treated, not the numbers. Ask for a proper course of treatment.
The nerve damage caused by a B12 deficiency is almost always symmetrical. So what you describe doesnt sound like it's caused by B12 deficiency. Have you seen a neurologist. Has an expert ruled out carpal tunnel syndrome?
Yes saw a neurologist. He said that b12 deficiency can cause Parkinsonism symptoms which typically occur on one side of body. I will see him again after 2 months.
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