Low B12 and neurological symptoms - Pernicious Anaemi...

Pernicious Anaemia Society

31,927 members23,064 posts

Low B12 and neurological symptoms

Kish2929 profile image
8 Replies

I have started experiencing neurological symptoms from March 2017. My symptoms started with numbness in feet and hands, tremors and muscle twitching. But, I have not been tested for b12 until June 2018 although I have met a neurologist in 2017. My B12 was 76 in June, 2018. My neurologist prescribed me methyl injections of 500 mcg. One per day for 14 days, then one per week for 12 weeks and one per month for life. My B12 raised to 650 in September 2018 when I met a neurologist who asked me to stop injections and prescribed me daily methyl supplements of 1500mcg along with 5mg folate. My symptoms have improved a bit with tremors completely gone and twitching has also improved a lot. But, I still experience numbness and pain in feet and sometimes in hands. My B12 is 1250 now after 3 months of only tablets. What I observed is there's no difference in the improvement of symptoms when injections are compared to tablets. What I believe is I do not have absorption issues. But, as per the neurologist he says that neurological issues could take a long time to heal. I just wanted to know if anyone here have faced similar issues as mine. Also, if the supplements are being absorbed, can I continue taking them instead of injections. I am 31 and do not want to give up.

Written by
Kish2929 profile image
Kish2929
To view profiles and participate in discussions please or .
Read more about...
8 Replies
clivealive profile image
clivealiveForum Support

Hi Kish2929 I remember that you are in India.

If (as you believe) that you do not have "absorption issues" you will benefit from taking the tablets as opposed to injections and this is borne out by your level of 1250.

As to how long before symptoms improve I think you will find the answer to that in the several replies to your previous post.

There is no set time-table - we are all different.

I wish you well.

Rugbyslammer profile image
Rugbyslammer

Oh wow, that’s just my story. I have had really bad numerological pain and twitching in my legs. I’m currently on b12 injections (ten days) then it’ll be once a month. Did you really find that tablets worked just as well? I was told my b12 deficiency was due to malabsorption.

How long do you think it will be before your neurological symptoms go?

What dosage of b12 tablet do you take per day? What brand?

Please keep posting it gives me hope and I know I’m not going Gaya because others understand how I feel. Cathy

Kish2929 profile image
Kish2929 in reply to Rugbyslammer

I take 1500mcg methyl tablets per day.We cannot predict the time it takes for the symptoms to go away, but, we should not give up trying. Btw, what's your age?

Gambit62 profile image
Gambit62Administrator

Kish,

the amounts of B12 you are taking in tablet form are very high. On average about 1% of B12 is absorbed passively outside the ileum so that would mean that on average you'd be absorbing about 12.5mcg in this way - which is 3x RDA - which could be sufficient to raise levels over time.

Your B12 would have been astronomic and off the scale immediately after the B12 injections and had actually fallen to 650 rather than risen.

The levels you are quoting really imply that you do have an absorption problems - and you are just one of those people who can actually get away with tablets as a way of maintaining your levels. As your neuro says, neurological damage from B12 deficiency can take a very long time to heal.

Kish2929 profile image
Kish2929 in reply to Gambit62

Sorry, I did not get you. You meant I had absorption issue? Or I do not have it? Can you please let me know your thoughts on taking only tablets.

Gambit62 profile image
Gambit62Administrator in reply to Kish2929

there are two ways in which B12 is absorbed - the main mechanism (99% on average) is in the ileum. A small amount is also absorbed elsewhere in the gut (Passive absorption). Taking high dose oral is about using passive absorption.

Passive absorption doesn't work for everyone though - probably because 1% is an average.

PA affects the first mechanism.

Kish2929 profile image
Kish2929 in reply to Gambit62

You meant I belong to that 1 %?

Gambit62 profile image
Gambit62Administrator in reply to Kish2929

No, sorry to be confusing.

on average 99% of B12 is absorbed in ileum, 1% outside it. This ratio varies from person to person but it does mean that high dose oral can be an effective way of getting enough B12 for some people if they are taking very high doses, and it looks like you are one of those people.

You may also like...

B12 deficiency Neurological Symptoms

booster. I see mentioned on this site \\"neurological symptoms\\" of B12 deficiency but can...

b12 neurological symptoms

great!! Now, 2 weeks after having my last injection, the hand tremors have returned and the...

Neurological Symptoms of B12

describing are neurological. Symptoms I have which I think are classed as neurological: *Vision...

Neurological symptoms and b12

give me a b12 loading dose. I felt a huge lift in mood and an improvement in the numbness. Last...

Neurological Symptoms - non dietary B12 deficiency

Not long after I started experiencing neurological symptoms. I have had three 'episodes' since...