High B12 (>2000pg/ml) but pain returned in feet

[AbdusSaboor]

hey guys,

I have been deficient in b12 (160 Pg/ml) which I got to know in August 2017 although I had pain in both feet since October 2016 and didn't know the cause. since August 2017 I have been getting b12 loading shots and folic acid tablets along with calcium and b12 oral tablets. Many of my symptoms like heavy pain in feet and burning sensation in my thighs disappeared. I have taken the treatment easy now in February and tried shifting my b12 shot frequency to once in 2 weeks from once a week ( I take methacobalamine in shots and also as oral). however I got my feet pain back around 12 days after the last shot and this is when I decided to take a serum b12 test and the results showed greater than 2000 Pg/ml. and for information I have been taking b12 supplements orally uptill one day before my test although it was 13 days after my shot. Is this normal to have pains returning while serum levels are that high?

[clivealive Forum Support]

Hi AbdusSaboor

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Testing your serum B12 level so soon after supplementing is pretty pointless unless it comes back LOW and it would seem from how your symptoms return between injections that you need to have them more often according to your needs.

Fortunately you cannot overdose on B12 as any excess is excreted via your urine.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

[AbdusSaboor in reply to clivealive]

12 days after a shot is so soon? and my symptoms just reappeared. do the symptoms reappear when injections are due?

[linkerror in reply to AbdusSaboor]

Symptoms keep appearing. I have got 10 loading jabs and then put on tabs since a 2 weeks now. Even though majority of my symptoms have disappeared, I still feel tired all the time. The burning sensation appears for some hours though not as severe as when I was diagnosed as B12 deficient.

I feel anxious and depressed most of the times even when my blood level is 1720 mg/dl. Even though its in blood in high quantity, how much is available at cell level is anybody's guess. After going through a lot of forum threads, I have come to know that on an average it takes 3-4 months to feel fit again post the deficiency and treatment.

I also have mild chest pains which raises my anxiety but such is life. Had multiple ECGs and seen a cardiologist who feels its Costochondritis. B12 played havoc in my otherwise smooth and beautiful life.

Today I completed 2 months of my first jab and still at times feel tired and as if having some infection in my body. Its a long way to recovery sadly.

[AbdusSaboor in reply to linkerror]

sorry to here your problems, stay patient it takes a lot of time and be positive as you have know the cause

[clivealive Forum Support in reply to AbdusSaboor]

Only you can tell what your "needs" are. Loading doses at the start of treatment are supposed to be "every other day until there is no further improvement"

[AbdusSaboor in reply to clivealive]

am out of that every other day phase as I reached the no further improvement state. I used to take shots twice a week untill January

[clivealive Forum Support in reply to AbdusSaboor]

It is also important that your Folate level is monitored as this is essential to process the B12 you are supplementing.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Do you know what your Folate level is?

[AbdusSaboor in reply to clivealive]

I don't yet, but I have been taking folate since 8 months 5-10gms a day

[clivealive Forum Support in reply to AbdusSaboor]

It may pay you to get it tested now as that seems a lot

[AbdusSaboor in reply to clivealive]

sorry. I didnt get you.

[clivealive Forum Support in reply to AbdusSaboor]

I'm not sure how much "5-10gms a day" of Folic acid is. Does gms mean grams? What does it say on the package or leaflet?

[Carole81 in reply to clivealive]

Hi sorry I am new on here and new to vit b 12 injections .can I ask please, this may sound stupid but can your toenails come off with vitamin b12 deficiency, I think I have suffered quite a while before it was discovered that I was deficient, asking you as you have had it a long time and probably have some idea . Thank you

[AbdusSaboor in reply to Carole81]

idk if it is related to b12 deficiency or calcium or d3 but I also have cracked toe nails on both foot since I was a child though I discovered b12 deficiency at 23

[clivealive Forum Support in reply to Carole81]

Sorry Carole81 that's a new one on me.

I suggest you ask that question in a new post and hopefully one or other of the more knowledgeable persons than I on here can give you an answer.

[Gambit62 Administrator]

some people seem to respond to high levels of B12 in serum in a way that severely affects the mechanism that allows B12 in your blood to get into your cells. This means that you don't have B12 in your cells to run the processes that need to run. The easiest way of treating this is to keep levels really high so enough B12 manages to get through. For some of us this means keeping our B12 levels when above the normal range and even well above the measurable range. It isn't the norm but it isn't uncommon. Listen to what your symptoms are telling you and use those to decide how frequently you need injections.

Think that the amounts of folate you are taking are quite large - probably 5-10 mgs. This is an appropriate dosage for a few months to correct a folate deficiency, but is more than is necessary in the long term.

[AbdusSaboor in reply to Gambit62]

thank you for response, and yeah it is 5mg folic acid which am taking only once a day since 2 months

[AbdusSaboor in reply to Gambit62]

hey, how many more shots do I need to.provide my cells? like how will they give me more time in between shots? and are my cells dead? are the getting repaired in anyway how do I know all these?

[Gambit62 Administrator in reply to AbdusSaboor]

B12 is used for processes that run in your cells. Once you get B12 those processes will start running again.

If symptoms return at 12 days that would be the frequency for shots for you.

[AbdusSaboor in reply to Gambit62]

that's a good explanation, but I need to know why is that depleting so fast in cells.

[Gambit62 Administrator in reply to AbdusSaboor]

the levels in your blood don't have a linear relationship to the levels in your blood.

Blood is a transport mechanism and cells tend to grab what they need from your blood rather than having a store inside cells.

Some people react to high serum B12 in their blood by trying to shut down the mechanism that allows the B12 to pass from your blood into your cells. It is more likely that this is now the problem that is leaving you deficient at the cell levels. It means that you need to keep the levels in your blood very high for enough to get through to your cells.

Think of it as the water supply to a city. The city depends on a local river for its water but someone has built a dam up stream. The only time enough water gets through is when the river level at the dam is very high and enough trickles over the top of the dam.