Recently told b12 deficient... - Pernicious Anaemi...

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Recently told b12 deficient...

bambam85 profile image
8 Replies

Hi, ive only recently been told im b12 deficient. i was at the doctots with a unrelated issue (so im told its unrelated) and after many blood tests have been sent for 6 loading jabs and put on 5mg of folic acid.

Has anyone else felt worse after these injections? i was always tired before all this but now its an effort to stay awake at work and right after the jabs feel spaced out. i feel worse now than went i originally went to the doctors. will this get better over time?

thanks.

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bambam85
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8 Replies
Polaris profile image
Polaris

Just wondering about folic acid. The haemologist in this film states that folic acid should never be given empirically unless the B12 status is normal - it increases the risk of neurological damage in those who's B12 levels are marginal or worsens any existing neurological symptoms.

b12deficiency.info/films

bambam85 profile image
bambam85

the doctor said that the b12 would not work without folic acid as it helps it absorb.

Polaris profile image
Polaris in reply to bambam85

Extract from BMJ research doc. might clarify:

"Treating Noncomitant Deficiencies

"If there is noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord.

In patients with isolated vitamin B12 deficiency and anaemia, additional supplementation of folic acid is recommended until vitamin B12 is replete, to prevent subsequent folate deficiency after replenishment of B12 stores."

cmim.org/pdf2014/funcion.ph...

Marz profile image
Marz in reply to Polaris

...sorry - link didn't work for me ! The gremlins are at work !

shevie profile image
shevie in reply to bambam85

The doctor is almost right, it is necessary but only once the B12 levels are back well within range, as Polaris has said

Secondchance profile image
Secondchance

People often report feeling worse before better on B12. Keep a symptom diary and that will help establish change that may be subtle. If you have neurological symptoms the guidelines all recommend alternate day injections until no further improvement.

bambam85 profile image
bambam85

Ok thank you all for your help. I guess its just a waiting game now!

Gambit62 profile image
Gambit62Administrator

Give it a while and keep a diary of symptoms - can't say that I really noticed a difference until my second maintenance shot - ie 9 months after I was diagnosed, but then that was also the time at which I started to become aware of what B12D really was.

It could be that your potassium levels are dropping - if you had anaemia as a symptom then this is quite possible and tends to happen in the early stages of B12 treatment if anaemia is involved.

Another possibility is that you are suffering from an autoimmune response that means when the B12 levels in your serum gets high your body tries to shut down the mechanism that transports the B12 to the cell level. This means you are left with B12 deficiency at the cellular level even though B12 in serum is high - called functional B12 deficiency.

Others have reported similar effects - particularly the spaced out/giddy . Could be an example of being functionally deficient or it could be something else. One person mentioned that she now has 0.5mg shots and that works better for her.

I suspect that I also have this effect but that for me it is a question of keeping my levels really high so my body can't produce anti-bodies.

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