Vitamin B12 ....

[Nikki_55]

Hi...I am new here.. Hello all I have sarcoidosis and recent tests show low in a few things including B12... I had my first injection on Thursday. Last night was the worst i have had in a while, everything hurts.. i was wondering if this is common at the start of injections... Ty x

[clivealive Forum Support]

Hi Nikki_55

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having 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.

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

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

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Nikki_55 in reply to clivealive]

Thank you for your reply. I have been feeling very poorly for a long time. hoping this will help

xx

[clivealive Forum Support in reply to Nikki_55]

Are you in the U.K?

What schedule of B12 injections are you on?

When is your next injection out of how many?

What other test levels were "low"?

[Nikki_55 in reply to clivealive]

I am in uk..

My next injection is due tmoro... I am having 1000 ml of Hyroxocobalamin twice a week for four weeks then blood tests, then every 3 months. I have low vit D and Folic acid too. I dont know the reason for this..if it is connected with my autoimmune disease... i have been ill for 3 years now x

[clivealive Forum Support in reply to Nikki_55]

Has your doctor prescribed folic acid and Vitamin D?

[Nikki_55 in reply to clivealive]

Yes.. 5mg Folic once a day... and Colecalciferol 20,000iu one twice a week for 7 weeks... then told me to buy my own from then!