From the files of the Pernicious Anaemia and B12 Deficiency-Support Group (used by permission)

CO-FACTOR – FOLATE

2. Folate levels must be checked when diagnosed. If you are low in folate, B12 cannot convert, resulting in the B12 injection being useless. If you are deficient, your doctor will prescribe 5mg folic acid usually for a period of 4 months to increase your level. B12 needs a folate level in the upper 3rd quarter of the reference range. If a reference range is 4 – 20 then you need a level of at least 15. If you are self injecting and choosing to inject daily or alternate days, then you must supplement with 5mg (5000 mcg) folic acid daily or the equivalent of 5mg (5000 mcg) folate, daily. This continues until you decrease injections.

B12 injections twice per week require 1600 mcg (1.6mg) folic acid/folate daily. B12 injections once per week require 800 mcg folic acid /folate daily.

B12 injections once every two weeks or monthly depends on your folate level. If you can maintain your folate level in the 3rd quarter of the reference range then you may not have to supplement.

We recommend 5mg folic acid to start with and if you find that it doesn’t work for you then switch to folate. Folic acid is safe, not toxic or poison as may have been reported elsewhere.

OTHER SUPPLEMENTS

IRON 3. – B12 increases a demand for iron as iron is used along with B12 and folate in the production of red blood cells. An increase in B12 results in an increase for iron. Iron in the form of Spatone or a good iron low strength supplement, if you are injecting daily. Do not take any form of iron supplement without knowing what your iron and ferritin levels are. If taking iron supplements then Ferritin levels must be monitored throughout your treatment. Do not take high strength iron supplements for a long period of time unless you are iron deficient and are following your doctor’s instructions. Too much iron can cause liver disease.

4. POTASSIUM– increase potassium intake via diet. Initial intense parenteral treatment with B12 injections will lower potassium levels. Hypokalaemia is the condition that develops when potassium levels drop quickly and can be fatal. However, this is only in the beginning of treatment and usually applies only to those PA/B12D patients who are anaemic and does not apply once you have established your regime of Self Injections.

“Transfusion should otherwise be avoided, unless dictated by clinical, not numerical, considerations. Fluid overload is also dangerous. However, 2 widely quoted reports from a single source linking a unique 14% mortality with hypokalemia during cobalamin treatment for severe anemia reflect an association without causation that should be laid to rest. Plasma potassium often falls transiently when severe anemias respond to cobalamin (or iron), but its clinical relevance has never been proven. I found no early deaths in 101 severely anemic patients with PA who were not given potassium.”