Additional supplements ?

[Recharged]

I have finished my loading injections and I am awaiting results on if my body has accepted the b12 or if I have pernicious anaemia. I was just wondering about some comments I have read about taking additional supplements alongside the injections such as folic acid. Could anyone enlighten me a little about this please.

[fbirder]

If you have PA then it's likely that you will also have problems absorbing other nutrients. Specifically folate, iron and vitamin D.

Supplementing with folic acid is fine as long as it's only 200 to 400 mcg a day. If you have your folate levels tested and they're in the normal range then you shouldn't need folic acid at all.

All women of childbearing potential are advised to take 400 mcg a day of folic acid to prevent possible neural tube defects if they become pregnant. These defects occur very early in pregnancy, before a woman even knows she is pregnant, so they need to be taken all the time.

The NHS recommends that everybody take low-dose vitamin D supplements during autumn and winter. It's difficult to find such low dose in supplements. Go for the lowest you can get.

Don't supplement iron or potassium unless advised to by a doctor. Too much isn't hard to achieve and may be harmful.

[Cherylclaire Forum Support]

Given what f-birder has said in response, it would be best for your GP to check these levels and monitor any that might be below range or low within the range.

My folate and ferritin levels were not below range, but were low. GP picked up on this when B12 deficiency was being treated, but my hair was still falling out and gums still bleeding. I had 3 months' supplement for both and the situation improved. Then both dropped again. It all takes a while to get to a good level and stabilise there, and close monitoring certainly helps until then at least.

Vitamin D problems were picked up when I had a Dexascan for bone density and was found to have osteoporosis of the spine. This scan was only done because I had broken a bone in my shoulder, and fit into an age category (50+ possibly ?) - so I was lucky.

So you can see that, rather than rely on chance, a thorough blood test would be useful early on - if only to tell you that you are okay on all these fronts !

Let's hope so.

"....I am awaiting results on if my body has accepted the b12 or if I have pernicious anaemia..." :

If I have understood you correctly, it seems that your GP is testing you post- loading: if the test was a serum B12 blood test, it is highly likely that s/he will find that your B12 level is now high. This does not rule out B12 deficiency due to pernicious anaemia; it will just prove that if you put a lot of B12 into a patient, you will find the patient contains a lot of B12 !

There is no point at all in testing serum B12 levels after injections have been administered- which is why medical guidelines advise against this.

There is currently no totally reliable test for pernicious anaemia and currently no cure either. B12 injections are there to help you manage your symptoms and prevent any further deterioration, which is why people with PA need injections for life.

[Miss-guineapig]

For me folic acid takes a different route, and the wonderful thing about this site, is that people have a lot of knowledge and appreciate also that we have individual needs. When I was first diagnosed I needed 5mg of folic acid for 4 months. After reading recommendation on this site, I spoke in depth with my GP and the pharmacist, I had blood tests etc and still require 5mg every second day now. So I obviously have a true absorption issue, in addition I have injections 4 weekly....which is made up of 8 weekly prescriptions from my GP and I supplement with bought vials from Germany in between (which I choose not to share with my GP). I am doing ok, have intermittent symptoms e.g. Brain fog, occasionally tingling, low mood but I am generally well in the big scheme of things, but that has taken time ...nearly two years now. It's always like a roller coaster, you think all is good then it's not for another wee while, but hang in, good days do come. Wishing you well too recharge x