hi all! I was diagnosed with ME/CFS back in 2016 and had my bloods retested yesterday to rule out any vitamin deficiencies, after never being able to control it. I just got a text from the Dr that I am low on B12 and to buy some B12 tablets or drops, which I’ve done.
How do you find out if your B12 deficiency is caused by PA or something else? Dr hasn’t asked for any more tests just for me to have the levels rechecked in 3 months.
thanks so much for any help 
There are tests for P.A, but often they aren't conclusive. For example, you can have an Intrinsic Factor test, which if positive, means you have P.A., but its only about 50-60% accurate, so you could test negative and still have it.
My sugery have started putting everyone on tablets unless they already have a positive I.F. test, and then review after 3 months. If the levels haven't gone up by then, then they do furthur testing/start injections. It sounds like that is what your surgery is doing.
Unusual for a GP to note low nutrients but he s/he has, so credit to him/her but if it were me I’d want further investigations into PA before starting oral supplementation
Just updating this incase anyone comes across this at a later point. I went private to a B12 and iron deficiency specialist, was diagnosed with B12 absorption issue along with folate deficiency and severe ferritin deficiency. I had an IV iron drip and now self inject hydroxocobalamin. Autoimmune test results should be coming back any day.
Hi AJackson21 , just come across your post and was wondering how you got on with the iron infusion? I'm thinking about this for myself. Did it go well and did you have any side effects? Guess it's too early to know if it's helped considering the other deficiencies you have too?
Hi, the iron infusion went great! I had monofer, it was moderately painful and they had to take a few tries to get the port in but after that it was absolutely fine. Afterwards I felt fine, I had a bit of a temperature / fever for about a week but after that was fine (from what I can tell, I started b12 and folic acid the same day so it’s hard to know but I’m pretty sure all my side effects of the infusion have gone!) interestingly before my B12 side effects kicked in, I had two glorious days where I could actually walk pretty well - previously I was bedbound / had to use a wheelchair. I haven’t needed anything more than a walking stick since a couple of days after the infusion. My knee issues are B12 related but I can feel the effect the iron has had even now on my other joint and limb pain and energy. It’ll be another few months until it’s fully kicked in but each week I feel better than the last
do you mind sending me a PM about where you got iron infusions privately? I also have cfs and low ferritin, glad to hear it's helped you, thank you!
So glad to hear it seems to be having a positive effect, along with addressing the other issues too 😊 The side effects from the iron infusion sound quite common, I have to say they still somewhat alarm me. I react to everything so very nervous of getting one. I'm still trying to raise ferritin levels with supplements but will consider one if I don't get much further forwards in the next 4 months. Please could you be so kind as to PM me with details of the place you went to and also any feedback good or bad?
Well done. . . . . .
others here can help with suggestions on folate dose as well as tips on dealing with iron deficiency.
However it's best to ask a separate question on a new thread. That will give any new q's better visibility.
folate is required for b12 metabolism. So you may be able to decrease your b12 injections down the road but I would wait until all your symptoms are gone which might be a 2 or more years because it takes a while to heal!
Inject daily and don't let anyone talk you into spacing things out. And know there is hope but it takes time to heal. Be good to yourself.
Keep reaching out here! You've found the best source of info and support for b12 deficiency.
And when possible donate to the pernicious anemia society who set up and monitor this forum! They saved my life and many others.
Hi B12life, thanks for your reply! Luckily I don’t need advice on folate and iron, like you suggest I am deficient in both but have been given an iron IV and prescribed folic acid by my consultant. And thank you, right now the reversal symptoms are kicking in after I had a glorious 2 days of being able to walk last week… so the reminder to be kind to myself is useful! It’s a long journey but it’s been a long one to get here with little hope so I am looking forward to each day of healing!
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