PALVE: I’m about to start b1... - Pernicious Anaemi...

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Palum profile image
6 Replies

I’m about to start b12 injections alternate days for two weeks then every 3 months. I appreciate this isn’t enough for neurological problems which I have. Should I ask for blood tests for folic acid before I start and then take every day .. and for how long?

I’m not going down the path of SI for lots of reasons but want to know what I’m doing to start?

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Palum profile image
Palum
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Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

I left info which may be of interest to you in the thread below yours "Autoimmune Liver Bloods".

More B12 info in pinned post "Various PA/B12D resources".

Kittykat50 profile image
Kittykat50

Hi Palum.

When I started my B12 they give you 3 boasters to get you up and running

You will feel so much better once you've started getting that B12.

I'm so glad as you'll will feel on top of the world soon.

Plus you will know when it's due as you start feeling tired and lathering.

Take good care.

Kitty x

am111 profile image
am111

I assume this is being given by the doctor. A much better schedule that I have found is to gradually reduce the gap between the injections. For e.g. increase gap by 1-2 days every time so that the final gap between the injections is something like 10-15 days. Then, you might be able to stop them or increase to 1-3 months.

If your doctor won't do it and you don't want to go this, wroute, I suggest your supplement with an oral in between those 3 months. In studies and my experience, cyanocobalamin tablets work while methylcobalamin tablets also work for some but did not work for me and the clinical trials are limited. 1000-2000mcg/day is recommend as an oral maintenance dose.

Your neurological symptoms will improve gradually if your B12 levels are kept normal, whether by injections or orals. Generally, injections are recommended as orals take some time to kick-in during which time your symptoms may even get worse or not improve much.

Palum profile image
Palum in reply to am111

Because I’m coeliac the cyanocolbamin tablets aren’t as good but I have the others to boost the b12 in between injections.

Do you believe in taking folic acid tablets at the same time, and if so, do I need to ask drs to do a regular blood test to check levels?

am111 profile image
am111 in reply to Palum

As per studies, cyanocobalamin tablets work for all but I have found that some brands for some reason don't work as well while some others do. Which other tablets do you take? BTW, only 1.2% of an oral dose is absorbed by passive absorption for those with absorption problem, so a 1000-2000mcg dose will give you around 12-24mcg/day which is a decent amount but takes 1-2 months to really kick-in. Anything less than 1000mcg will not get absorbed sufficienty for you to make any difference.

Unless diet related, people can have both folate and B12 deficiency, most commonly due to thyroid issues. Several B vitamins work together to (re)build nerves, so it makes sense to take a B complex tablet, at least till your nerves are healing. For folate, the recommendation is to take 5mg/day for a couple of months after which 400-800mcg/day will be generally sufficient. Also eat well so your body is getting sufficient nutrients for rebuilding the nerves. If you can get the folate test, great, but you should supplement regardless of the result till your nerves are healing.

I am vegetarian and have plenty of fruits and vegetables, so other vitamins are not low for me but B12 was the first to get affected because of my thyroid issues. If you have thyroid issues, you should also get your iron levels checked.

Palum profile image
Palum in reply to am111

That’s helpful. Thank you

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