Stopping B12: Hi, I want to get an... - Pernicious Anaemi...

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Stopping B12

Ktululady profile image
9 Replies

Hi, I want to get an accurate blood test so I am not going to take my B12 supplements for three months.

It's been a week now and the symptoms are coming back, I am feeling weaker and less energetic and I have a lot of pain in my body especially my back.

Does anyone have any suggestions of anything else I can take to make the next three months more bearable?

I thought maybe caffeine for energy but then I will just feel more tired the next day.

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Ktululady profile image
Ktululady
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Gambit62 profile image
Gambit62Administrator

Caffeine can work as a short term fix but isn't going to get you through 3 months.

Sorry but I really don't think there is anything that you can take - you just need to take it easy and manage the symptoms as best you can.

I feel for you as this isn't going to be easy. Hope you have good family and friends who can support you.

Try to eat healthily - get plenty of rest - get time to yourself - take up meditation or yoga or something similar if anxiety and depression are issues. It can also help with pain as it helps you to separate yourself from the pain - probably sounds like rubbish but if you really understand mindfulness it does work.

It really sucks that this is what you have to go through if you want to get an accurate reading, though I'm not sure really how accurate an accurate reading is when it comes to B12 - particularly the serum as it is known to be a blunt tool at best.

Ktululady profile image
Ktululady in reply to Gambit62

It's just me and my teenage boys, they help a little if pushed :-)

I don't really get depressed, just a little fed up with it sometimes.

I think I'm going to get through a lot of painkillers, which I really don't like doing, but I have to get through work somehow. I tried yoga once and I liked it but he class clashed with something else, maybe I'll look for another one.

I just hope this is worth it in the end.

Hypopotamus profile image
Hypopotamus

It's so unfair that we have to go through extra suffering just to prove a point to the doctors! Last year I was waiting for 7 months to get an appointment with a haematologist, and stopped taking all vitamin B supplements. In the end I gave up waiting and went back to the supplements as I could hardly function at all by then.

When I got the appointment with the haematologist (after 13 months!), he told me to stop taking the supplements for only a week before the blood test, and of course, then told me that my levels were high.

( I heard that you can now become a doctor if you have three Blue Peter badges)

Gambit62 profile image
Gambit62Administrator in reply to Hypopotamus

I think that is doing a disservice to Blue Peter badge holders :)

rockinHippy profile image
rockinHippy

Hi I'm new on here :) & this is my first post/reply, I'm not yet diagnosed as PA, though Im pretty sure it's to blame for a lot.

I do live with the issues you mention though & try to deal with things as naturally as possible for both myself & my nearly 13yr old Daughter, something I have a big interest in, so I think I might be able to offer advice...

Turmeric...

is a great natural pain killer & more, & has been proven in tests to be effective. It wont interact badly with anything else you take. You can buy it in supplement form in health shops or online, but it works best if taken with black pepper. If you buy the spice powder cheaply from an ethnic supermarket & Google a recipe for "Golden Milk" that's an easy way to get both together - it sounds nasty, but it's actually makes a really nice bedtime drink.

Magnesium...

Take a high dose supplement or use a couple of cups of Epsom salts in your bath (or foot bath) daily. Magnesium helps your body deal better with pain, migraine,stress signals & helps regulate sleep & many of us are deficient in it, even with a good diet soil quality crops are grown in, often isn't as good as it should be.

5htp...

This helps with lots of things, including better quality sleep - which in turn helps exhaustion, plus pain & anxiety - check it on drugs.com for any contraindications if you are taking other stuff though.

Malic Acid...

This is meant to help with exhaustion, I've personally not noticed the difference, but know others who swear by it

Aromatherapy Oils (we use these a lot)

Rosemary...

Works for "Jet Lag" so it's a good one to wake you up if you are flagging - it's also been proven in tests to help memory too. Sprinkle on a tissue, or burn in an aromatherapy oil burner etc

Roman Chamomile & Lavender oils are both good for relaxation & sleep

Clary Sage can help with pain & lifting your mood - but don't use every day & take care not to use to much. Also don't use if pregnant or with something like a metal plate or pacemaker as it can cause "rejection" - too much can trigger periods too.

We've recently bought a little gadget called "Actipatch" & it's surprisingly good for localised pain - if you go onto their website they have a £3 trial offer on at the moment, otherwise you can buy it in Boots etc

Hope that's of some help to you

rockinHippy profile image
rockinHippy in reply to rockinHippy

Oh & if you have Wii with the balance board, one of the multi sports packs games, I think the one it came with, has Yoga - you get your own Personal trainer & the is actually pretty good

Ktululady profile image
Ktululady in reply to rockinHippy

Thank you so much, there is loads here for me to try, things I have never even heard of :-)

LadyNZ profile image
LadyNZ

To be honest, I'm not sure that you can guarantee an accurate result whatever you do. if you have bacterial overgrowth of the small intestine, you will get artificially high readings anyway like I do. The serum B12 test can be up to 90% inactive B12. There's no way of knowing how much active B12 you have. I was told you had to be off supplements for 4 months and then request an active B12 test, not the serum one. There is a special name for it which escapes my B12 depleted mind right now! lol.

Ktululady profile image
Ktululady

Yes, I was planning on asking for the active B12 test as well.

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