Sooo where do I return this banjaxed ... - Pernicious Anaemi...

Pernicious Anaemia Society

32,628 members23,990 posts

Sooo where do I return this banjaxed body of mine?

MariaMe profile image
6 Replies

Hello knowledgeable B12 folks!

I have been dealing with what I believe is B12 deficiency for a couple of months now. I'm vegan and have been deficient a couple of times in the past. Doctors can't find anything wrong with me. I was taking B12 for a few days before my first test in November. Then I was off them until the first week in January.

My results went from 800 to 400 in 7 weeks. I presume this would be expected having stopped the supplements? I know from having done some reading that this reading still might not be accurate.

My doctor tested a whole bunch of things and everything came back normal. Including anti-intrinsic and anti-parietal antibody which he did just to be safe.

I am really breathless with a fast heart rate and a lot of burning nerve pain in my feet and just finding it hard to walk now. It's awful. I've been taking sublinguals for a few weeks now the testing is over and I don't feel any better for it.

I see my doctor tomorrow and I will discuss this with him again. Can anyone just give me encouragement? I feel like I'm facing an uphill battle trying to get him to consider what I'm saying. It still could be B12 right I'm not just going mad?

I am considering just buying some injectable B12 and seeing if one of those might actually give me some improvement! But the idea also seems really out there!

Thanks for any replies. Please be kind. I'm really feeling down and out.

Maria. x

Written by
MariaMe profile image
MariaMe
To view profiles and participate in discussions please or .
Read more about...
6 Replies
fbirder profile image
fbirder

Get back to the oral supplements.. If your level was 800 then you're obviously absorbing it. It doesn't matter if the result was out by 20%, it's still over 600, which is more than about 75% of the normal population.

I would try 100 mcg of cyanocobalamin three times a day. amazon.co.uk/Vitamin-Tablet...

There's no point in a higher dose as you can't absorb more than about 10 mcg at a time. There's no point in other types of B12 as they are all equivalent once they get into the cell. There's no point in sublinguals because they're just absorbed after they get swallowed.

Try that for three months.

If it still doesn't get rid of your symptoms try a test for MMA and/or homocysteine. These two chemicals are used up in reactions mediated by B12. If there's lots in the blood but it's not getting into the cells then both of these will be raised.

If, after three months your B12 is sky high, and your MMA and hCys are both low, then it looks like your symptoms aren't caused by B12.

Nackapan profile image
Nackapan in reply tofbirder

If your b12 is high in your blood but not getting to your cells. I.e iff a high MMA and homocysteine level.

What do you do to get the b12 into your cells where you need it?

I've never had the MMa test

Nackapan profile image
Nackapan in reply toNackapan

Or homocysteine blood test(sorry test jumping h

YogiGreg profile image
YogiGreg in reply tofbirder

Agree with fbirder. I'm veggo and take 100mcg (cyanocobalamin) twice a day every day to help with my deficiency after initial injections. Plenty of improvements after 10 months. Eventually will take this down to 50mcg twice a day once improvements have stopped. Kinda prefer taking supplements to injections as it keeps my symptoms more stable and consistent with occasionally increasing supplementing in times of higher stress, workload or physical fitness. :)

Improvements take time, so a few months (rather than a week or 2)of oral supplementing will give you time to recognise if you are feeling any changes.

Marz profile image
Marz

Important to obtain copies of all your results with ranges so you can monitor your progress and make posting here easier. Many surgeries have on-line access to records so worth checking. I believe Enhanced Access is required to view results

As your B12 is low then I would also check Folate - Ferritin - VitD. If Ferritin is low in range then request a full iron Profile. All - if low - can be a cause of fatigue.

Nackapan profile image
Nackapan

You need supplements for life with a vegan diet. Esoecially as you get older. You are a absorbing g from a tablet - that's great. Like others have said get everything g tested to rule things out. I personally would wait before turning to Injections.

Not what you're looking for?

You may also like...

Where do I start?

Hello, I have been reading over many of the posts and would love some direction. I am a 36 year...
ilfc profile image

Eeek...Where do I go from here?.. totally unexpected B12 test result...

Well this is my latest news and problem... I have been suffering from symptoms of B12 deficiency...
Cybrook profile image

B12 Levels How quick can they fall?

Some quick info... I was diagnosed with severe B12 deficiency last year with a test reading of 94....
cfc_b12 profile image

How do I decide frequency of injections?

Hi I've been on here a couple of times now and benefited from advice. I've had monthly B12...
LizWilsonpa profile image

Worried - Problems Reading/mild Dyslexia-like symptoms?

I'm really worried about this because I still don't know for sure if it could be a problem with B12...
Dorus profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.