B12 levels- low or normal?: Hello Both... - Pernicious Anaemi...

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B12 levels- low or normal?

LACGlos profile image
7 Replies

Hello

Both my mum and my Auntie have pernicious anaemia, but so far I have not shown the antibody in my test results.

Since 2011, I have had drops in my b12 levels and have had to have injections. It started every 2 years, then went down to every 1 year and I now have the symptoms 7 months after my last injections.

Due to changes at my GP surgery I have had to see a new doctor and she said my b12 level is 248. I told her I have the pins and needles, headaches, palpitations, confusion, poor coordination, fatigue and dizzyness I always get but she didn't seem willing to take my past medical history into consideration at all, just kept saying levels are fine, it must be your anxiety. I can't see my usual doctor, no appointments. I'm worried about neurological damage.

Has this happened to anyone else?

Thanks

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LACGlos profile image
LACGlos
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7 Replies
fbirder profile image
fbirder

Write a letter to your normal doctor saying you are worried about permanent nerve damage.

LACGlos profile image
LACGlos in reply to fbirder

Thanks, I have written it and sent it off. Can only wait now 😓

LACGlos profile image
LACGlos

Yes, I am in Gloucestershire. I have written my letter, just have to wait now I guess. Thanks though.

dingusgirl profile image
dingusgirl

I just found out a week ago that I have Vit D (26) and vit b12 (288) levels. I’ve only since been supplementing. The first 2 days I felt better than I have in a while. But the last 2 days are back to before I even started. Dizziness, lightheaded, off balance, fast heart rate when moving around, disoriented, and poor concentration. It’s driving me nuts. I have MRI scheduled in 3 days. Hope to get cleared from that so I know it’s just the deficiencies.

LACGlos profile image
LACGlos in reply to dingusgirl

Are you supplementing by taking tablets? That's something else that worries me. I eat so much food with b12 in it, including Marmite on toast for breakfast every morning. My doctor says that they are moving away from injections to tablets and I don't understand how my stomach can absorb from a tablet if it can't absorb from food. It's driving me nuts too. I have a job where I have to be able to concentrate 😥

dingusgirl profile image
dingusgirl in reply to LACGlos

I am supplementing with tablets. The b12 are dissolvable that you put on tongue. I haven’t thought about how it absorbs the tablet if our bodies can’t. I’m guessing bc it’s a concentrated amount that is far more than in the food we eat. I asked about the injection thinking it would boost my levels faster but dr said I need the 5000 dose everyday for now. Maybe the shot later. What symptoms are you experiencing with this? Any similar to mine?

LACGlos profile image
LACGlos in reply to dingusgirl

Yes. Normally I can walk 10 miles no problem, but when my levels are low I can barely make it up a flight of stairs without feeling breathless. I have palpitations, pins & needles in my hands and feet, forgetfulness, digestive problems, dizziness and sometimes I just have to lay on my bed as I can't move or I fall asleep during the day when I've had a good amount of sleep. I didn't know you could get tablets for the tongue, perhaps it's a different kind of absorption. There's so much info out there, you don't know what to trust. Really scary to think you might not be able to trust your doctor too 😲

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