Pernicious Anaemia Society
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Low B12 questions, new to forum

I am 49 yrs old, living in the U.S. I started having symptoms several months ago. Daily "woozy" feeling, tinnitus and then developed neuropathy symptoms in arms and legs and random, painless muscle twitching. I was diagnosed with low B12 (although within "normal" range, 250 pg/ml). I am otherwise healthy.

Doctor started me on monthly B12 injections and daily 500 mcg sublingual. I have had 2 injections so far. The muscle twitching noticeably reduced and I was feeling some improvement with neuropathy. This last week I am noticing these symptoms increasing again and I am discouraged.

I am due for my 3rd injection in about 10 days. Is this symptom reoccurance normal? Also, I would appreciate thoughts on the oral supplement..should the dose be higher?

Thank you.

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Hi Rdr86

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

Reply

Thank you for your response. It is reassuring that I need to just continue be patient and give myself time to recover. I appreciate the analogy of the radio, makes sense!

I checked my blood count and it looks like my folate is within normal range (mine is >22.00 ng/ML). I am reading more about the folate connection and will keep my eye on that number.

Take care and thank you again for helping a newbie!

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500mcg a day does sound low for oral - usual recommendation is at least 2x that - 1000mcg.

Oral doesn't work for everyone but can be quite effective for some. B12 isn't toxic so using larger amounts isn't a problem if you are also on injections - if your symptoms went and are starting to come back i'd suggest trippling for a couple of days and see how that goes and then reducing it to double again after your next maintenance shot - this is because what you are trying to do with the oral is to keep levels topped up and high and replace the amounts of the excess levels that your kidneys are reducing but the amount you will actually absorb from the tablet is quite low - average would be 1% - so if you need to make up a deficit rather than just keep levels high then the amount you need is likely to be higher. After your maintenance shot though you will only be replacing (though the sums may not work out exactly as the rate at which you lose B12 is higher when the levels are higher).

All you can really do is experiment until you find out what works for you.

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Hi Gambit62

I appreciate you giving me some perspective on the B12 retention process. I am going to tweak my dosage and see if I get some improvement. Sounds like time will tell!

Thank you very much.

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