Is it too soon to add sublingual - Pernicious Anaemi...

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Is it too soon to add sublingual

Auntyp62 profile image
7 Replies

I had loading injections before Xmas and felt amazing after the first week. Now 5 weeks on I am back to feeling exhausted and numb in my face. I did tell my doctor that I wanted to try sublinguals after loading dose as I would prefer a continual even dose and not wait for 3 months between injections but is 5 weeks too soon

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Auntyp62 profile image
Auntyp62
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Gambit62 profile image
Gambit62Administrator

Q - did you have neurological symptoms - tingling etc- in which case maintenance shots should really be every 2 months per guidelines in UK.

People vary a lot in how long they retain B12, as well as how they respond, so not really possible to say how long B12 will last for you.

One one level it might be worth trying to get B12 levels done before you start supplementing but this would only be significant if the levels are low - so proof you don't retain hydroxo very long and hence need more frequent injections. However, its a lot more complex than just the measurement of levels - unlikely your GP is aware of that - so could backfire into GP telling you the way you feel has nothing to do with B12 if levels come back in normal range.

You can't overdose on B12 and if you have noticed the effect from loading doses dropping off then, aside from ruling out possibility of confirming you need more B12 because you don't retain it so long, it isn't going to do any harm to start supplementing ... though it is possible that sublinguals may not work for you - they don't for some people - but you can only really find out what works for you is to try.

Auntyp62 profile image
Auntyp62 in reply toGambit62

Tingling very occasionally, mostly tinnitus and nerve pain in my face which completely went a week after 6 loading injections but is beginning to come back along with fatigue. Armed with info that I am unlikely to overdose I will try sublinguals

Gambit62 profile image
Gambit62Administrator in reply toAuntyp62

Hope they work

The treatment is slightly different if you have neurological symptoms and should have been loading shots every 3x week until symptoms stopped improving followed by maintenance shots every 2 months/8weeks - doesn't help with the 3 months shortfall but if you could at least get your GP to treat you in line with the current standards it might cut down on the amount of supplementation you need to pay for yourself

cks.nice.org.uk/anaemia-b12...

bcshguidelines.com/document...

refer to p8

Auntyp62 profile image
Auntyp62

Thank you, I will speak to GP and hope he is willing

Singoutloud profile image
Singoutloud

Like you I finished loading injections a couple of day before Xmas. I started supplementing sublingual B12 within a couple of days. Taking 2 x 5000mcg solgar methylcobalamin bought from Amazon. Without them I wouldn't get through the day. Normally pop one under my tongue on the drive to work.

I will be having injection two monthly instead of three because of neuro and thyroid problems. The bcsh guidelines helped me when talking to my gp

Softpaws profile image
Softpaws

Hi. Are you likely to get any follow up blood tests? If so, I'd recommend you wait until then - unless its going to be at the 3 month stage! I had a blood test 1 month after my last injection and then I went for skin patches, sublingual liquid and a B complex multivitamin as I was feeling so bad. I started to improve after a 2-3 weeks and after a while cut back on everything except the skin patches, which I take 3 times a week.

In my opinion, theres no chance of overdosing and we all need a life, so whatever works to keep you in the land of the living - go for it!

Also, remember, you also need folate, magnesium and something else (oops sorry) and it would be a good idea to try a different type of B12 (I'm assuming the injections were hydroxocobalamin?) just to balance it out (I found methylcobalamin helped me tremendously, but everyone is different).

Good luck!

Softpaws profile image
Softpaws in reply toSoftpaws

Also, sorry forgot to mention, although you cant overdose on B12, be careful not to take too much folate, as you can have too much of that. The "other" thing is Potassium.

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