Gezabelle: Does everyone feel the... - Pernicious Anaemi...

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Gezabelle

Gezabelle profile image
9 Replies

Does everyone feel the benefit of B12 injections. I never feel any benefit at all. I’m still always soooooo tired and my serum levels are high. Doctor won’t drop under 3 mts. Between injections. They ALL do what they’re told. Don’t listen to patients! They go by the book. My daughter gets hers every 8 weeks she’s 55 yrs. I am 78yrs I get mine every 12 weeks both have high serum levels, how does that work!!!

Gezabelle

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Gezabelle
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Gambit62 profile image
Gambit62Administrator

The first time I noticed was after a maintenance dose and realising that at 1600 I wasn't falling asleep and totally exhausted.A friend commented once, after giving me a lift to the surgery, that I'd come out of the surgery after my shot with a spring in my step.

The effect would only last a couple of days though.

Serum B12 is at best a difficult test to interpret after you have had a loading shot as the conditions of the normal range are totally changed by the fact that the first injection raises your serum B12 levels off the scale and then they gradually reduce at rates that can vary significantly. I don't think anyone has done a study of how variations in time taken to remove B12 (which can be years) relate to symptoms returning. Its easier to follow the quantitative measures than it is to look at quantitative measures like how a person feels.

Sleepybunny profile image
Sleepybunny

Hi,

I'm wondering if you are getting enough B12.

I need far more B12 than NHS is willing to give me so I had to resort to treating myself.

"Doctor won’t drop under 3 mts"

Have you asked GP why they won't give injections more frequently?

Knowing why they are reluctant can help you argue effectively to get them more often.

If you have a PA diagnosis or suspect you have PA then worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Have you considered writing a short, polite letter to GP asking for injections more often and backed up with some evidence supporting your request?

See letter writing link below.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

If you have neuro symptoms, my understanding of BNF (British National Formulary) guidance is that you should be on injections every 2 months.

See section for those with "neurological involvement" in link below.

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

GP can find this information in their BNF book Chapter 9 Section 1.2

If you find out why the GP is reluctant to give you injections more often, come back to the forum and I'm sure people will be able to pass on other useful information to you.

Gezabelle profile image
Gezabelle in reply to Sleepybunny

Rule is every 3mts my levels are good. End of. They know nothing about B12. So frustrating. I’m trying to get B12 privately.

Gen89 profile image
Gen89

Is it possible that your tiredness is being caused by something other than your b12 deficiency? Have you had a full blood count, liver and kidney function tests, diabetes test, thyroid test and iron levels checked? Has your heart function been checked out?

Gezabelle profile image
Gezabelle in reply to Gen89

Yes all bloods are fine. Doctors do not put a lot of emphasis on B12. That’s what I don’t get, it’s so important. They think if your blood count is between 200 and 900 your absolutely fine. Completely wrong. But no investigation is needed!!!!!!!!!

B12life profile image
B12life

Was your vit d, folate, iron all normal?What was your b12 level before any injections?

Gezabelle profile image
Gezabelle in reply to B12life

B12 levels 1100 All else good

B12life profile image
B12life in reply to Gezabelle

That was before your first injection?

Gezabelle profile image
Gezabelle

Yes. I think intrinsic factor is low.

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