B12 deficiency light

[Beanydog]

Hi all. I have had pernicious anaemia for many years and like many people here, I have struggled with the frequency of injections. To begin with 12 weeks seemed OK, but over the years this was failing to last. My GP put it down to 10 weeks which helped but I was still struggling towards the end so I started paying privately for a 5 week one. During the covid pandemic I've been unable to work and couldn't afford my 5 week injection. I'm now with a new GP so I tried again. She refused to do them any more frequently as it breaches nhs guidelines. She did however recommend a b12 oral spray. This is absorbed through the cheek lining, thus bypassing the gut, so lack of intrinsic factor is no longer an issue. I'm now 3 months in, and I have to say, feeling fine. As a back up to my nhs injections, the oral spray seems to be working, and I can increase the dose if I feel the need. This stuff has been a game changer for me. Try it out.

[Nackapan]

I'm so glad that has worked for you between injections. Was it the 'better you spray? What dose of b12 is it? I think my mum and daughter could try it as on 10 weekly and 12 weekly injections

Ivr tried oral sprays before of b12

I've not found them effective .Also tried different doses of b12 orally throughout the day.

Disappointing as would be helpful between injections if worked for me.

It's strange doctors do not realise everyone is different and your doctor must understand this doesnt work for everyone.

I am trying a vit d one with vit k in as levels have dropped.

However the NHS guidelines do permit a higher frequency of b12 injections if in the 'best interest of their patient.'

Fot others reading.

I'm prescribed 2 weekly b12 injections .

I think it's hard to push beyond that as a maintenance.

[Tch77 in reply to Nackapan]

Hi , are you taking the vit d and k in tablet form or another form?

[Nackapan in reply to Tch77]

I've taken vit d for years in tablet form raising the leve from 21 mol/l (range 75+) I've only recently bought a spray. Blood tests will show what's needed.

I manage to keep my level hovering ' in rage' but its dropped again as winter. So thought I'd try the spray as combined.

[Gambit62 Administrator]

most of the spray is actually swallowed and absorbed in the gut outside of the normal mechanism that doesn't work in PA - this works for some people because the dosage is very high. Unfortunately it doesn't work for everyone and the only way at the moment of knowing who it is going to work for and who it isn't going to work for is by trying it.Really good that it works for you - we have other members of the forum who find it helps as well

[wedgewood]

I have tried that oral spray when I was desperate , and it was simply useless fir me . Only injections work for me . The trouble is than when doctors hear that thw spray works for some , they think that it will work for everyone , which it doesn’t . It is so cheap to self inject if you buy the ampoules from German online pharmacies - about £60.00 for 100 , Needles and syringes also very reasonable from UK medical suppliers .

[Parksy]

So pleased it helps you. In desperation I tried sublingual tablets, spray and patches but none of them touched me.

[Purple-y]

I am really glad to hear that the spray is working @Beanydog.

I was diagnosed with being deficient in B12 a couple of months ago even though I eat a very B12 rich diet, and was then prescribed a loading dose of 6 intra-muscular injections, but I still have neuropathy in my hands, feet, legs and tongue plus other symptoms.

My GP refused to continue with injections to relieve symptoms against guidelines and I saw spray as my only option.

I am trying out the Horbaach vegan methylcobalamin which is 2,500 mcg per serving and taking it every other day.

[Nackapan in reply to Purple-y]

Hope it works if not push for the treatment you need . I did Or buy your own.

[Purple-y in reply to Nackapan]

Thank you Nackapan I very much intend to.

With my continuing symptoms, I am getting angrier by the day with my GP's lack of knowledge around guidelines and nurses lack of empathy. - however one listened and did task the GP but to no avail and the last nurse was extremely rude and told me that she knew the symtoms would dissipate now - as I was standing there with burning feet, numb toe, painful thigh, pins and needles in my hands and tongue, knowing I would be breathless after only a short walk to the car.

Are they aware people self inject so not to be in pain and suffering to enable a plausible and comfortable life? This is craziness in the extreme.

At the moment the treatment plan every 3 months so I think it will be a case of waiting for a period of time, before making an appointment for further consultation with my GP.

I am finding this forum extremely helpful, and for instance I am making sure I am sustaining my potassium and vitamin D intake also after seeing increased B12 did push down potassium levels.

Take care

[Nackapan in reply to Purple-y]

Yrs all very frustrating. I didng dream I'd be buying it but do.

I did push and push as still not a symptom free day .

Hoping frequent injections will eventually pay off.

I only ever fot to 5 weeks waiting for for first 3 monthly. They should never have stopped

I went back on every other day for months at my doctors which got me back walking in a straight line and out of bed for a few hours.

[olicana1949]

Im only at 10 weeks after first GP dose of 6 B12 injections and now see the return of symptoms. I've yet to find out how far I can push the UK GP into more frequent injections but your positive approval of the nasal spray is very encouraging for a painless "top up".

[GraceDelaney]

Hi there,I also have been using a B12 sublingual spray now the last couple of years and it has been a game changer I never had to get any injections since I have been using it as my levels are now great. I just make sure I have 6 monthly blood tests to check my levels.