Gransnet forums


B12 deficiency

(25 Posts)
Elliebeth Mon 09-May-22 12:55:41

Hi everyone. I was diagnosed with B12 deficiency last week. I have copd and was getting more breathless and tired but thought it was my inhaler maybe needed changing. Blood tests show it’s the b12 and unfortunately they will not do the loading dose (6 appointments) until June as there are no appointments till then. I tried getting in earlier this morning but they are adamant there are no appointments. I feel very tired, off balance and have pins and needles in hand and feet, all common symptoms but am looking at another month now. Has anyone ever had these injections done privately. My oh says we should be able to get it done privately, I have seen it for a single jab but not for a loading dose which is one every other day. Any help would be appreciated

MerylStreep Mon 09-May-22 13:04:03

I have pernicious anemia. Yes you can get the loading does done privately. One word of advice: if you don’t feel the 3 monthly jab is working, push for a bi monthly.
My nurse takes B12 vitamins on top of her jabs.
We are all different with this condition.

Antonia Sun 15-May-22 14:24:46

You could try making chicken liver pâté. I have it on toast from time to time, it's full of vitamin B12.

sandelf Sun 15-May-22 14:36:22

Bearing in mind I am not a medic... Nor do I have vit B12 problem... Friends who have use, a methylcobalamin supplement and make sure to have a good quantity of either meat, poultry, fish or cheese, every day.

Shill29 Sun 15-May-22 14:48:51

Why not ring a private hospital and ask them if they offer that treatment? They should give a price too.
It sounds as if your needs are greater than you can get from food but may be worth a try too?

MerylStreep Sun 15-May-22 14:59:02

All the food and supplements in the world wouldn’t be enough for me. That’s why my injections are bi-monthly.

HousePlantQueen Sun 15-May-22 15:28:43

A B12 deficiency after a certain age cannot just be cured by diet alone, injections on a regular basis are needed; I used to know when my late DM's top up was due as she lost her appetite, got tired easily etc. A diet rich in B12 will help, but only after the initial deficiency has been dealt with. As this is such a common problem, I would think that it is possible to have it done privately ( although you shouldn't have to), at least initially and then ensure that you book regular top up appointments with the NHS. Good luck!

rite Sun 15-May-22 16:02:04

When I was diagnosed as B12 deficient earlier this year I was also told the surgery no longer recommended injections!?!
I was told to take a supplement. I bought Vitamin B12 Powder from Higher Nature (online I do buy other supplements from them). It is a raspberry flavoured powder you put under your tongue once daily. I used it for a month had another blood test and it was fine. I now take it when I think about it and have been fine ever since. I have regular blood tests as I am often anaemic and for my thyroid
function. It might be worth trying whilst waiting for the injections. Good luck and hope you feel better soon.

Elliebeth Thu 19-May-22 09:08:16

Thank you everyone for your replies and my apologies for not replying sooner. I rand the surgery again on the tuesday (10th) to ask about going private and it was then agreed they would give a single injection on Saturday. I had it done and by Tuesday felt a lot better. The dizziness has gone, still low on energy and headachy but much better than last week. Still not having the loading dose till June so will have to see how long it lasts. I take lansoprazole for reflux and have done for some years and this seems to be the problem. It stops the b12 being absorbed even though I have a varied diet so it doesn’t really help. I have seen some b12 patches advertised and will ask about them after I have finished the injections. Thanks again for taking the trouble to reply.

Doodledog Thu 19-May-22 10:04:12

I get injections every three months, and can tell when they are due. I 'lose' words, my memory weakens, I am tired and (oddly) my lips crack and swell.

During Covid all B12 injections were stopped, and we were told to take oral supplements. This made no sense, as the injections are given because PA sufferers are unable to absorb B12 from food. Now that the injections have been reintroduced the reminder letters have gone back to pointing out how important they are for overall health.

paddyann54 Thu 19-May-22 10:15:50

try pre and pro biotics for your reflux instead of the lansoprazole .My OH has been taking them for 3 months now and not a single episode of reflux ,its worth a try if its causing other issues

growstuff Thu 19-May-22 16:07:27

Diabetics who take Metformin can also have problems with absorbing Vitamin B12.

Drina01 Mon 30-May-22 07:38:35

Sorry late to this conversation. I too have experienced this and had loading doses from my GP. I had pins and needles almost throughout my body. GP however said as the loading doses brought the numbers up to only take OTC supplements. These didn’t help with me so bought my own injections privately. Certainly made a difference.

Elrel Mon 06-Jun-22 21:07:57

Just stumbled upon this thread while looking for other advice. I Had no idea my need for B12 could be responsible for so much of the general unwellness I experience. I’ve been mostly vegetarian for a few years. I think i had better be more flexible! My GP has put me on daily B12 and iron. I guess jabs may be in the future.

growstuff Mon 06-Jun-22 23:57:59

If your deficiency is diet-related, which as a vegetarian it could be, supplements should do the trick. The problem is when the B12 in your blood can't be absorbed, as happens with a number of medications.

Hetty58 Tue 07-Jun-22 00:34:53

NotTooOld, sometimes, the problem is with digestion, so, whatever the intake, not enough B12 is methylated and absorbed. My daughter needed injections following surgery for a burst appendix. There's a berry flavoured mouth spray that's organic and vegan for topping up. She had severe fatigue and brain fog when deficient.

Nannee49 Tue 07-Jun-22 06:01:46

Elliebeth searching online (as it's something I would be interested in) it seems Superdrug have a health clinics service which offers weekly injections at a cost of £29 per injection. (Apologies as I can't do links from my phone).

FarNorth Tue 07-Jun-22 08:05:45

Elrel have you tried Engevita - you can get it with additional B12.

Elliebeth Fri 10-Jun-22 18:22:01

Hello again. Well have had three of the b12 injections this week and to be honest not seeing much improvement yet. Felt very good yesterday morning but then by lunchtime very tired again. Had one this morning and very sleepy this afternoon. Three more to have next week so hoping things are better after that. My level was 123 which is low and don’t yet know what happens after the loading dose is complete. Could you give me more details of that mouth spray please Hetty. Thank you

Doodledog Fri 10-Jun-22 19:48:05

If you are having a loading dose of injections and will move onto a maintenance dose when your levels have risen I wouldn't mess about with sprays or oral supplements. That will falsify the results when your levels are measured.

I have had quarterly injections for years now. I can tell when they are due, as I get very tired, I forget words more than usual, and other symptoms kick in, After the injection, I don't immediately feel full of beans. The drug must take effect slowly, so it's not a case of feeling great after the injection, but of feeling low when it wears off.

tiffaney Wed 22-Jun-22 10:28:17

Please consider joining the Pernicious Anaemia B12 Deficiency group run by Pat Kornic. Its a free group. I have PA and l've learned more from this group in 3 years than in my 20 years since diagnosis, including what co-factors to take, folate is essential and how to purchase my own B12 and self inject. 3 monthly and 2 monthly injections are totally inadequate treatments. Most GPs aren't interested as its just a vitamin and theres no monetary incentive to prescribe it. Pm me if you need more help x

Elliebeth Wed 14-Sep-22 10:33:10

Good morning ladies. I have just had my three monthly b12 injection and don’t seem to be picking up much. The two weeks prior to the injection I could feel myself going down so told the nurse who suggested I speak to the gp about having them at a shorter interval. He basically doesn’t want to know, says it can’t be the b12 but didn’t suggest a further blood test or other investigation. I have spoken to the nurse practioner who was more helpful and we are going to wait until just before the next one which is December to see how a feel then. As I said I don’t feel great at the moment so will be taking some of the advise you ladies kindly suggested before. I have also looked into having a blood test done privately to see what the level is now and am taking b12 tablets. Just wanted to have a moan really so thanks for reading

tiffaney Sun 09-Oct-22 16:47:57

Hi Elliebeth, sorry l'm a bit late to this but l feel your pain! There is so much more to B12 deficiency and Pernicious Anaemia than people realise. For example, if you have PA you need B12 injections for life. Your stomach is unable to absorb it so no amount of b12 tablets will do any good. If you have B12d you still need injections. The treatment of one 5ml dose every 3 months is totally inadequate but trying to get them any more often than that with gps is like trying to get blood out of a stone. They never tell you either that your folate level needs to be in the upper 3/4 of the recommended level to absorb the B12 and make the injections work properly. Once you are on injections its not recommended to have further blood tests as they will not be accurate. Please consider joining the Facebook Support group 'Pernicious Anaemia & B12 deficiency Support. This is a free group and the help and advice on there is invaluable.
I managed to persuade my gp to let me have my B12 jab every 8 weeks but its still not enough for me. I have learned from the support group how to self treat with injections which l now do weekly. Its not illegal to do this. I have felt so much better by keeping my levels topped up.
The fight goes on between PA sufferers and the medical profession to get proper treatment.

MerylStreep Sun 09-Oct-22 16:59:01

I had a fight when I had to change Drs. The cheek of it was, it was the nurse who objected ? I got it every 8 weeks though.
And now joy of joys I have a nurse who doesn’t hurt me.
Those injections are a bugger.

Norah Sun 09-Oct-22 17:27:44

We're vegan, when our children don't come round at meals. We take B12 daily, eat copious amounts of foods high in folates (dark greens, fruits).

Fortunately no jabs needed, yet.