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B12 deficiency.

(37 Posts)
tiffaney Thu 14-Jun-18 15:54:02

Does anyone suffer from b12d/Pernicious Anaemia and self medicate with injections as they feel the 12 weekly 'one size fits all' maintenance dose is not enough?

tiffaney Sat 08-Dec-18 17:41:28

Farview how often do you get your injections? I was getting mine every 8 weeks and it still wasnt enough. Are you a member of the Pa/b12d support group? This is not the PA only group but a very supportive group run by a lady called Pat Kornic and l can recommend it for advice. I've been self injecting once a week now since l started this post in June and it really makes a difference. I do it subcutaneously (in the stomach) with a shorter needle than the intra muscular one. You cant overdose on B12 so its perfectly safe.

allsortsofbags Sun 09-Dec-18 13:55:21

I've have PA and was diagnosed nearly 30 years ago and 12 week injections just aren't enough any more.

I now SI using the sub cut method but have used sublingual tablets and liquid as well as patches in the past.

Both sublingual and patches have helped but it is only since I started self injecting that I started to feel more like my old self.

Since starting to SI I have noticed a reduction/reversal of some of the damage I'd been carrying.

For instance my eyesight. Even the optician commented on the improvement, not just on the eye test it's self but she showed me those photo's they take and the notes made by the last optician and said she could see some real improvement that she wouldn't expect given my age.

My balance before SI was really bad but that has improved so much too so if you have everything give it a go.

I am a member of a couple of online PA groups and have found the information and support really helpful, lots more information there too.

Good Luck

ninathenana Sun 09-Dec-18 18:06:18

DH has been having B12 12 weekly injections at the GP's for about 2 yrs.
When he is due he suffers sleep disturbance and is consequently grumpy. We didn't realize this was a side effect of being deficient until DD read it on line. He is T2 diabetic as am I but I am insulin dependant. I'd happily inject him. I didn't know that was possible.
I don't know what his levels are.

farview Mon 10-Dec-18 11:55:03

Hi tiffaney well I haven't got PA according to doctor...but in May 2017 after feeling really poorly for ages,a new doctor found my b12 to be really low and had 5injections in a week..but then told to take oral b12...felt Brilliant for a few months..fast forward to September,had my flu jab,nurse asked how I was and I told her I felt poorly just as I did before the b12 injections..she got my notes up a d my level had dropped by 530 so was referred to doctor, who said it was just within normal range..my argument was that it shouldn't have dropped as I take a supplement.. reluctantly she gave me 4ampoules to be injected every 12wks..next one due Dec 27th but feel terrible,tired,not sleeping,pins& needles in hands&feet, really down....so today the 10th am definitely going to let my daughter in law inject me, I asked for my intrinsic factor to be tested again but told wasn't necessary..am vegetarian..

newnanny Mon 10-Dec-18 12:05:20

After a blood test came back showing i had this deficiency I started buying high dose of VitB12 from Holland & Barratt. I feel less tired now.

tiffaney Tue 18-Dec-18 13:54:42

Hi everyone, sorry for delay in replying. To 'allsortsofbags', good for you for self injecting and it just goes to show its doing some good. Ninathenana, find out his levels and consider self injecting or doing it for him. Farview - you can still be b12 deficient without having PA.
I hope l've replied to everyone. I find it difficult on here when l go to reply that l've forgotten who said what, unlike Facebook where you can look back while responding. Anyway, it seems like a few Gransnetters are also finding the 8/12 week dose is insufficient so l would say for those who havent already, join the support group, consider self injecting, and dont believe drs when they say you can overdose on too much, its just not true. People with b12 deficiency for whatever reason need to be on optimum levels + folate in upper 3/4 of range to feel better. I know its benefited me

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Sealover Sun 17-Mar-19 17:26:11

I was diagnosed with B12 deficiency last year by a locum GP. He advised shots every 10 weeks following the loading dose supplemented by a daily tab of Methyfolate which aids the work of the B12. I get mine from Cytoplan who give a good discount following the first order.

Albert321 Sat 27-Jul-19 07:40:06

I am having b12 deficiency can you suggest some good ways to cure it. Right now I am taking MIC Shots do you have any other supplement. I ordered this from buymicb12.com

Joce345 Sun 28-Jul-19 16:19:26

I was diagnosed 25 years plus have had injections every 3 months. Yes I feel I need them more often very tied when it gets to about 2/3 weeks before but my GP flatly refuses to give me them any sooner .. 3monthes he says that should do