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b12 injections intervals question and symptoms

7 replies

MG2020 · 01/11/2020 13:26

Hi
I was diagnosed about 21 years ago with malabsorbution and my b12 reading was about 30 and my teeth had become loose, tongue was off, I was forgetful and the numbness that I first noted in my left toe only had spread to my hands/fingers, toes, feet and legs and could hardly wlak. Months before I'd been feeling unwell as well as feeling sick and gp though it was my old iron problem but it was not. I used to get massive back pain in the middle of the lower back for months where I'd wake up in agony.

so malabsorbtion was diagnosed - b12 injection led to 3 monthly and then monthly then weekly again then monelt and for 20 odd years once every 3 months or 12 weeks. Las year od so start getting pins and needles about 8 weeks into the injection and gp refused once every 8 weeks.

My blood tests a few months ago showed b12 at 650 but I do start feeling like this around 8 weeks and this time its worse in right toe and middle of right hand. I'm aware gp says it happens to both sides togetehr but it never was the case initially.

I've looked up a chemist costing 30 quid a lot of money for me but even they have to contact gp.

I will try to get an appt Monday and lie a bit but not really a lie as more noticeable right foot and hand. I thought it was through jogging on a jogger as I was feeling my big toe hurting about a week ago on it but not now jogging.

I take vit D and folic acid I'm 62

OP posts:
Didntgetmydiamondring · 01/11/2020 14:31

There are lots of people in the U.K. struggling on 12 weekly injections I did read on a forum about people ordering the ampoules from Germany with no prescription. Awful that people have to consider it though. Mine won’t consider earlier injections so I am contemplating buying some, I hope you get somewhere with your Dr.

healthunlocked.com/pasoc/posts/137635730/where-can-i-buy-vitamin-b12-injections-from

www.mumsnet.com/Talk/_chat/3992683-Self-Injecting-B12?msgid=99084933

www.dailymail.co.uk/health/article-2191161/The-60p-injection-boost-flagging-energy.html

www.b12deficiency.info/blog/2017/03/10/a-b12-serum-level-cant-tell-you-how-a-patient-is-feeling-only-the-patient-can-but-why-is-no-one-listening/

MG2020 · 01/11/2020 17:12

Hi
Thanks. Any more experiences, pleas.

OP posts:
MG2020 · 02/11/2020 18:08

Update. Doc reluctantly agreed to give me a jab on Wed when I mentioned updated at NICE re jabs at 8 weeks, but a one off and a blood test.

OP posts:
dontdisturbmenow · 03/11/2020 08:11

Testing is a complete waste of time and your to should know that.

The test will only show how much but b12 is in your blood but you've already been confirmed that you are not absorbing it, so a higher level means nothing.

You can do an active test which will give a better indication but it still won't say exactly how it is affecting you. Your GP should go by your symptoms which after all this time, you'll know very well when you need another dose.

I know exactly when I need one, I start getting out of breath and heart rate getting high just walking. It's my first symptom and the trigger for another injection.

I do it myself, ordering from Germany.

MG2020 · 03/11/2020 10:27

Thank you but your assumption that "testing is a waster of time...should know that" is a false assumption.

I am not a doctor, consultant, nurse etc and most of the time accept or good as forced to accept a docs plan of action. The other day I did argue my case more strongly as I am not well and planed ahead.
Thank you

OP posts:
Runningoutofnamestochange · 08/11/2020 21:39

You need the blood test before the injection otherwise it will just show the increased level due to having your injection.

loveyouradvice · 09/11/2020 13:36

I inject myself. It's not difficult. Although I do get bruising around the tummy site sometimes... that said, I do it fast and in a rather cavalier way!

At one stage I did it weekly and symptoms flared up if I missed it.

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