Too soon!: I need my injection B1... - Pernicious Anaemi...

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Too soon!

tiredjan profile image
14 Replies

I need my injection B12 every 3 weeks, anyone else need theirs that often? I am made to wait 4 weeks, but all I do is sleep for that week!

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tiredjan profile image
tiredjan
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14 Replies
wedgewood profile image
wedgewood

I need an injection every week but my doctor will only allow every 3 months . So I’m forced to self-inject .

ojshua profile image
ojshua

I am in the same boat as you. I needed more frequent injections, but my doctor is holding me to 4 weeks. I am seeking alternate options now. I can't live like this anymore!

ACritical profile image
ACritical in reply to ojshua

Lucky you, my neurologist put me on monthly injections for life but my new GP overruled him and put me on once in three months. I manage my B12 deficiency myself now, sick and tired of trying to ask for something I so obviously need and not get. I self medicate when I need an injection.

Bobonuts profile image
Bobonuts in reply to ACritical

What do you use in " self medicate, is it self injections? I'v seen so many on here gone down the self inject as it's their only way and worries are some are doing it very frequently , much more than once a month. I'm on 3 monthly jabs and take sublingual supplements and a large battery on vitamin pills with Folic acid etc mainly a month before my next jab . If I didn't I feel so ill with mixed symptoms. BTW Gp told me today that evidence has emerged that Oral regula B12 ,even in malabsorption cases is effective and the NHS UK is scientifically moving away from B12 injections all together.

ACritical profile image
ACritical in reply to Bobonuts

I self inject , subcutaneously. About once a month. I can not take supplements, they trigger a migraine as many of them contain absorbic/ citric acid added as a preservative. If you read the advise given on this and on the P.A.S site, it tells you that you cannot really overdose on B12. However I suggest not to use more then your body really needs, you learn by experience. It's not a miracle cure that will solve all of your ills but it does help a lot!

clivealive profile image
clivealiveForum Support

Hi tiredjan you are certainly not alone in this respect.

Have you had your Folate level tested recently?

It is important that your Folate level is monitored as this is essential to process the B12 you are having injected.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps your iron function properly in the body

Baggy8 profile image
Baggy8

I got my GP down to 8 weeks, but no amount of evidence was going to move him from that, so I SI every 2 weeks. He knows but is essentially washing his hands of me. Just having a few months breather before again trying for a GP who might actually care 😏. Take care

Softpaws profile image
Softpaws

I eventually got my gp to agree to monthly injections. After a few months all was going well then I gradually worsened again. Self investigation bymy husband showed that gluten intolerance's very similar to b12 symptoms (I'm already dairy and soy free). Three months on I feel better and considering lengthening my b12 injections. This may not be the reason for your issues, but its all too easy to focus on just the b12.

CCSP-27 profile image
CCSP-27

Yes, it is all too easy to focus on B12 ! I'm exhausted researching but it's worth it as I've discovered so much.

Pernicious Anaemia dx and high level of antibodies discovered (I insisted on those tests btw) In addition, I've got the HPylori bug and I'm a little concerned about future dodgy gut cells but that's a 'sequel' - I'll keep you all posted - GP says endoscope not needed but it's protocol for yearly checks in Europe, USA and Australia so ......??????

GP did usual loading dose - every other day for a month and then wanted to reduce to every 3 months. I firmly said NO I wasn't prepared to live in this reduced state and needed every two weeks at least. The truth is I get about 10 good days and then everything changes and life deteriorates ........no surprise there.

If he revokes this at my next appointment I'll have to condsider self injecting I know he'll try to blame my many other health problems for my symptoms- there's quite a few so it's a bit like 'take your pick' ! When I insist I know the difference and this is not just tiredness but in fact disfunction I KNOW he doesn't believe me or value the differences. He likes to blame my (as yet undiagnosed) brain condition ......that of course is easy because he can just defer to my Neuro team. Then there's the Hashimotos.....no understanding there either!

I think we're all frustrated at the lack of training for GP's (and incredibly, even Consultants) in these autoimmune diseases that reduce our lives so badly ! I feel I've been running on half power for about 40 years yet I am a high functioning, high achiever who 'looks well' , or so I'm repeatedly told by every medical Pro I meet ............might be the hair and make up😂

JanD236 profile image
JanD236

I si weekly to every 10 days depending on my activity levels. (I cycle a lot and in the summer might do a couple of hundred miles a week and definitely need weekly then). As we’re going into winter and I won’t be doing as much I’ll see if I’m ok cutting down the frequency a bit.

My GP has prescribed monthly incidentally.

jillc39 profile image
jillc39

I have just been able to move from three weekly to two weekly - and I know what you mean. I was ok for two weeks and slept away the third week waiting for my b12. but my goodness me it has been a fight.

olivia07 profile image
olivia07

I self inject every 3 weeks. My GP thinks it's every month and, so far, hasn't commented. I stock up every year when I go to Spain, which she knows about, where you can buy Hydroxycobalamin over the counter in reputable pharmacies for 2.80Euros for 5 vials, so I'm saving the NHS money!! I'm having terrible problems focusing my eyes, which can be somewhat problematic when driving, but am worried about having this investigated in case it turns out to be REALLY serious. An eye test showed 20-20 vision and no problem with the eyes. Could this be connected to my P.A.? Has anyone else experienced this?

Bobonuts profile image
Bobonuts in reply to olivia07

Hi Olivia07, Good to know it's easy to get in pharmacies in Spain. I'll keep that in mind. Sorry to hear about your eyes you must get it sorted out. Good luck.

Ryaan profile image
Ryaan

Yes, I SI every 2 wks. I start getting symptoms in the 3rd week.

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