Self Injecting?: (If anyone hasn't seen... - Pernicious Anaemi...

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Self Injecting?

KCxo profile image
KCxo
13 Replies

(If anyone hasn't seen my previous posts, basically, I was on cyano pills and folic acid for a year and they didn't help at all. I had a blood test Nov '15 and my levels were around 100, so my GP sent me for a loading dose of B12 injections. My bloods were re-done a month later and my levels had fallen to 93 so I then had another loading dose, plus four weekly injections and when my bloods were tested again, the new GP said I was now "fine" and didn't need to continue with any treatment.)

It's been 6 weeks since my last injection and I feel my energy levels dropping quite rapidly. I'm sleeping anywhere between 11-13 hours a night, waking up and being tired again 4 hours later. I'm struggling to walk my dog without feeling lightheaded. I can't concentrate on anything and I'm getting pins and needles in my scalp/back again.

I tried to make an appointment to go and see my 2nd GP (original one left) and she's still on her annual leave and won't be back until the end of May, and, the only GP left in the surgery right now is the one who blamed my condition on "crappy diet" and said I didn't need any more help.

To tide me over until I can see my nicer GP, I was considering self injecting. I have some vials of the cyano left over and was wondering if anyone had any advice on how to do this, where to buy the needles (that ship to UK) or any alternative solutions?

Thanks in advance.

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KCxo profile image
KCxo
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13 Replies
engels profile image
engels

It's easy to get needles and syringes in the UK. I buy mine from Medisave:

medisave.co.uk/consumables-...

Lisahelen profile image
Lisahelen

Via amazon a company called proximity for 100 syringes 2 sizes of needles mediswabs and sharps boxes £23 free delivery. Got mine in a matter of days.

pvanderaa profile image
pvanderaa

YouTube videos how and where to inject was how I started.

KCxo profile image
KCxo in reply to pvanderaa

Didn't even think of that! I'll definitely go and have a look on there. Thank you!

Sleepybunny profile image
Sleepybunny

"my levels had fallen to 93 so I then had another loading dose, plus four weekly injections and when my bloods were tested again, the new GP said I was now "fine" "

Hi,

Just curious to know what your levels were at the point the GP said you were "fine". Was it just B12 that was taken at this point? Did they do ferritin , folate and  a full blood count as well?

clivealive profile image
clivealiveForum Support

Hi KCxo  

What made your doctor think you were on a "crappy diet"? Do you have any idea why you are B12 deficient?

You've said previously that you're not vegan or vegetarian, you eat a little meat mainly chicken, but no fish, you've not had stomach surgery etc etc.

How about, as Sleepybunny  asks, Folates (B9) which are found in leafy green vegetables and works "hand in hand" with b12 and is an essential part of your diet?

KCxo profile image
KCxo in reply to clivealive

I don't have any idea why I'm B12 deficient. One GP said it could be intrinsic factor but another looked at my blood tests and said it wasn't - keeping in mind, this was the same GP that thought 120-200 was a "high" level of B12.

I think my previous GP wanted a quick answer and decided to blame it on my diet.

I do eat some leafy greens, but I prefer lentils/kidney beans and cereals that have folic acid in them. Either way, it is in my diet. I was on folic acid tablets as well, but have now been told, by my current GP, that I don't need them.

It's so confusing.

clivealive profile image
clivealiveForum Support in reply to KCxo

I'm so sorry you don't seem to be getting anywhere KCxo   and hope things start to get better for you soon.

Gb57 profile image
Gb57

I got my needles and syringes from Amazon. Read up on needle size, you will get lots of info on this site. Good luck

Laura5 profile image
Laura5

Have you been in touch with the Pernicious Anaemia Society?

LtAngua52 profile image
LtAngua52 in reply to Laura5

I've spoken to Martyn Hooper twice, he was unhelpful, rude and dismissive. Am I missing something? Sorry, but that was my experience. Told me to look at the information on the site which I'd already done. Said I should buy his book! Kerching! Then told me to contact the b12d charity, again already done. As I said, not helpful to me and he was brusque, cut me off mid explanation and dismissive. He may have helped other people but not me. :(

Laura5 profile image
Laura5 in reply to LtAngua52

That's a shame. I haven't spoken to Martin so I can't comment from experience but this was really a question to KCxo because Martin has recently written a blog post about GPs withdrawing treatment so I assume he would be interested to hear about KCxo's experience even though they haven't had a diagnosis of PA.

martynhooper.com/2016/04/24...

LtAngua52 profile image
LtAngua52 in reply to Laura5

Yes, he needs to know the problems people are having getting continuous injections. I'm sure it will be in his next book.

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