Where do I order b12 injectable from ... - Pernicious Anaemi...

Pernicious Anaemia Society

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Where do I order b12 injectable from please I'm in UK!!

Louloulou72
Louloulou72

Hi I'm Laura in UK, I've been left to suffer with the b12 deficiency for a few years now, I had to fight for a few years to get blood tests!! And I've been left with depression, balance problems, eyesight problems, extreme constant fatigue, ulcers, pins and needles and numbness, confusion, hair loss, etc etc. I've always been anaemic and suffer badly with bit d deficiency too. I believe it's all from a gastric band which wasn't done right, and after years of agony it was removed and it was found that the band had been cutting off the blood supply to part of my stomach!!

My GP has given me my course of 6 initial b12 injections but has not intention of keeping them up and gave me tabs instead which we all know only a tiny % is absorbed. I feel cheated as I knew something was wrong for years, now it's been proved and they don't care!!

I've seen posts on here you can order the b12 injectable from Germany, could someone tell me exactly what it's called and the dose etc please, and where I can buy the syringes from please, I'm desperate not to go downhill even further xx

24 Replies
oldestnewest

Hi Laura,

I’m sorry to hear your story. You are not alone in feeling robbed or cheated. I’m new on here and one of the extremely knowledgeable people will no doubt help you with that xxx

Thankyou my love xx 😘❤️

The 6 injections are called loading doses and it is possible that after the loading doses tablets will be sufficient to maintain your b12 level.i have PA and hashimoto's and have injections every 8 weeks.there is also a sublingual spray you can use.x

Pleasure ❤️

What you are describing are neurological symptoms and as such your GP should be giving you injections every other day until there is no further improvement. B12 injections are very cheap and I have never understood why GPs are so hung up on injection regimes that dont work for people. It would be worth showing them the guide lines.....

You can buy the vials, needles and syringes. Many people self inject. I cant remember where you get them from but do search through the posts as the sources will be listed. I used to buy mine but finally got what I needed on the NHS.

Sorry Im not of more help. But please take heart you can sort this.

Am sure someone will come along and advise you of the sources if you cant find them in other posts.

fbirder
fbirder in reply to waveylines

I’m in the process of trying to write a comprehensive guide as to how I get my stuff for self injection.

That would hugely welcome and very much appreciated

I’ve been guided by your knowledge for a number of years and doing well as a result !

Do you think our departure from the EU will affect our ability to order ?

Hidden
Hidden in reply to clairemallen123

I don't think it should, as one can buy from canada and the Philippines. I order a 100ml 3000mcg from the Philippines. It lasts over a year for me and my wife and daughter.

Hidden
Hidden in reply to clairemallen123

Oxford bioscience sells the powder and you just reconstitute with injectable saline. I order from there also

JanD236
JanD236 in reply to Hidden

SPIDERPATS this forum does not recommend the use of powder that needs to be reconstituted because of the possibility of contamination with bacteria and whatever else.

Single use vials only are recommended.

Hidden
Hidden in reply to JanD236

healthunlocked.com/pasoc/po...

fbirder
fbirder in reply to Hidden

That's dangerous. You cannot guarantee that you're not contaminating the solution with bacteria and fungal spores that can grow in there. Not the sort of stuff you want to be injecting.

Hidden
Hidden in reply to fbirder

Thank you for the replies whilst I appreciate that my be possible, we have been doing that for years. Maybe it helps because my wife is a nurse !?

fbirder
fbirder in reply to Hidden

Maybe it helps that you've been lucky.

So far.

It really is not advised. I'm surprised your wife is OK with it.

Still, it's your body.

Hidden
Hidden in reply to fbirder

healthunlocked.com/pasoc/po...

My wife is absolutley amazing, she not a regular nurse, actually quite high up & knows her field. Its only people that rely on doctors that are scared to look after their own health. Whilst I appreciatecyour concern its our health and we mind it VERY well. Kind regards.

Nackapan
Nackapan in reply to Hidden

Obviously its fine to do what you feel safe with.

Best not to recommend it to others though .

The single use ones made for safety. I'm very glad to have them.

Hidden
Hidden in reply to fbirder

healthunlocked.com/pasoc/po...

fbirder
fbirder in reply to Hidden

I notice many of the people on that thread are no longer active.

I hope they are all OK.

I've just bought another 100 ampoules to avoid any possible Brexit chaos. I described the process and I've just posted that description.

There will be problems from Jan 1st for several months. Our idiot government just haven't got the procedures in place for a no-deal Brexit. I doubt they have procedures in place for any deal they may be able to cobble together.

I have enough B12 (including my NHS stuff) to last me until August 2021. And I would hope that the worst will be over by then. But I wasn't going to take any chances so I'm now OK until the end of 2022.

I really would recommend others that rely on self injecting to panic buy now and get enough to last a year.

Louloulou72
Louloulou72 in reply to fbirder

That would be so so helpful xx

fbirder
fbirder in reply to fbirder

healthunlocked.com/pasoc/po....

Hi,

May be worth having one more go to get treatment from GP.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about writing to GP if under treated for B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs and devolved representatives may be worth talking to if struggling to get recommended levels of treatment.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

Useful B12 book

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date , see BNF link above.

If PA has been diagnosed or is suspected, have you considered joining PAS. They can offer support and useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Support and info also on websites below.

B12 Deficiency Info website

b12deficiency.info/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, more B12 books, B12 websites, B12 articles/documents etc.

healthunlocked.com/pasoc/po...

UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

Look through wedgwood posts and fbirder . They have posted the information you need.

Use the magnifying glass at the tip to search.

I buy rotexmedical depot 1mg/ml from versanapo . Needles from medisave. I got help here.

Use the same sort of b12 youve had from the doctors.

Push to get your treatment .

Write in . I bought some as worried about what my surgery would do .

I pushed ti get treatment on the NHS and do get it. Its then on your medical notes.

Alot of us do both.

Some hitting a brick wall opted out and taken control by self medicating.

I tried my best to help x

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