I joined this site today.

[tiredjan]

I am so discouraged by the fact that my GP will not give me my injection when I feel I need it, he makes me wait 6 weeks. I am really exhausted and fed up of feeling useless! I am considering self injecting, was hoping for some feed back?

[Gambit62 Administrator]

Sorry to hear that things are such a battle with the GP. I personally find that supplementing with nasal sprays works very well for me - though I do also self inject.

It is only injectable B12 that is controlled by prescription in the UK as it is caught up in the rule that says that all injectable substances must be prescription only.

France and Germany have no such restrictions so you can get it over the counter and a lot of people order theirs from Germany.

You can inject subQ or intra-muscular - if you go for intramuscular then you really need to get someone to show you how to ensure you are doing it safely - subQ less complicated, but studies show it is slightly less effective in terms of the amount that gets into the blood.

[tiredjan in reply to Gambit62]

Thank's for your response. Is there a video or something out there to demonstrate how to best self inject? I would go for intramuscular as that's the way the GP has always done it.

[Gambit62 Administrator in reply to tiredjan]

There probably are videos out there but most are for subQ

Your practice nurse may be able to help. Know some have been taught by vets where GP/nurse was unwilling. You may be able to get some tips from others but I'm afraid IM isn't something that I've ever felt I wanted to do for myself ...

It may be worth looking at other options - such as sublinguals, nasal or skin patches just to see if those work for you before or as well as resorting to injections.

[deniseinmilden]

Hello!

I self inject daily intramuscularly with hydroxocobalamin bought from versandapo.de via PayPal. I use two needles, blue 23Gx1" for injection and green 21Gx1.5" for drawing up, and 2ml syringes, all of which I get from my vets but are easily available online. I have got my sharps disposal boxes from the Dr's but will also buy them online, probably from Amazon. Some chemists and some councils will take the full ones for disposal, as will many vets.

I take a multivitamin and mineral supplement plus extra folate and potassium which I source from supermarkets. I have been taking methylcobalamin sublinguals which I bought from Amazon.

There are lots of other suppliers of everything online and lots of help available through a Facebook support group PAB12DSupportGroup.

I found lots of YouTube videos of IM B12 injections - many vegans supplement their diets with injected B12 - and there are pictures of injection sites under "images" too.

Also read back through past posts on here.

Good luck!

[clivealive Forum Support]

I know it's impractical and would be totally unethical but I think it a shame that all trainee doctors cannot be (temporarily) afflicted with B12d or P.A. just so that they know what we sufferers go through in the run up to our next injection.

Trainee pilots using a flight simulator can fly an aeroplane without leaving the ground.....

I too had a GP for whom "one size fits all" and wouldn't allow me to have more frequent injections but having joined the PAS years ago and this forum more recently, with what I have learned I have now successfully argued that my physical needs are more important than "what it says on the tin".

Other more medically qualified that I am will reply to your post tiredjan with more helpful suggestions and advice but personally I would continue to "badger" your doctor.

I've had P.A. for nigh on 45 years and I'm still "clivealive" at coming up to 75.

I wish you (and your little one) well for the future

[helvella in reply to clivealive]

As a visitor from Thyroid UK, can we also thyroidectomise the doctors? And leave them untreated.

[clivealive Forum Support in reply to helvella]

Mmmm!

[tiredjan in reply to clivealive]

Thank you! I want to be more ALIVE! I love life and I want to have fun with my Grandson, but all I feel is tired. I am definitely going to make my feelings better known to my

GP

[Marz in reply to tiredjan]

Have you had your thyroid tested ? Often Low B12 and other nutrients go hand in hand with low thyroid.....

Sometimes GP's say normal when they mean in range - BUT - it is where you are in the range that is important....

Happy to help if appropriate

[Sleepybunny]

Hi tiredjan,

Do you have a diagnosis of PA (pernicious Anaemia)?

"my GP will not give me my injection when I feel I need it, "

I found it helpful to talk to Martyn Hooper, the chair of the PAS. If you leave a message he will gte back to you within a few days.

pernicious-anaemia-society....

01656 769717

How many loading injections did you have when you first started having

B12 injections? Patients don't always receive the recommended amount of loading doses.

Do you have any neuro symptoms? See symptoms lists below.

pernicious-anaemia-society....

See Symptoms Checklist.

b12deficiency.info/signs-an...

The treatment for those with B12 deficiency and neurological symptoms is more intensive than for those with B12 defiicency without neuro symptoms but sometimes those with neuro symptoms and B12 defic only receive the standard treatment. The info the GP needs is in the BNF (British National Formulary) Chapter 9 section 1.2

Link below has similar info to BNF.

patient.info/doctor/pernici...

See Management section.

Info on treatment and diagnosis can also be found in the "BCSH Cobalamin and Folate Guidelines" which came out in 2014. I was told the NHS should be following these BCSH Cobalamin guidelines. I found page 29, a diagnosis flowchart useful. Some GPs are not aware of the existence of the BCSH Cobalamin Guidelines .

In some areas local guidelines are being followed, some of which have not been updated since the BCSH Cobalamin Guidelines came out. Cobalamin is the scientific name for B12.

One thing I have learnt from my personal experience is to always get paper copies of my blood results as what I was told over the phone or face to face was not always what was on the copy. I look carefully at folate, ferritin, b12 and FBC (Full Blood Count) results. On the FBC, high MCV and high MCH can indicate the possibility of macrocytosis which is sometimes found in those with B12 deficiency but not always.

patient.info/doctor/macrocy...

patient.info/doctor/full-bl...

patient.info/doctor/folate-...

patient.info/doctor/iron-de...

b12deficiency.info/b12-test...

martynhooper.com/

b12d.org

useful books

Could It Be b12 by sally pacholok

What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Up to date book about B12 defic and PA. Came out in Oct 2015. I gave a copy to my GP.

I have written some detailed posts recently. if you search for them there may be some useful info on them.

I am not a medic just apatient who has struggled to get a diagnosis and wants people to have useful info.

[cgregg718]

i don't know if you have tried b12 patches, but they work really well! You can get them on the Dr. Leonard website for a reasonable price.

[davidpa]

I understand your frustration. I self inject and I use a 1ml diabetic needle I am lucky that I am quite skinny so I can get into a muscle this way. I need it every 2 weeks at least or life becomes a burden. My arms and legs feel like lead. It took me a long time to establish a routine and I still have arguments with my various GPs over it. I have to cheat the system to stay well.

Good luck

Davidpa