Self injecting query

[Sparklingsunshine]

Hi Thanks for the responses, I've seen lots of stuff on here about self injecting, is that an NHS thing? Do you get the B12 and needles and are supported by your GP and are shown how to administer it? or is it self sourced injections. Please let me know.

[Nackapan]

I'm a mix.Buy my own syringes needles ect.

Prescribed b12 ampoules.

Akso I buy online ftom Germny.

I do subcutaneous injections ay home.

Alot do IM

Self taught or shown by a nurse

I have IM at the surgery

I self taught sc as off licence and nurses wouldnt / couldn't show me.

My husband diabetic doing 4 sc a day .

Although more volume with b12 locatons on the body tge same.

Main thing is safe practice .

[topazrat]

I get an injection every three months at my G.P. and inject myself between with equipment that I have bought myself. I'm a nurse, so knew how to inject - I'd been giving B12 injections to others in my job for many years.

G.P. wouldn't give injections more often than 3 monthly, even though I obviously needed more frequent jabs. So after asking every doc in the practice, and getting same answer, I started self injecting. The practice nurse knows that I self inject, but I've never told the doctors, although I would if the subject came up, I have no idea if the nurse has informed them or not.

[wedgewood]

No support or help of any kind from doctors . I told my doctor and now I don’t get the NHS b12 injection . My doctor told me that B12 was toxic ! I watched videos on u tube ( some are awful !) I’ll send you some info

[Capri2020 in reply to wedgewood]

Could you please share the links? I'm very interested to pick up some good tips as you say some videos are just naf.. Thanks 🌸

[Narwhal10]

Hi Sparklingsunshine,

I get my 1 injection from my GP practice every 12 weeks but I like to be able to walk without tremors, feel my legs, have bladder control. There’s some symptoms I can’t shift YET like tinnitus but there’s hope.

I self inject. B12 shipped from Germany and my needles, syringes, sharps box from a UK company.

Support from GP - I went private and changed NHS practice. Long story. 😊

[Sleepybunny]

Hi,

Several years ago, I was forced to treat myself as NHS refused to treat me despite me having over 40 symptoms associated with B12 deficiency and a previous below range result.

When I realised I was headed for dementia and spinal damage, I knew I had to treat myself...I already had dementia type symptoms and symptoms affecting my spine.

These days I do get some NHS treatment.

In the past I did tell GPs I was treating myself and if asked if I was still treating myself now I would say I only treat myself between NHS injections when neurological symptoms start affecting my spine.

For me this is often.

I source my own equipment and B12 ampoules.

Be warned that some GPs and nurses do not respond well if patients admit they are self injecting B12.

Some UK forum members have asked to be shown how to self inject their NHS prescribed B12 ampoules. Some GP surgeries might be reluctant to do this.

The person who runs the B12 Deficiency Info has been campaigning to get B12 ampoules available over the counter in UK.

change.org/p/dr-june-raine-...

[Katanaqui]

I get B12 on prescription from my GP (Hydroxocobalamin 1mg/1ml vials every other day), and a sharps box, but in my experience they can't prescribe everything else you need. It was a long fight to get the correct dosage from anyone as well during a time when I couldn't see my usual GP.

My first injection was given by a nurse at my GP surgery. This is a good idea if you've not had B12 injected before in case you have an adverse reaction to it (very unlikely, but it's just a good idea with any new medication). My nurse was surprised when I declined a second appointment and said I was going to self-inject - she asked which GP had authorised it, but after I answered, showed her the needles I'd already bought, and explained that I'd previously been trained to self-inject in the thigh for a different condition, she let me go. I think she would have given me some instructions had I not known how to inject at all - she did answer a couple of questions I had about using my arm instead of my leg.

Try medisave.co.uk to buy needles and the like, they're great and a trusted source. I use the BD brand ones: 2ml syringes (even though my B12 is 1ml - I find them easier to hold than 1ml syringes as they're typically long and thin) that come with 23g (gauge) 1" (long) needles already attached (the SKU is 307740). I also buy a separate pack of 25g 1" needles; I use the 23g to draw up, and then swap the needle to a 25g to inject. The length of needle (to the best of my knowledge) is appropriate for IM in either my arm or leg, and either gauge is suitable for B12. I only ever inject 1ml into my arm, although I think you can inject a larger volume into the thigh if your B12 concentration is different to mine. Hope that helps

[newlandvale in reply to Katanaqui]

Hi Katanaqui. How did you manage to get Hydroxocobalamin prescribed every other day? I presume you are in the uk and not seeing a gp privately? I am wondering if I have one of the adult onset genetic defect type deficiencies as a bone marrow biopsy showed hypocellular with moderately reduced erythropoiesis despite 8-weekly injections. NHS injections were grudgingly increased to 6-weekly. Genetic defect B12 deficiency is treated with a minimum weekly injection but is usually diagnosed in early childhood. I am trying to summon up the energy for another fight with gp!

[Katanaqui in reply to newlandvale]

Hi I very nearly didn't. It's only because I was able to ask my usual GP, whom I've been with for several years and who's always been very good at reading up on my other rarer conditions as well.

My B12 deficiency was diagnosed very recently due to Anaemia by another GP while my usual one was away. At first they offered me the standard 3x weekly loading then 3-monthly, but having researched it myself, I've presented for a long time with what I now know to be the associated neurological symptoms. They refused to prescribe every other day despite me showing them the NICE guidelines, the lack of B12 toxicity, etc., because they didn't feel experienced enough doing so and wanted a Neurologist's opinion. I agreed thinking a Neurologist would just ok it - my symptoms weren't contested by the GP after all, they just didn't want the responsibility - but then the Neuorologist told my GP the wrong total dosage because they only inject their inpatients on weekdays in hospital (apparently we aren't B12 deficient on weekends!), they said it was only for two weeks maximum, and when the Neurologist saw me in person shortly after, they referred me to Psychiatry without my consent, because apparently neurological symptoms were nothing to do with B12d and I needed to get help!

Honestly it was three months of beating my head against a brick wall until my usual NHS GP came back - they caught up and reviewed my assessment, looked up the correct dosage in the guidelines, prescribed it, also ordered an MRI to check the extent of my SACD, and are now reviewing me once monthly while we're trying to find a more suitable Neurologist to followup on my MRI results. I appreciate I'm comparably very lucky to be under my GP's care, it's not the first time they've been the only reasonable and knowledgable voice involved in my treatment.

Right before my usual GP returned, I made a document stating everything I knew to be correct about B12d, including sources, and I was prepared to send it to my GP practice manager. I still did in the end, but after I received my prescription just so that the information was forever available on my file. I'm sorry they're being as difficult with yours. If you do have the fight in you, I would politely but firmly request that they explain in writing why they are going against NICE guidelines of prescribing you the correct dose. If necessary, also ask if they're prepared to take responsibility when their lesser dose results in irreversible neurological damage. I'm starting to find that more of my doctors concede when asked to defend their wrong decision and they can't, than they will listen to me trying to show them the correct information.

There's also the PA Society website, who offer to write to GPs with information etc. if you become a member. I didn't end up using their services, but I was impressed by them and considering it.

Edit: I am in the UK and not being seen privately at the moment.

[newlandvale in reply to Katanaqui]

Thank you for that Katanaqui - I didn't realise the PA Society will write to GP's. I've never had loading doses as it was initially thought (14 years ago) that my vegan-ish diet was to blame.

[SallyRees]

Used to receive B12 injections once a month until covid. I was told they wouldn’t be doing them and I was offered oral B12, which I do not absorb, hence the need for injections.

I now source my own B12 from German

pharmacists and buy my needles, syringes etc from medisave.co.uk

[mcg-woo]

I’m in the US and initially received injections from a gastroenterologist who discovered low b12 in lab work (no loading doses only once per month for two months). My GP took over injections but changed from SC (once per month) to IM injections on a weekly basis as I was very ill after I went without an injection for 3 months. I was taking a new job and needed to learn how to self inject so a nurse taught me and I’ve been self injecting hydroxo obtained by prescription for almost five years with some struggle over finding an injection schedule that works for me after I was cut back from weekly to every other week. I self inject IM weekly and am hoping to go be able to go 10-14 days between injections but I’m not there yet. Best of luck to you!