Rejected B12 injections at home - Pernicious Anaemi...

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Rejected B12 injections at home

miss90 profile image
31 Replies

Hi everyone, I'm new here and have read a few posts about people trying to get B12 at home. I've been trying to do the same for last month or so from my GP and nurses but the my doctor says it's not up to him it's up to the nurses however all the nurses have refused to give me the injections because it's an IM injection.

I have explained to them I did my nurse training and have done many injections before so I am very capable and I struggle finding time to go surgery due to my work and I have in the past gone over my date by a week because they can't fit me in when I'm available so I would benefit from having injections at home to do myself.

Any advice on how I can get round this? Thank you

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miss90
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31 Replies
LowB12 profile image
LowB12

I’d be interested to see what people’s thoughts are. I’m just about to tackle GP about getting treated and will be injections, as don’t seem to be absorbing thus tablets won’t work. I may have wrongly assumed they would be happy for me to do them myself...no way I could make alternate days for loading!

wedgewood profile image
wedgewood

You could do what do many people do here ,and buy Hydroxocobalamin ampoules from German online pharmacies . They are tightly regulated by their health authorities , and the ampoules that they sell are commonly used in surgeries here in the U.K. ( b12 ampoules are sold OTC in Germany ) Buying everything in bulk —ampoules , needles and syringes(x100) , an injection need not cost more than £1.00 . As a nurse it would be a doddle for you ! And what a benefit for you as well .

miss90 profile image
miss90

Thank you however if I don't tell my GP that I would be self injecting then they would eventually stop my yearly bloods as my levels would be "normal" with no explanation.

Gambit62 profile image
Gambit62Administrator in reply to miss90

if you are UK based then I'm not sure why they are doing yearly bloods in relation to B12 as the current standards make it quite clear that this isn't needed.

miss90 profile image
miss90 in reply to Gambit62

I've already spoken to them years ago about my bloods and how it's not necessary as they can't monitor my b12 from my bloods they can only monitor from my symptoms. They wouldn't have any of it.

Gambit62 profile image
Gambit62Administrator in reply to miss90

if doctors would stop wasting money on unnecessary tests ....

Did you point out that the national standards are not to test B12.

miss90 profile image
miss90 in reply to Gambit62

I did yes I even showed them papers I printed out

Seaspray1998 profile image
Seaspray1998 in reply to miss90

Would you rather let the nerve damage, organ etc damage continue on?

As without the frequency of b12 injections that YOU need (not as determined by yr idiot poorly trained doctor) that is exactly what will continue to happen

And GP cant test once yr m b12, as it takes 4mths for b12 to leave yr system, so the test will be totally skewed

If you want blood tests, you can do yr own very easily, so dont need yr GP, but again not for b12 for the reason Ive already stated

miss90 profile image
miss90

I think I need to speak to them again and if they decline me to self administer with their approval then i will tell them I will be forced to self administer through other options so will be safer and easier for them to allow me to do it, this way I can keep my yearly bloods I hope.

Polaris profile image
Polaris in reply to miss90

In view of your training, it seems unreasonable to refuse to allow you to self inject, especially as many of us on the forum had no choice and do so successfully in order to have a life rather than risk disability and permanent neuro/psychiatric damage....

I don't know if it's any help but, when my usually excellent GP wanted to reduce my thyroid medication, even though this was the dose that finally kept me well, I told her I would accept full responsibility for continuing on this dose - in writing, if necessary. She was then fine for me to continue.... Many GPs are more concerned with being sued nowadays than keeping you well I'm afraid.

The Dutch link below (No 5) explains why symptoms and not blood levels are used to monitor deficiency once injections are given as blood levels will normally be high regardless of whether treatment is effective

stichtingb12tekort.nl/weten...

Good luck for more treatment miss90.

fbirder profile image
fbirder

I told the nurse that did my third loading dose that I would like to inject at home to save my time, their time and the NHS’s money, and could she show me how to do it.

No problem.

So I went to the surgery for my next injections and she watched me do it myself (even asked if a student nurse could watch the last one). After that I got my ampoules from the chemist to inject myself.

miss90 profile image
miss90 in reply to fbirder

wow you was lucky, if only everyone had it that quick and easy and had such understanding nurses. well done

SORRELHIPPO profile image
SORRELHIPPO

My GP gave a prescription to get the B12 from the pharmacy, the GP left the required needles etc at the desk in the surgery for my Carer to pck up, and the Sharps box, I think came on the prescription. All this came about because the District Nurses decided that my reason for being housebound at the time was a lie (they did not visit me, do an assessment or even discuss this with me over the 'phone). The reason was I had gone into a total Crohn's Disease flare, on the loo with diarrhoea up to 14 times in 24 hours. I had a telephone consultation with the senior practice GP, who wanted to know why a district nurse had basically told him to sort out my B12 injections as I was lying about being housebound, another GP had asked the DN's to do it at my home. I was so angry I was almost crying. I said having lost over a stone with the Crohn's, being as weak as a kitten, (dioralyte 6 or 7 a day, very warm weather, even standing to boil a kettle a problem) I would need to pay 2 carers to get me down the stairs (and up again) from my flat. Use a cab, who would refuse to ever carry me again if I had an accident in their cab, and did he want me in his surgery, with a high likelyhood of having a problem whilst there. If I needed to use the one toilet on his floor to change, it could be blocked for about 20 mins, also has no rails. All the inco knicks/pads in the world are not 100% secure. Finally stress makes Crohn's worse, so trying to this would not be useful for anyone.The GP just had to sort something out, so this was how he did it. However the phlebotomists have a different view of my problems, when I am bad they do the 3 monthly test at my home.

None of the Nurses, Practice or District have refused to give me an injection because it was IM, in fact 2 years ago, when I had the same problem, the DN's did it for me at home!! It sounds as though they are all just passing the buck, or maybe hoping you will go the route of paying for the stuff yourself, to save money. Good luck

JanD236 profile image
JanD236

Surely the doctor is senior to the nurses so I would try again with him/her.

SORRELHIPPO profile image
SORRELHIPPO

Am improving and have a Drs apt booked for the 20th. with one Carer to get me in/out. Half my probs. with the particular episode, was that I was an Occupational Therapist, mainly in the Community, so was used to spending lunch breaks in the DN's local office, talking about our more complex cases, doing joint visits and stuff like that (sharing black humour) sorting out who would order what, "I'll do the rails and loo, and do Social Service link, if you do the bed/mattress and we will discuss the hoist" type conversations, so I was stunned more than anything about the response, it seemed so out of character. I am getting a little of the grouchy Victor Meldrew, am 66 and am finding myself thinking "it was better in my day" so will go and have a giggle at myself.

Bernieboo15 profile image
Bernieboo15

I think if you are not housebound you shouldnt expect a home visit just because you are not available. My GP was fine with me doing my own but they gave me a script which inthen had to pay for, if you go into surgery its funded by GP, so you could write to the practice manager and explain, The other option would be to buy it yourself and self inject it.

Fatigueisme profile image
Fatigueisme

I just bought the ampoules from Germany and got some needles from a local physio who also administers VB12. The ampoules cost $40 for 100 and I was given the needles, so I probably have a years back up supply for about 30p per injection, that's why I can't understand all the fuss around having to force the Dr's to give injections rather than tablets (which I had to do). This must be one of the cheapest immune diseases to medicate in the UK but when the symptoms are bad ( I had all the neurological symptoms) its very debilitating.

That's why this website is a Godsend, I learnt more on here in a few days, than at any of my GP consultations, which took months whilst waiting for blood results and follow up appointments.

Jojogaunt profile image
Jojogaunt

I buy my b12 from goldpharma.ca, insulin syringes (fine orange ones) from medisafe or BD and inject myself at home, I gave up on gp surgery.

Take control of your own health, they are their tonadvise you, you don’t have to do what they say, it’s your body & your health, take control yourself.

miss90 profile image
miss90 in reply to Jojogaunt

very true. I will try and speak to them one last time and if they still refuse then I will just buy my own. Thank you

in reply to miss90

Hi there,before you buy needles,just check that the orange fine needles are long enough to inject into the muscle.They are usually used for sub cutaneous injections (under the skin) .Good luck!

That is strange miss90. My daughter had problems like you and when she first asked, a long time ago, she was refused then suddenly it became very easy and they gave her the equipment and a pack of ampoules and off she went, never looking back, until the mindless idiot of a partner in the practice got it wrong and only issued a script for a single dose. That was soon sorted. (They do issue the so called safety needles but we sorted that)

When I began needing injections 3 years ago the nurse at the second of the top-ups asked if I felt I could do it myself. I agreed so she carefully showed me with that one, then with the next went along with me doing it finally she gave me the kit and let me get on with it. Now, seeing as how they don't feel able to 'break the rules' and can't support what I need I just accept the 5 a year, get the rest from Germany, and buy my own equipment from Medisave in UK. Don't bother arguing with the practice, it isn't worth the trouble, DIY.

dianewilson1900 profile image
dianewilson1900

Ask to speak to your doctors attending doctor. He or she has the authority to make these decisions more than anyone. Your doctor is pulling a line of bullcrap on you. My doctor gives the nurses authority to give me injections at the hospital, so your doctor can too, and the nurses give it to me IM, in my arm. None of these medical professional workers are being honest with you. Even though your in the same profession, legally, they can't let you give yourself your own injectionsions at the hospital. At home it's ok though. (That's the law here in the US where I live. I don't know about the law in Britain). Your doctor probably just feels you don't need the injections and is just too much of a coward, and doesnt have the balls, to tell you. He's also telling the nurses to go along with his dumb game. I beleive you when you say you have low B 12 symptoms, I've been there, but this doctor is full of crap. Their spinning you around in circles trying to confuse you, that's what I think. Try to find the department at your hospital where you can file a complaint and again, go to the desk where you register prior to seeing your doctor and ask to speak with the attending doctor. If they ask why, just say its personal and give as few details as possible. If they press for details, say it's in regards to your B 12 injections because sometimes they cover for staff. (I've ask to see attending doctors myself, so I the game)! Don't ask your doctor to speak to the attending doctor, He will never let you do so because he knows he's in hot water...good luck. Keep us posted.❤❤

bdole2018 profile image
bdole2018 in reply to dianewilson1900

I think in this case it is a gp surgery (family doctor practice) rather than a hospital. In my experience it is often easier to buy the b12 ampoules online and self inject. Personal import is fine as it is not a controlled drug.

miss90 profile image
miss90 in reply to dianewilson1900

i go to my GP surgery not the hospital to have my injections usually

Bernieboo15 profile image
Bernieboo15

I was replying to the original post from miss90 who said she was unable to get to GP due to work commitments. Therefore, is not housebound. No mention of bowel issues in that post.

miss90 profile image
miss90 in reply to Bernieboo15

I never said anything about being house bound I am very able, I just don't have much time due to working 12 hour shifts 12 days in a row and only having everyother weekend off that's why I want to do my b12 at home as it's easier for me.

Bernieboo15 profile image
Bernieboo15 in reply to miss90

Well if your GP wont let you do your own your only options really are to buy your own and self inject or change GP.

bdole2018 profile image
bdole2018 in reply to Bernieboo15

Then I do apologise. It's hard to see who is saying what on this mobile version. Miss90's point does stand though. There is no credible reason whatsoever for her go not to simply give her a NHS prescription for the ampoules. Im injectable medication is prescribed every day on the NHS by gp's for patient self a administration. Nothing in rules or regulations would prevent this. If your gp is making you pay for a private prescription to get b12 to administer yourself then the gp is making up nonexistent policy. Possibly because a nurse run injection appointment is a nice earner from the primary care trust.

dianewilson1900 profile image
dianewilson1900

If buying online is cheap and adorable, maybe that is the easiest route...the staff your dealing with don't seem to be of much help...

Ken-ard20 profile image
Ken-ard20

I started get mine from company called horizon a nurse comes to your house you given overhaul taught how to do it.cost 79quid.

I had part stomach and bowel removed my hb is 9 I have under active thyroid test showed I low but he only do follies I ask for b12 only blood but refused.I feel like crap.The nurses work all over country

Blueeyes57 profile image
Blueeyes57

Hi. My nurses refused too. I decided to self inject and with help of b12 website that hard goods information I have been injecting IM FOR PAST TWO YEARS (alternate too what go have me as symptomatic after 4 weeks) so now will just do it myself monthly. Itt is scary initially but the relevant materials are easily available and the same b12 ampules can be sourced from German pharmacy online all legitimate. I get Rotoxemedica same as doctor uses. I feel the GPS just want way out of providing this and I am not hopeful the provision will be re-established so I am prepared! Itt is not expensive and well worth it in my opinion but we shouldn't have to do it.

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