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No self injections allowed

barbegrub profile image
24 Replies

I had phone appointment with practise nurse who diagnosed my PA. I asked if she will give me 6 weekly injections. No. I asked if I could have 8 weekly. No. This is not in the guidelines. What guidelines are they? NICE. But NICE guidelines say 8 weekly. Still cant agree to more frequent injections.

Now thinking, naively, that she or a nurse might teach me, ok stay on 10 weekly, then I SI after 5 weeks, then back for health centre injection. I thought best of 2 worlds, 5 weekly injections. She exploded, if I self inject she will stop my injections completely. Unable to sanction this. Terrible cos I've no experience. A bit angry because she has given me blood tests and really put herself out for me. She will be speaking to the Practice Manager about it. Again, if I SI my b12 will be removed. I want to stay with this health centre. Been there all my life. Well you'll still be a patient but no b12 treatment unless I guarantee not to SI. I didn't agree so we parted ways.

Minutes later practice nurse rang back to say she will agree to 8 week frequency b12 if and only if I promise not to self inject. I agreed but I'm not comfortable with this 'coercive' manner. I've already told her b12 is helping my anxiety and wouldn't it be great if I could be well enough to come off antidepressants. Outraged again, I cant use b12 for my depression. I only said it seemed to help me.

So I will give 8 weekly a try. But I'm already so low and injection not due for another 3 weeks.

I have a feeling I might regret my promise.

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barbegrub
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24 Replies
Greypaws profile image
Greypaws

I am sorry to hear that you have had such a difficult time. Unfortunately sometimes healthcare workers forget that treatment is best done as a collaborative effort between patient and person giving them treatment. Her attitude towards you is not acceptable - anger, trying to make you feel guilty because she’s done her work just for starters. It is important that you ask questions. Maybe you need to talk to a doctor.

Depression is a recognised consequence of B12 deficiency and any doctor worth their salt would want to treat the cause of depression rather than give antidepressants. Antidepressants are very effective medications that alleviate depression but if you have a treatable condition that is causing (or even possibly causing the depression) it is appropriate to consider a trial of adequate treatment.

But it sounds like you have had a rough ride and maybe need to take things slowly. If you have the injections 8 weekly what residual symptoms do you have? Will it be enough for you without damaging your health further?

barbegrub profile image
barbegrub in reply to Greypaws

Thank you. It's useful to hear another opinion. I am an anxious person and this experience has triggered this, a lot.

deniseinmilden profile image
deniseinmilden

I'm so sorry you have been treated so badly. It's hard enough to cope with that sort of behaviour when you are well, without being ill and it being your life.

Bother the "promise" - it's no promise if given under coercion for the sake of your life, just a white lie to make them feel better, which is a kindness in itself!

A true promise is a chosen act of altruism on your part for the benefit of others.

It's your life and you have a responsibility to yourself, and others around you, to do the right thing - and you know, as well as we do, the right thing is to correct your obvious deficiency.

If it was the other way around - you were perfectly healthy and they wanted to give you an injection that made you muddled, depressed, anxious, more prone to nerve damage, cancer and goodness knows what else, then I very much doubt you would trot along to them and meakly accept it.

You have to protect yourself and if that means getting canny and learning to answer any future questions from them with only part truths then so be it.

I have had to self inject daily for 5 and a half years because I was messed about over my injections. I have suffered terribly and all but lost the ability to look after myself because the health service failed me on B12 - I went for years undiagnosed and even when my dentist and a pharmacist helped me they still took nearly a year to treat me and wanted to cut my injections.

Under one nurse my Dad could have his injections when he needed them, before his symptoms came back, and he gradually improved and was doing well but when she left they would only do them at 12 weeks and he declined again. Someone else intervened and said he could only have tablets, whereby he went downhill rapidly and ended up in hospital. In ICU they saw the problem but it was too late by then and he died.

Please don't be frightened by this but do accept that you are right - you do need the treatment and you can't not do it to "please" someone - it's not their life, they won't suffer every day. In effect you will be protecting them by saving them from their ignorance.

Let them do whatever frequency they see fit and just do whatever extra jabs you need to be symptom free. If they ask you if you have self injected in between you don't have to lie, just say something like "I heard what you said" or, even better, look slightly aghast at their suggestion and say, "but you told me not to!" which is perfectly true - that should keep them quiet and your conscience intact AND help your body look after itself!

My lot forbade me to take the additional supplements that I couldn't survive without but in the end I had to, to carry on - and since then I have seen a different medical team in a more advanced hospital and they support what I've been doing and ran tests which show I'm still low!

Good for you for wanting to do the right thing - I hugely admire you for that. May it all work out OK for you!

Litatamon profile image
Litatamon in reply to deniseinmilden

"Under one nurse my Dad could have his injections when he needed them, before his symptoms came back, and he gradually improved and was doing well but when she left they would only do them at 12 weeks and he declined again. Someone else intervened and said he could only have tablets, whereby he went downhill rapidly and ended up in hospital. In ICU they saw the problem but it was too late by then and he died."

I am very sorry Denise. It makes me so angry.

barbegrub profile image
barbegrub in reply to deniseinmilden

Thanks so much for this. I am inclined to agree with what you're saying. It makes sense to be at least trying to get myself well. If I wait for this practice to help I could be nearly bald by then.

Litatamon profile image
Litatamon

"....but do accept that you are right - you do need the treatment and you can't not do it to "please" someone - it's not their life, they won't suffer every day. In effect you will be protecting them by saving them from their ignorance."

barnegrub,

Denise's guidance here is so bang on. Highlighting it again, for you and for others struggling with their GP and/or their medical staff.

While I was going through my loading doses late last year I clearly remember looking at my doctor and silently saying in my head, "It is not her life if she is wrong. " And in that moment I decided to self-inject and have never looked back or questioned my decision.

I still go in once a month for my shot at the doctor's office. I don't see my doctor enough to be much of an issue. But my regular nurse brought up a bruise on my injection area (long story, laughing) and I just said, "mmm hmm' and nothing more.

When my doctor saw that my serum level was high she asked did you just have a shot (she doesn't do them). I answered, "mmm hmm"

And then I turned it on her and asked why oh why she was still checking serum levels. Sigh.

Denise's post is pure gold. Take it in and do what you need to do. All the best.

deniseinmilden profile image
deniseinmilden in reply to Litatamon

Thank you for both your lovely comments! X

barbegrub profile image
barbegrub in reply to Litatamon

Thank you. I agree with that. Its reassuring to have this support.

I’d just take their injections and SI as and when you need to or want to. The health service doesn’t own any of us. They want us to take responsibility for our own health when it suits them. Go with what is right for you and forget any pinkey promises.

barbegrub profile image
barbegrub in reply to

I think you are right. Thank you for this.

lifegems profile image
lifegems

You will feel much better when you take control.. it’s amazing how many medical professionals have such limited knowledge about P.A. but when challenged think they are the authority..I’ve even ended up having “debates” with the ruddy Dr’s receptionist! Your only responsibility is to yourself .. maybe ask her why she is so against you SI and what she thinks the consequences will be ? Or probably better to just ignore her and look after yourself.. good luck

barbegrub profile image
barbegrub in reply to lifegems

Thanks for this reply. It's so good to be able to speak about b12 problems to people who understand.

lifegems profile image
lifegems in reply to barbegrub

Yes I know ! It does affect us all differently I think .. but I’ve lost faith in the medical profession when it comes to P.A. .. but then we can’t expect them to know everything about all conditions.. but it can be frustrating.. I’m so pleased I took the decision to listen to what my body needed and took control .. it’s empowering.. you won’t regret it

barbegrub profile image
barbegrub

I was stunned. She didnt ask about symptoms at all. I feel guilty that I have posted about her. But the discomfort at not SI is worse, so I am still wanting to try this. Thanks for your helpful reply,

Greypaws profile image
Greypaws

Hi again,

Last night I was tired and just wanted to be supportive. Today I have woken up. Sorry if thus is a bit repetitive and has been said already but I have to get it off my chest.

1 Health professionals can’t know or remember all guidance. It’s okay to say ‘I will need to check that’. It’s not okay to get guidelines wrong. It seems she did recheck them but she still owes you an apology.

2 Sticking with guidelines. They clearly state ‘alternate day injections should be continued for neurological symptoms until symptoms improve or stabilise (ie permanent damage has occurred)’.

Depression is a recognised consequence of B12 deficiency. Mood changes, cognitive impairment and peripheral neuropathy are all neurological. Therefore if you decided to self inject even up to a frequency of alternate days to treat your depression you would be following NICE guidance (seen nationally as best practice).

3. To say to someone - if you do that I won’t give you life saving treatment - is in my opinion totally unacceptable.

If she thinks what you want to do is unsafe then she should explain why and she should also explain why she would be unable to treat you if you did that. She wouldn’t be able to. In 70yrs of people being injected with B12 there are no confirmed cases of overdose so it would not be dangerous for that reason. Plenty of surgeries teach people to self inject so that they know it is being done safely. It’s not difficult anyway.

4. I also totally agree with everyone else that a promise extracted by using a threat is not binding. It’s unpleasant to be put in a position of having to lie but if you feel self injecting is in the best interests of your health your choice is ....... well I think pretty obvious!

5. Being angry with you because she has put herself out to basically do her job and you are not being sufficiently grateful by blindly following what she tells you to do is a reflection of a VERY bad attitude some health professionals (definitely not all) have towards patients - simply put a total lack of respect.

Also healthcare premises rightly demand that patients treat their staff with respect - patients should expect that to be reciprocated.

Generally speaking when someone behaves like this nurse did to you it shows that they lack confidence and are out of their depth. Which is still not an excuse to behave badly.

7. At the end of the day it’s your health you have to decide what is most risky - taking matters into your own hands or accepting inadequate treatment (there is lack of hard evidence but PLENTY of anecdotal evidence that waiting for symptoms to return before the next injection is damaging to health in the shorter and longer term).

Also there must be an official realisation that 8-12 week injections maybe insufficient as the guidelines suggest indefinitely continuing alt day injections if neurological symptoms present!

Unfortunately this disconnect between what B12 patients think they need and their doctors think they need is long standing and not going to resolve in the near future. I decided to self inject as trial of treatment first and then second to try to change the way my surgery treats people with B12 (when I have had enough injections and feel up to the challenge 😊

Best of luck with whatever you decide to do. This forum will always be here to support you!

(Phew! Sorry! Got a bit carried away there)

wedgewood profile image
wedgewood in reply to Greypaws

Excellent response . I award you a medal 🥇no , 2 medals 🏅

Greypaws profile image
Greypaws in reply to wedgewood

Thank you! 😊

barbegrub profile image
barbegrub in reply to Greypaws

Please don't be sorry. You've given me a lot of support and common sense through your reply. It makes sense now. I'm still not confident but I know I need to decide quickly because foggy brain, hairloss, sore legs, poor balance etc are all present again now. Thank you.

Cherylclaire profile image
CherylclaireForum Support

I had my NHS injections stopped because I made the mistake of seeing another GP while my own GP was away on holiday.

I couldn't wait for her return so went to this new GP with a heart problem. Once he discovered that I was self injecting B12 every other day, he freaked out, heart forgotten, and I could tell he couldn't wait to get rid of me so that he could run down the hall and tell someone else ! The letter from him duly arrived: NHS injections being stopped , a practice meeting decision, unless I give up self injecting and go with their 1 injection every 2 months.

All done without my GP's knowledge: she was still on holiday.

I was initially furious- but in the end I didn't reply:

I really couldn't be bothered to try teaching people who don't think I'm worth the listen.

Why the panic ? I don't know. I'd had a diagnosis of functional B12 deficiency- and previously been given 2 reloading injections a week for six months at that very same practice.

How did I get such a diagnosis ?

My GP realised that I was deteriorating on the maintenance dose, had my MMA level checked (raised) and her diagnosis confirmed. She was advised to restart loading injections until no further improvement could be had. Although these were supposed to be every other day, the nurses could only manage 2 a week - quite reluctantly, it has to be said.

I did improve initially, but deteriorated again six months later - so these were reduced to one a month, and later a haematologist advised my GP against giving me more than 1 injection every 2 months "as per guidelines". This haematologist told me that B12 was highly addictive and toxic. The consultants who test DNA later told me that their advice for those with an inherited inability to use B12 at cell level - 2 injections a week - is often ignored by GPs.

What a mess !

Did I do the right thing ?

Well, how can you be sure? My current blood tests are the best they've been for 5 years, my MMA finally dropped to within range last year at the 6th test, a lot of my symptoms have reduced in frequency and severity, some are now rare - I never say "gone" because it seems a little jinxy. I'm having a Dexascan next week to check if my osteoporosis of the spine has improved. I'm hopeful.

Without the help of the people here - deniseinmilden , Sleepybunny , Gambit62 , clivealive , Hidden , wedgewood , Marz and others - and the support of my GP, I would never have got any of this back.

You weren't being naive, just honest. It pushed the practice nurse into giving you the treatment that guidelines suggest. For many of us, this isn't enough. Why that makes anyone, apart from us, angry, I have no idea !

I told my GP that I self inject, the day after I did my first injection. By then, she'd sent me everywhere, requested all the tests, seen what this can do, what it costs, what it takes to get a life back - and was fine.

Greypaws profile image
Greypaws

Just had another thought. If you don’t like lying. Officially retract your promise. Write to the surgery (to the nurse copied to practice manager and GP);to say it was made under duress. Do not say whether or not you plan to self inject. You can say you haven’t made up your mind at that point if you want. And then drop the subject and don’t tell them if you do. But write that you wish the practice to continue to give you 8 weekly injections as per NICE guidelines.

If you have an official diagnosis of PA then without treatment you will die (eventually) so if the surgery refuse you treatment they are refusing life saving treatment. I think they would find that hard to justify.

Litatamon profile image
Litatamon

"I was stunned. She didn't ask about symptoms at all. I feel guilty that I have posted about her. But the discomfort at not SI is worse, so I am still wanting to try this. Thanks for your helpful reply,"

Missed this yesterday :

I too felt a bit guilty talking about my doctor - and other medical professionals - on here, when I was first diagnosed. I no longer do. Hope that leaves for you too.

Your post reminds me where most of my frustration lies - with the health of people that come after me. How we are often blocked from helping those who come after us as well. Early on I was asked about symptom changes, I got three in! She stopped and told me that my eye changes had nothing to do with b12. I told her it is absolutely a b12 documented symptom (How is that my job to know that AND she has the ability to say "Let me check on it" as obviously she didn't know. )

She did not back down and told me once again it truly doesn't have anything to do with b12 and insisted I see an optometrist, to get help with it. I told her of course I would regardless.

And yep - the eye issues disappeared with loading doses.

And then my doctor asked with frustration can we just concentrate on fatigue. That is all some health professionals think this is - fatigue and get the shot and voila. That, among other frustrations, is what truly makes this a public health scandal.

I had over thirty symptoms. How assinine that you don't want to know what they are for the rest of your patients' well-being! I made sure that those thirty plus symptoms went into my file via my naturopathic doctor sending paperwork to my gp. Even my naturopathic doctor suggested we just concentrate on getting a test instead of listing all of the symptoms, because most of them are gone. I said "hell no - there are many after me and if it just makes her catch one case! (She was new to me in her defense but regardless I found my own issue, after years of suffering.)

How absolutely assinine to not want to know symptoms for all those who come after us!

As well as our care, of course.

Thank you barbegrub! I thoroughly enjoyed that trigger!

😆👍

barbegrub profile image
barbegrub in reply to Litatamon

Great and helpful reply, thanks.I know a big part of trying to get b12 PA taken seriously is for my family and their families. It's also to safeguard any others who might get this condition, it would be such a relief if it was understood and well treated.

Sleepybunny profile image
Sleepybunny

"If I wait for this practice to help I could be nearly bald by then. "

I battled for years to get treatment from one GP practice. I had multiple typical symptoms of b12 deficiency but apart from one set of 5 or 6 loading doses, treatment was refused on several occasions.

I wrote letters to GPs and pleaded with them to no avail. In the end, pressure was put on me to leave because they were fed up with me.

When I realised I was headed for dementia and spinal damage, I chose to self treat and many of my symptoms improved or disapppeared.

I wistfully think of the life I could have had and my family could have had if I had treated myself sooner.

"I'm not comfortable with this 'coercive' manner"

In retrospect I should not have stayed so long with a practice that treated me so badly but I was so ill and it was the easiest one to get to. I was shouted at on one occasion.

Changing GPs

nhs.uk/common-health-questi...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

PAS can offer info and support.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

The person who runs B12 Deficiency info website may be interested in your story.

b12deficiency.info/

barbegrub profile image
barbegrub in reply to Sleepybunny

Thank you. Its comforting when we find out we're not alone. Useful to hear your history. I will check out these links and hopefully get up the strength to stand up for myself. Thanks.

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