Good Morning everyone, I have just had a call from my Dr’s surgery asking me to make an appointment,, as they want to talk to me about putting me back onto three monthly injections, currently I have been lucky enough to receive injections every month.
I honestly struggle to even make it through the month without the lethargy, exhaustion, bad moods, feelings of depression the list goes on.
A little bit about me before I was diagnosed with PA, I had chronic exhaustion. My hair fell out, I thought I had dementia, Could not get the words out that I wanted to say. Symptoms of depression. Severe weight loss. Tingling in my fingers and up my arm, honestly thought it was symptoms of a pending heart attack. Easy for me to loose my temper and being short with my kids.
All these symptoms I took to the Dr and after some time I was finally diagnosed.
May I also add I am a single mother, I have a son who has cerebral palsy, and a son with autism. When I speak with a dr they seem to think my exhaustion is down to having a disabled son, which is not true. We have our routine and it works. (He is 21)
I am now waiting for a Dr to call me back I do not think they realise the impact that taking me back up to three monthly injections is going to impact my life. I’m sitting here in tears I hate that the PA has control over my life, but also know the impact on me mentally physically and the issue with trying to stay awake will have on me knowing I have my boys to look after. I don’t know what to do I feel desperate can anyone advise me please? Thank you xx
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Busymomofsix
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Thank you so much, for your advice. I did loose my temper with the lady that called me , Only because she was adamant I will return to three monthly injections without even considering how this change would majorly impact on my home life.
I have done as you have said and started writing things down for when I get to see Dr. I am also prepared to fight this decision. I have no intention of them making decisions on my life with my PA they seem very matter of fact that they know best in this situation, Only another person with PA knows what I am truly suffering with xx.
I agree what others have said, although the letter you are writing I would take a photo copy for your records and send to the Doctors before you have the appointment, This way your Doctors can digest what is written, and gives you more time in the appointment to address the issues.
It makes my blood boil reading your post, I am on Monthly Injections like you, and the amount of Nurses objecting to it giving me verbal abuse is beyond me.
I now just keep calm ask if I am getting the injection.
Last time it was "Yes, but you will be hearing from me"
That was two months ago, still haven't heard from her, glad to say my regular nurse is back. Injection see you in a month!
Thank you so much for replying to me. I have also had a nurse tell me I should be on injections every three months not monthly and also blaming it on the fact my son has a disability.
I explained that my Dr has agreed to monthly so there should not be an issue
I will be contacting my Dr when surgery re opens at three today , Luckily the Dr that allowed my monthly injections is the one doing telephone consultations this afternoon. There has to be a reason why they are now choosing to overturn this x I will let everyone know the reason later xx
Good luck ..... apparently there is a note on my records stating that if anyone questions monthly Injections refer to me. That just maybe why I haven't heard further!
If the Doctor agrees to monthly could he put a note on the records so that each time you meet with resistance from a nurse you can point this out.
I agree nackapan, We have enough to cope with.I also had a new nurse say I am to have blood test !
I just said fine, but you are wasting NHS money as I am on injections so my blood results will be high.
Like you I have supplies at home, but I keep having monthly injections at the surgery so it's on my records ... if they stop it so be it .... I have wasted enough energy fighting the medical profession who do not look at historical records or notes.
Firstly it’s not the nurses business what medications your on, she’s there to do what the doctors have instructed her to do we don’t have this hassle in Australia because we can buy them over the counter with no script and give them to ourselves 😊
So glad you keep your monthly shots. I got changed from monthly, then two monthly and now the monthly. I've battled with letters to no avail. I inject myself anyway since 2019. I have PA and they ignore the guidelines.
First of all try to reason with the doctor and explain what a terrible impact it will have on your life . Do read the article about Pernicious Anaemia ,M written by our chairman and another expert , that Sleepybunny as provided a link to. If all reason fails , I suggest that you consider self injecting . It is a good and cheap option which I had to decide upon several years ago , when feeling so unwell , and had not the strength to face an aggressive and ignorant GP.
Self injection has saved me . It’s easy and cheap - Cost about £1.60 for an injection which includes everything you need . Might well be cheaper than the bus ride to the surgery ! I will send you the information which I hope that you do not need .
You could share with them this recent report from the British Journal of General Practice: bjgp.org/content/early/2022...
It's a very recent report that highlights how patients with PA and B12D are self-medicating because they do not get sufficient treatment or are made to lose their dignity in asking for patient-centred care.
In concludes with "Providing patient-centred care and treating these patients with dignity and respect is a policy priority to reduce unsafe health behaviours."
You could show this to them and suggest that you do need monthly. And if you move to three monthly you'll be forced to self-inject, which will expose you to unsafe health behaviours. And that this has recently been highlighted as a POLICY PRIORITY by the British Journal of GPs.
I think sometimes we are too reticent with GPs - use this and get their backs against the wall. Make them realise that they are WRONG.
Thank you so much I have just had a read through the report and where it says quality of life, that resonates with me as I will have no quality of life if they remove my monthly injections. Will be bringing this report up with my Dr this afternoon .
The wealth of information I am getting from you all is invaluable im utterly clueless, more focused on my boys rather than myself but yes I am learning so much, and actually feel more calmer speaking with you all.
My pleasure, least I can do. I'm really pleased that it resonates with you.
Would be great to hear if you did have success with it. If so, we could try to encourage others to use this report aswell to sway GPs to understand the scale of the issue at hand here (and it's an acknowledgement of that from their own people, as it were).
It's the least I can do to help, I can only imagine how much your hands are full and then to have to manage PA too. You deserve all the help you can get.
Mine did this. On the first telephone call, I pointed out what the previous doctor and I had discussed but was met with - guidelines say 12 weekly. I then argued that the guidelines now say 8-12 weekly so at the very least I wanted 8 weekly, which they agreed to. They also referred me to hematology for an opinion on whether I could benefit (even though I was already benefitting) from more frequent injections. the first one said she didn't advise it as there were studies that too much can cause cancer. I told her that was bull and looking up the research later I found the study she was on about and it says nothing of the sort. It stated that those with elevated B12 levels without supplementation (they eliminated anyone who was on b12 replacement at the start of the trial) went on to develop cancer within 2-3 years (I think) which could indicate that high levels without supplementation could be an early marker.
She referred me to a colleague for a second opinion and he said he found no reason why I couldn't have them and also wrote to my gp to say that, and that I had expressed a willingness to self inject if the problem was the cost of nurse time.
When I eventually spoke to the GP after they received this letter, they basically said they were going to ignore that, and that the guidelines stated 8-12 weekly so they weren't prepared to go above that (what was the point of wasting money to refer me if they weren't prepared to follow what the specialist said?!)!
TBH as soon as I found out they were taking me back to 8 weekly, I ordered my own and have been doing them myself for over 18 months now.
I didn't have to put up with the stress of being told no again and again as I knew I could do my own as frequently as I liked.
My issue now, is I am having to go through similar with my Rheumatologist as I have been told there is signs of synovitis in my hands and wrists (likely in the rest of my joints too but they only scanned those joints) although not been given an actual diagnosis. Once again it is a trial and error of different meds, and honestly I am just exhausted with it all. The thought of having to fight to get a diagnosis and adequate treatment again, having been through it once fills me with dread.
I hope your doctor listens to you, but at the very least make sure you get them at the very least every 8 weeks (tell them about any neurological symptoms that you may not have realised were symptoms) and buy your own to do in between.
I also had a similar situation. I was on 12 weekly jabs, got asked by my doctor how I was fairing and got put on to 6 weekly.
Then she left the practice and retired and a less caring GP got hold of her list.
He went through it and "weeded" out the patients who he thought were cluttering his waiting room on a regular basis. His term was "reducing foot fall".
I was a casualty of his policy and with no consultation and no arguement I got put back to 12 weeks. He told me to go to Holland & Barrett and buy B12 Boost, a sublingual spray. I can't absorb because I'm on long term ACE inhibitors so it didn't work. I felt crap.
I worked at it and argued. I didn't want to self inject as I have an aversion to needles. In the end a compromise occurred, again without consultation, and I got moved to 8 weeks. I still felt crap. I felt as though they wanted me to suffer for between 50-25% of the rest of my life.
I have had a few health problems in my life and a few scares, I promised myself there was no way I was going to let this useless uninformed doctor make me suffer anymore.
I carried on complaining until I was noticed by another senior practice partner who immediately put me back to 6 weeks. I feel relatively good now.
In all it took a very stressful two years and a half years to sort out. All I have to worry about now is calming down after e-consulting and the useless, unfit for purpose NHS we have in Wales.
It’s so sad to hear that another one of us has to fight to stay alive because that is what it boils down to. Exactly the same thing happened to me. I changed surgeries and a fabulous doctor listened and put me back on 3/4 weekly injections but now one of the nurses is trying to get me on three monthly. I’ve avoided her for now but know trouble is brewing.there are a lot of knowledgeable people on this forum who have helped me and others and they will do the same for you. I wish you all the very best. Take care
I just want to say how sorry I am that you're going through this. Reading the replies, I am appalled at what they do to you guys. They're doing it here to me in the US, but I'm lucky enough to just buy my own B12. But if I couldn't afford that, I would be in a very bad place. As, I'm only allowed 1 injection a month. My loading doses were one a week for three weeks, then once a month. I would only be on injection 7 right now, but instead, I SI and am on injection 70!!! If you could in any way see yourself clear to afford to buy your own B12, try to do that.
I know it can be very expensive, especially for a single parent with two disabled children. I have no words to help you, but I just wanted to give you my support and let you know that you're not alone, at least not here on the Forum. I know it feels like you're all alone when you're there in your world taking care of your children in complete lethargy and exhaustion. I'm sure confusion and everything else that goes along with this miserable disease. The Forum helps so much but when it comes to every minute of the day and you're all alone, it is very hard and I'm very sorry. This just makes me so sad and angry for you. I feel like we're pawns in a chess game.
I'm just so appalled when I read what you guys write on here about NHS. Out of the blue they make a phone call telling you they're changing your whole regimen. What triggered that phone call? Why, out of the blue, out of millions of people, does ones name pop up and suddenly you can't have your injections anymore? It just blows me away. It makes you wonder what's going on behind the scenes that out of the blue they would choose to change what they're doing for you or anyone. Who's analyzing this information.? They don't even really know who you are, yet they're looking at your records and changing your treatment. What triggered that? It blows me away. Grrrrrrrr all rhetorical questions. Just venting. But really this is crazy. B12 is cheap and easy. What is the problem!!!!?
😡
There should be a foundation that raises money for people who can't afford their own injections. They have animal rescues and all kinds of rescue foundations, there should be a Rescue Foundation for B12 deficient people, that they could turn to for help. Maybe fill out a financial aid form where if you qualify they would help you with that months B12. There just has to be some way to help ourselves. A non profit organization that raises awareness and money for our cause? I don't know, but i feel it is up to us to save ourselves not just with SI's but with fundraising, and educating others, so we can send a person the b12 they desperately need.
Well enough venting. I sure hope you find the help you need. Sending supportive hugs. Wish I could actually help you.
There is no reason for a successful treatment frequency to be altered. A GP should know better and a nurse should know to butt out.
A receptionist should realise they are not qualified - and comments not useful or welcome. Talk to your usual GP - the one who thought that one a month might be better for you as an individual patient.
Have a look at the right-hand column on this page at the top (Related Posts etc..) and find the heading "topics": click on "all things Pernicious Anaemia" and you will find "Latest Poll" - from there, you'll find a sub-heading "How often do you feel you actually need your B12 injection ?" and then click on results at the end of the post.
You will find that about 25% of the voters agree with you.
You are not greedy, or a hypochondriac, or addicted. This is a cheap and harmless but essential vitamin we are talking about.
My GP once, years ago, tried to suggest that I should accept some hair-loss at my age (I was then 57).
I asked in exasperation "Do I really have to bring my hairbrush in to show you what I'm talking about ?"
She later became my lifesaver, diagnosing functional B12 deficiency by ordering an MMA test to discover why the B12 injections were not stopping my deterioration. I was then started on two injections a week immediately. Three months later, I actually felt one ! This was my first signal that repair was actually happening.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Really sympathise with your problem. When I discovered that I was B12 deficient my doctor refused to believe it. Point blank refused any treatment as my blood B 12 was high due to crap supplements. I immediately decided to look after myself and started SI using b12d.org guidelines within 6 months I was sorted. In the end you are responsible for your own health and the clowns in the NHS can go and do one as far as I am concerned. I would sort yourself out and ditch the stress of dealing with amateurs . They should read “ vitamin B12 deficiency in clinical practice” by Dr Joseph Chandy. I have and I probably know more about B 12 issues than my doctor. Remember most doctors are people who have memorised books and symptoms it’s rare to get one of high intelligence and when you do stick to them.
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