Hi everyone,
Has anyone ever not been allowed to self inject?
I'm an adult living in Australia with PA. I've been through the whole GP nightmare thing and I receive monthly injections but I feel I need weekly. Mum won't let me S.I.
I feel like S.I was my plan B and without it I feel completely stuck.
Any suggestions would be much appreciated,
Thank you
A difficult one.
How old are you?
perhaps PAS can help .
or discuss othef options with your mum. Look at subcutaneous injections perhaps.
As you are an adult , you can self inject .
Hi,
Might be worth you putting Australia in the title of your post as that may attract attention from other Australian members.
May also be worth searching forum posts for others threads started by Australians as these may have helpful information.
Has your mum explained why she does not want you to SI?
Have you looked to see if there are any national or regional guidelines on treatment of B12 deficiency that you could pass to your GP?
A few links to B12 information.
PAS (Pernicious Anaemia Society)
pernicious-anaemia-society....
Based in Wales, UK but has some overseas members.
B12 Deficiency Info
B12 Awareness (US website)
Stitchting B12 Tekort
Dutch B12 website with English articles
stichtingb12tekort.nl/our-e...
B12 Institute - Netherlands
Has useful lists of symptoms and causes
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper founded PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Thank you for the suggestions. Mum just thinks the doctor has to do my injections and nothing I say seems to mean anything to either my GP or my mum and I'm caught up in some sort of nightmare between the two of them.
Pretty sure B12 is available as an over the counter medication in Australia - ie doesn't require a prescription.
yes you can purchase it over the counter in chemists.
if you need extra have you tried oral supplements, the ones that go under the tongue are quite effective.
Have you thought about seeing another doctor or specialist?
Much better to get proper medical support, that you and your mum can follow.
I have tried sublingual tablets. Nothing really happens when I take them. I saw an endocrinologist recently but when I went back to my GP she refused to allow me access to whatever the endocrinologist had sent through. She said I would have to go back to the referring doctor. I wish I could get the medical support I need. I just don't know who to turn to.
you are entitled to a copy of the report, I often get the receptionist to print out results and reports after I’ve seen my GP, if I forget to ask him.
Can you ask the referring doctor for a copy? Even call the receptionist and ask for it, explaining your predicament.
So my GP refused to give me a copy. I then asked the receptionist who printed a copy but then refused because my GP refused. The logical thing would be to see the referring doctor but it's not my preference and do you know if technically I have to go back to the referring doctor?
you are legally entitled to a copy, why did Gp refuse, he must have given a reason?
Might be easier just to go and get a copy from referring doctor. Is it a specialist or different Gp ?
I'm sorry your mum has an aversion to you injecting B12. But as an adult you can inject as you need. Perhaps she could read some of these posts here. B12D is misunderstood by doctors. They are under strict, senseless, guidelines, but the truth is, you cannot OD on B12. It is the one vitamin we need to live that is safe to inject daily. Some inject twice daily, once a week, biweekly, Every other day, once a month etc. If you don't get the right amount, symptoms will not improve and you can decline or you're symptoms will keep coming back. Most of the people in this forum, have a lifetime of experience, more than any doctors. They know what they are talking about. It is perfectly safe to inject everyday. She may be worried it could be addicting, but it is not a drug. It is an essential element to sustain a healthy life. Without the proper treatment, it can lead to irreversible symptoms like dementia, Alzheimer's, and many other serious conditions. Without B12, you are not rebuilding your RBC's and are depriving your entire system of the oxygen it needs to function correctly.
By the way, B12D or Pernicious Anemia can be hereditary. Does anyone else in your family have symptoms?
I don't know your age, but I assume you're fairly young, that makes me wonder what caused it. It seems worth it to see if others in the family have or had symptoms. Here is a site with extensive symptoms for adults and childre
b12-institute.nl/en/symptom...
Good luck.
And mom, it's ok. It is safe to inject everyday, even twice. I know it must be scary to see your child inject something into their body, but it is necessary. They will be better for it. One should inject per symptoms. If they need it, take it.
Thank you for replying. I totally understand. I wish there was something I could do that would just make sense and then get better. Mum just thinks my GP must do the injections and therefore I definitely don't need anymore. One of my symptoms is this feeling of not being able to wake up. Physically I get up but that feeling of waking up is just missing so doing anything becomes difficult. This combined with GP only allowing monthly jabs plus mum not letting me S.I. I feel very stuck. Does this sound like typical PA problems? It's like the more I ask for help, the crazier I am made out to be.
You are definitely not crazy!! You can't make this stuff up. 🙂 This condition is very strange and even though we all have the same symptoms or similar, they react differently with each of us. Doctors have a habit of not admitting when they don't know what is wrong so they say it is in your head or you are depressed, or they assign all sorts of ailments to your symptoms. But if a b12 injection helps your symptoms, then I am led to believe that is your problem. I'm sorry now I cant remember if you have confirmed PA or B12 Deficiency? I'm Brain tired.
Can you tell how long it takes you to feel better after your injection and how long it lasts before you feel bad? A diary is great for that. or a calendar to document a pattern each month of when it wears off. So you can show you doctor and your mom the pattern.
But the big hang up and misconception, is that too much B12 is a bad thing. Doctors, including my brand new hematologist, just told me that I am taking too much B12 and my levels are way too high at >2000. He insists that I don't need to inject daily. He is worried I am taking too much B12. This told me instantly that he does not know what he is talking about, because I inject B12 daily so my levels will never be lower than that. The fact that he didn't expect those numbers is insane! It's not necessary to even run b12 levels once someone starts injections. Anyone injecting will always have high levels. However, we are not using all that, due to absorption issues. So that is where the doctors are scaring your mom. She is probably torn between your suffering and having to believe her doctors.
Why don't you have your mom come on and ask some questions and allow people here to set her mind at ease. We can't tell anyone to self inject, but we can reassure her that daily B12 is safe. If you can't get her to understand, then... you are an adult and you have to think about your own health and how badly you feel and the consequences of not enough treatment. Your body is not lying to you. You are not crazy. You are not imagining your symptoms.
Please feel free to tell us your symptoms. No symptom is too small or stupid sounding. I get sick playing video games at 60 years old, LOL. We are here to help and support each other. We are not doctors but we all live with this condition and know more than any doctors about B12D. But we are all battling the "injection frequency misconception" and the medical gaslighting surrounding it.
The fact is, daily injections are safe. I do it every day, sometimes more, sometimes less. I go by what my body is telling me. Not some doctor telling me how I feel and what my body needs. Your body is screaming at you!
This is a good read about Injection frequency: perniciousanemia.org/treatm...
This took me 90 minutes to write due to my PA brain. 🤪🤯 Crazy
"Why don't you have your mom come on and ask some questions"
I think that's a really good suggestion Ellanore.
Greenscarf, maybe you could give your mum a copy of one of the books I mentioned.
Both the PAS website and B12 Deficiency Info website have links to films/videos about PA and B12 deficiency.
Maybe you could watch some of them together.
Please be aware that some of the stories in the films and books may be upsetting.
Good idea Sleepybunny. Doing things together is great idea. Things can be upsetting but I would rather know the truth then have it sugar coated. the truth is necessary. the doctors scared his mom with untruths. The movies would be a great thing to watch together. Everyone on here has more experience than any doctor. they live with this condition every day for decades, they know how to treat it. doctors do not.
I've been SIing for 6 months now. others for decades. I would still be bed ridden if I listened to my doctors. I listened to everyone here. I trust them 100%. They know!
Did you find a solution greenscarf?
have you checked you folic acid and iron levels too? B12 needs these to work efficiently so worth looking at that as well to make sure the b12 you are getting is working at its best. Keep a diary of symptoms, day by day alongside when you get your injection and see if there is a pattern, I know that’s tough but that’s what I showed my gp to get more frequent injections.
You could perhaps show this video of a research presentation and questions to her:
pernicious-anaemia-society....
As you are an adult, you shouldn't need to get your mother's approval for what you do. You can make your own decisions. Sure, it's nice if she approves, but if she doesn't, it's okay, you can still go ahead as it's your life.
Thank you for the link.
You and your mum may find it interesting to search online for "vitamin b12 deficiency treatment guidelines australia".
Self injecting and tests
Question after first im self injection
Self Injecting of B12
needle guage and self injecting
Reaction to hydroxocobalamin self injection
