I am wondering if there are any articles that I can bring to my doctor that indicate the need for frequent injections?
I am currently having once a week cyanocobalamin injections (I'm in Canada). I originally had 2 a week (1 cyanocobalamin and 1 b12/complex injection), but one was from a naturopath. I healed very quickly, although not fully, and after a month I just had one per week. Over the last year, I tried decreasing to 1 every 2 weeks, but I slowly started to get worse. The past 2 months I have been back on 1 injection per week, but I am not improving. For some reason I have nearly 24/7 air hunger, the sighs are coming back, my concentration/focus is declining, I have confused thinking, and my tiredness is turning back into exhaustion. I struggled with these symptoms despite my improvements, however they seem to becoming worse. I feel maybe from trying to decrease before my symptoms actually dissipated. I also feel like I'm one of those people who need frequent injections, but I don't know how to ask my doctor for this. I'm hoping to have something to bring him, so I can show some "evidence" on why I need this. Can anyone help me? I feel like I'm slowly suffocating
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I appreciate your reply. I was actually looking through some of their links but I have such confused thinking and brain fog that I was going in circles... which is why I made this post. I will definitely look again though!
And I didn't know I could get it otc here! I am scared to self inject though. But so far I always had a prescription. Or saw a naturopath, but it is very pricey! I was hoping to have a talk with my doctor as I would like to have my care with him. Unless it turns out I have no other choice I guess, but I am hoping I can go this route first!
Thanks! I know that it would give me a much better quality of life than I currently have. I'm glad to know there is an option still if this doesn't work out!
If symptoms start returning , it’s a sign that you need more regular injections that will keep symptoms at baby. It’s that simple . But yes, one has to convince the doctor that one isn’t making it up and that one isn’t a hypochondriac. I didn’t succeed , so was forced to self-inject , which is cheap , easy and convenient . The best thing I’ve ever done for my physical and mental health .
I know, for some reason I was hoping I was the one who didn't need that many injections, but I know I do. And yeah, I have been seen as mentally ill and went down that entire route for so many years unfortunately. And without improvement. With B12 injections, my 20 year depression lifted and it hasn't returned since I started them. And many physical issues improved, but there's so much more to heal. I know my doctor sees a difference in me, but I am not sure what they will be willing to do. And I am sorry you had a poor experience with the doctor. I am very happy to hear that SI has helped so much. If my experience is the same, I may have to join you. All I know is that I can't live a sick life anymore
I don't think you will be able to find the necessary evidence to convince your doctor. Unfortunately the need for frequent injections is not widely recognised by the medical profession and has not been researched.
You can tell him your symptoms, how they improved on a certain frequency of injections and then got worse on the lower frequency. That is strong evidence that a higher frequency of injections is needed for you, and there is no harm in trying, you cannot overdo B12.
For supportive evidence you can look at the Pernicious Anaemia Society webpage where it clearly states that the biggest complaint from members is that they don't get sufficient frequency of injections, there is a bit more info on the FAQs page for medical practitioners, which you can show him.
There is also a section on b12-institute.nl/en/ which is dedicated to diagnosis and treatment pitfalls and at point 13 it mentions that if symptoms return it means the frequency of treatment is not sufficient. It recommends twice weekly injections where obvious neurological symptoms are present. It also mentions it can take two years to be almost symptom free. This Dutch institute is the only place that is really specialising in B12 deficiency treatment and research, so hopefully you doctor will be open to their suggestions.
you could try pointing your GP at the area of the PAS website specifically aimed at helping medical professionals improve the diagnosis and treatment of PA (and other B12 absorption problems)pernicious-anaemia-society....
If you search forum posts with term "Canada" you should be able to see threads started by other forum members from Canada. May also be worth putting Canada in the title of any threads you start so it hopefully attracts attention of forum members from Canada.
I also wondered if you had had folate and iron tests recently.
I hope you get the treatment and support you need.
Thank you for all of the information. I do like the mayo clinic article, I feel like it has some good information. I will look through the other links too.
I have not had had my folate and iron tested recently, but have had them done this year. Folate was above the top of the reference range, and iron panel was normal. My ferritin was around 47 I believe. I am currently taking a prental that has both iron and folate in it as well.
And thank you, I hope this all works out. I am just ready to feel healthy regardless though
I am in Canada. My doctor gave me a prescription for every week and encouraged me to self inject from the beginning. I have had good results after 9 months but was still crashing after exercise. Did a twice weekly loading for 3 weeks and have seen better results now back to weekly. Cyno is available OTC for about $8-$10 for 10 ml bottle.
I am in Canada. Started injecting weekly about 4 years ago then when twice a week. Symptoms continued to worsen, neuropathy etc so went to SI daily a few months ago. Big improvement! Neuropathy is gone, energy much better no crashing. Sometimes I would buy the B12 OTC myself when experimenting beyond my bi-weekly script. Fortunately I have an understanding doctor who gave me a daily script (saves some$ vs OTC) Needles are available on line. No doctor is going to inject you more than monthly so you need to learn to SI - have them show you the first time.
(I see that you are familiar with the article I mention below. I hope my response is useful nonetheless.)
The first important thing to know is that there is no good-quality research on treatment of B12 deficiency with neurological symptoms. So you won't find any research supporting your view, and importantly, your doctor doesn't have any research backing up what he wants to do. Therefore, what is known about treatment comes from the anecdotal observations of clinicians.
One of the links provided by sleepybunny is from the Mayo Clinic, in the US. More precisely, it is from a peer-reviewed medical journal published by the Mayo Clinic, "Mayo Clinic Proceedings". The name of the linked article is:
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Toward the bottom of the article is a section with this heading:
How Should Treatment Be Given?
In the first paragraph is the following:
" In case of neurologic symptoms or abnormalities, it is suggested to administer hydroxocobalamin, 1000 μg once or twice weekly for a period of up to 2 years..." As you might note, the "reference" for this statement follows in the same sentence: "... the package insert for hydroxocobalamin has included these particular instructions for several decades." (Note that the authors include two physicians, a hematologist and an endocrinologist, and in the article the authors talk about working with patients in a clinic.
Further along in this section is the following:
"Clinical practice has shown that in a substantial number of patients seen in a tertiary care setting, injection frequency cannot be reduced after the initial loading regimen." The "loading regimen" is the intensive series of B12 injections in the first week or weeks of treatment, often daily for a week.
It's important to know that B12 is not toxic at any level. Your doctor seems better informed than most but many doctors are hesitant to prescribe more frequent injections due to the unwarranted fear of "B12 toxicity", which does not exist. The authors of this article address this matter in Table 1:
" •You must stop after 5 injections because vitamin B12 can have serious adverse effects."
The first author of this article is also the first author of a very brief, but very thorough, article on B12:
Mentioned is that the healthiest happiest patients are those who self inject (presumably with the frequency that best fits their symptoms). Again, B12 is not toxic at any level.
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low levels despite frequent injections? 
Cyanocobalamin & Methylcobalamin Injections
Interesting development in the 'more frequent injections' battle
inconsistent response to injections
