I was wondering if anyone previously had to self inject every other day for a period of time before they went onto day one every week and then maybe one per month.
I am now back at work and had to increase mine to every other day as my fatigue came back and right side of body neuro symptoms got worse, especially after a long day.
I'm 18 months in from being diagnosed but only about 6 months self injecting. I'm patient but sometimes it can still feel quite odd self injecting when doctors think we only need one every 3 months.
Thank you
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Sunshine1932
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The longer you were B12 deficient , the longer it will take to get back to normal . Trouble is ,you probably don’t know how long you’ve been deficient.
Don’t bother about what the doctors who only want to give an injection every 3 months . They have very poor knowledge of P.A./ B12 deficiency. ( my doctor told me that too much B12 was toxic . When asked how much , I got no reply . Probably confused about another B vitamin ,which can be damaging if overdosed , BUT NOT B12 ! So no worries on that score ). You inject as often as you need . You will get there in the end . Hope you are taking a daily folic acid tablet (400 mcg) or eating plenty of folate-rich vegetables . It works together with B12 . Best wishes .
I'm Brrrwabbit & have been dealing with this stuff too! I've learned from my own experiences with the B12 Deficiency & other health issues I deal with daily how much B12 my body needs! I've done experiments on myself with the B12 taking it a couple times a month, then once a month, comparing how I felt. Then I went to a couple times a week compared to twice a month or once a month & I found out that when I take the B12 every other day, 3 times a week, I felt better, got my energy level up & when I did that consistantly, my energy stays up consistently & I feel half way decent & as long as I consistently take a B12 shot every other day, 3 times a week, my energy level stays up & I feel better ! When I don't, I get very tired & don't feel good! My energy has gone down to the point where I can barely stand up! Once a week isn't enough B12 to keep my energy up & once a month wouldn't help at all for me so everyone is different! Whether you take one shot a month or a week or 3 shots a week, or a shot every other day; it's according to what your body is telling you it needs!
doctors DON'T know what they are talking about or how much B12 a person with Pernicious Anemia needs to take per week, month or every 3 months to keep their energy up & feel like a "human being", especially after a long day & should be listening to the patient & what they're telling them instead of trying to tell the patient how much B12 they need & how many times a week or a month when they simply don't have a CLUE about what they are talking about! The doctors don't realize that if or when you're dealing with other health issues besides the Pernicious Anemia, like Diabetes, Systemic Lupus or Fibromyalgia, or all of the above like I am, these other issues will make a difference on how often you may need to take the B12 too! Stress is another issue that I've learned greatly affects it! I deal with Systemic Lupus Erythematosis, Fibromyalgia, Rheumatoid Arthritis & Diabetes besides the Pernicious Anemia & have to take a shot every other day; 3 shots per week! As long as I do, I can keep my energy up & feel like a relatively "normal person"! If I don't, I get extremely tired & taking the shots regularly keeps the B12 level where my body needs it to be! Not doing it & taking a shot once a week or month, the B12 level drops & it shows in how fatigued I am! People don't realize how IMPORTANT B12 really is cuz it helps our bodies make more cells & more Red Blood Cells! When someone has Pernicious Anemia like we have, we lack a specific enzyme that binds with & protects the B12 when we eat it in foods! When these foods with the B12 hit the stomach, IF we have this enzyme, the enzyme protects the B12 from the stomach acid & the B12 when it's in the Intestines, is then absorbed by the body. When we DON'T have this enzyme, the stomach acid destroys the B12 & the body CAN'T absorb it so we have to take shots so the body can absorb it! When the body lacks B12, the Red blood cells enlarge & make it more difficult to move through the veins & arteries & some of the cells stick together! When this happens, oxygen & nutrients aren't getting to the other cells properly causing tiredness, fatigue, mood swings, etc. The B12 shrinks the cells back to normal size so the cells flow the way they're supposed to & get the nutrients & oxygen to where they're supposed to & when, so we can have the energy we need during the day, etc. Sometimes we need more of this vitamin, sometimes less; but our bodies tell us how much we need by the symptoms we feel like how tired we feel! The doctors have NO CLUE how much & especially how often someone with Pernicious Anemia needs to take the B12 or what it feels like to be so tired you hardly have the strength to stand up & get your strength back enough after taking 3 shots a week for a couple weeks that you can, at least have the strength to stand up again! The doctors also don't understand that you CAN'T "OVERDOSE" on B12 cuz it's NOT A DRUG!! IT'S A VITAMIN!! A VITAMIN THAT YOUR BODY USES WHAT IT NEEDS & WHATEVER IT DOESN'T NEED, FLUSHES OUT OF THE SYSTEM!! WHAT IT DOES USE, DOESN'T LAST VERY LONG!! ONLY A COUPLE OF DAYS!! THAT'S WHY PEOPLE LIKE US NEED TO TAKE A SHOT EVERY OTHER DAY!!
When you try to explain this to the doctors they just ignore you & still think they get to tell you how much B12 you need to feel half way decent!! The doctors don't get it! The best thing I think you can do is listen to your body! It'll tell you how much B12 you need & take as much as you need accordingly! That's what I do to help myself feel better & keep energy up!
I've been self injecting every other day for 14 months now, i feel the best I've felt in years but, when I feel the energy to do stuff that I used to take for granted, I over do it & then suffer.
I'm my own worst enemy!
It's all about learning to pace yourself & accepting that if you over do it, you will suffer from fatigue etc.
I managed to wallpaper one wall Saturday, something I would've done daily a few years ago, I felt like I'd just finished a full marathon after!
I know It's difficult to pace yourself if you work, but I am learning to now as I have no choice.
I tried spreading out my injections but soon learned not to.
Great post for those of us just learning we have this affliction,it’s the not knowing where to go next or what to do next that’s the hard bit but thanks to the people on here freely giving their advice it’s making things so much clearer in my head so huge thank you all.
I agree with Ritchie1268 - difficult to find a balance.
I tend to avoid longer projects completely or rush through tasks, assuming that if I hurry, I'll get it done before the B12 runs out - which is clearly ridiculous and leads to a total bodge-job. So well done, Ritchie !
I tried for a long time to work with NHS frequency and found that after the initial loading dose of 6 injections was completed (which made no earthly difference to me), the 3-month wait made me deteriorate very quickly, so then I was given reloading injections at 2 a week for recovery -and it took 6 months before I deteriorated again. Then one a month for a short while : still deteriorating slowly. Finally, when haematologist decided to tell my GP not to give me more than 1 injection every 2 months, I gave up. By this time, I had been off sick from work for 15 months - and was totally unemployable, by my own admission.
Since I already knew that 1 injection every 2 months would be nowhere near enough and that I would get very ill again and probably lose my job, I decided to self inject at a frequency that would enable me to get back to work a month later. I self injected every other day.
I returned to work on a phased return, started at one day a week and am now on two days a week. It isn't exactly the same job but then I'm not exactly the same person.
I have been self-injecting at this frequency for over 2 years and have only recently felt well enough to experiment with that. I have found that I'm okay at about 2 injections a week, but get worse fairly quickly if I try 1 a week. Seems I can keep symptoms in abeyance, but can't rid myself of them entirely. But that's just me and that's just now.
This will be different for everyone. Some people manage well on NHS frequencies and others need more. Current Pernicious Anaemia Society research is finding this to be true and to have a cause. We'll have to wait a while for the published results, but I have already met a Metabolics consultant who is aware of this - which is heartening news.
You are doing really well in improving and getting back to work. This will take time.
I wish I could drop my injection frequency down from every day, after the loading shots, I went to the 1 a week and quickly found that I deteriorated rather rapidly, as I was self injecting, I was lucky in that I could change my dose to two a week without having the hassle of doctors to negotiate with! Even two a week, I was still so poorly that I decided to start every other day, but after speaking to the PAS, and others on here, I put it up to every day and this is what I’ve been on for the last 3 months, it’s slowly working and I’m beginning to feel more awake, I certainly know if I’m late taking one or I miss one because I’m not well and sleep through a day!
I do have other issues as well though, I suffer from Addison’s Disease, Hashimotos, Hemiplegic Migraines and I’m disabled, I have issues with my spine, pelvis and knees. I’m a complex case according to my endo, but hey none of us want to be boring do we 🤣
Well done on returning to work. It’s my dream to go back to work but it’s something I’m not holding onto- I’ve been medically retired now for 7 years.
Keep going, LuluCops - it took me ages to get to the stage where I was almost certain I could reduce the injections a bit. Perhaps I would have got there in half the time if I'd injected every day instead of alternate days (?) It's working so far (except when I got a bit overoptimistic and waited a week )- so I hope you can take heart from this.
There were times when I was starting to think "Maybe this is something else" - but I didn't stop, because nothing else was found, and I couldn't choose to go back to how I'd been.
It's working, and I'm working too- part-time now, but that's okay.
Thank you hunni, I’m the same, there’s no way I could choose to go back to how I was, that would be as though I was giving up, and I’m not- I won’t!! I’m determined to get back some quality of life again, my youngest is 10 and I’ve been so ill since she was born, she’s never known me well, I don’t want my illnesses to take away the rest of her childhood too!! 🥺
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