Hi all
I need to SI twice a week just to stay on top of my symptoms. If I miss a dose I experience severe brain fog and jelly legs, followed by palpitations and breathlessness - and of course exhaustion. Basically unable to function.
However this is so far removed from NHS guidelines and even what my haematologist said, I’m starting to doubt myself and if there’s something else going on?
Is this normal?
I’m in my early 40s and otherwise healthy.
Thank you x
Some people on other sites are injecting daily or sometimes twice a day - so twice a week should be okay. When i had loading injections i was having injections every other day for two weeks - better see what other people say as everyone is different. Good luck with your journey.
The thing is we are all different I’ve been on daily for many years and each time I try to leave a gap of the day I feel symptoms return even symptoms I haven’t really had for three or four years balance issues brain fog forgetfulness and general fatigue.
I’ve tried sublingual spray’s by doubling and tripling the amount but nothing will replace the daily injection for me I still top up even with a daily injection if I feel tired importantly I make sure I get enough folate and the rest of the vitamins I need a lot of magnesium 400 to 800 mg .
I was low in vitamin D but I combat that and now I am in optimal range which I find for anyone with an autoimmune disease needs to be.
So 10,000 IU with my breakfast and the mag at bedtime.
The B complex at breakfast or mid day.and plenty High potassium foods .
I also have to top up my zinc levels a few times a week.
I wish I could delete injections only 2 a week ! Maybe one day .
I have to hope
You know what is working for you. If you have tried a bigger gap and you get ill you need that frequency.
It's unclear why some people need such high levels circulating . I do think once you are on injections you need higher levels in your blood .
I question my regime too . I've been told on numerous times I shouldn't need as many. I'm far far from well . I'm keeping going as it's the thing that's helped me to date. I've just tried a longer gap. So far seems okay . Everyone is different. If I hopefully get to the stage at functioning to a level I can cope with I will definitely stick to that regime. It's because we have so little guidance we start to doubt ourselves. Keep on top of keeping your vit D folate and iron in good range. I'M finding that helps
A lot of us started self injecting because we couldn’t get frequent enough shots. When you get enough B12, you feel more normal, albeit not totally normal, but you start getting on with life and doing more as you are able. This also helps your healing go faster and you naturally use up more B12. But in the presence of an absorption issue, the B12 doesn’t get recycled in the gut and it goes down the drain.
Thr most my GP would provide me was weekly cyano injections and so I split then dose in half and take 0.5 ml on Monday morning and the rest of Thursday. This is pretty stable and I can get through the week.
However, I still work and commute and have additional stress so I supplement daily with additional methyl sublinguals 4x 5000 mcg that I spread throughout the day.
Also how much folic acid are you taking?
Everyone is different and your body will tell you what you need. Not worth suffering when a simple injections will keep things in check and possibly help you to heal. If I go any longer than every other day, symptoms start to return.
I’ve had occasions were the prescription gets screwed up and not renewed. This happened two months ago so provided me the opportunity (forced me) to see how long I could go without injections.
It was about 10 days but I also was taking extra methyl sublinguals and I increased those each time I felt a symptom start again.
I’ve also missed my folic acid and multivitamin on occasion. Forgetting to carry along my pills in the morning happens occasionally. I now keep and extra dose in my desk at work.
I also do not double up my next dose when I forget to take one. I just take the next dose at the correct time. I take 1600 mcg folic acid 3x a day for a total of 4800 mcg.
If I miss a dose, a symptom will show up the next day so I figure folic acid doesn’t get immediately used from the stomach but instead has the delay of the gut as well.
The trick is the stick to a regime and schedule of B12 and supplements and use your logbook of symptoms to monitor your reactions and figure out your delays due to your gut.
Thank you so much everyone for your info and taking time to reply.
I feel more assured that’s it not just me (which the haemo would have me believe!)
Stay well x
I also get a lot of palpitations, breathlessness and muscle twitching and I keep increasing my SI so I am now at every second day. I've tried cutting back but can't manage it. I'm now trying to work out which supplements to take. I started taking magnesium glycinate and that is helping with the cramping but now that is under control my 'restless legs' have returned - always something !!! I wonder if anyone has a solution for that 
I too inject twice a week. My doctor supports this regimen on the grounds that it would be near impossible to overdose on B-12. What is not absorbed is passed in the urine. I am not a doctor, but if you feel you need injections twice a week, then you should not second-guess yourself. Dealing with what you feel you need and what the doctors may be prescribing, such as the injection frequency, is the hardest part of being a PA sufferer. Hang in there.
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