Pernicious Anaemia Society

B12 for 1 year but symptoms haven't entirely gone

Hey I've been on B12 shots for a year, but as the title indicates, I'm still having issues with fatigue. I'm 24, male, and have no other known illnesses.

I did 2 sets of loading doses 6 months apart (1x 1mg/ml injection hydroxocobalamin every 2 days for 2 weeks), and do 1 injection otherwise per month. I'm in the UK, but the whole 'one every 3 months thing' wasn't enough, and I had other neurological symptoms recur when on that 3 month cycle.

After each injection, I take 5 days worth of 5mg folic acid. I try not to go too heavy on the folate to avoid causing other issues.

I've also taken 200mg iron tablets intermittently, but those haven't shown up as low.

I'm confident the injections have supplied B12 properly, as on the 2nd loading dose doctors were concerned as my B12 had exceeded 2000(nmol, I think).

While a lot of issues improved, such as cognition, gained weight, fatigue isn't as bad - it still feels like the fatigue is still noticeable, and not a common factor for someone my age. I'm not sure where I can go from here; I've already had an upper endoscopy, and no abnormalities were found. I've also tried a range of other vitamins, including vitamin D.

Does anyone have any suggestions?

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Imsorry to hear your having sad times, m no expert, but if b12 deficiency or PA is left untreated ir poorly/misyreated treatedfor too long some permemt damage can be done.... also symptoms can get when i was 24 i had jabs every 2 months and had all the general symptoms always return within about 2 weeks... i trusted my docs and stuck to every 2 months being told its imagened ... long story short at 27 (or maybe 28 ive forgotten my age this morning... im either 28 or 29 now) i was in wheelchair struggling for breath... im all good now (well i can walk and breath) but even on very regular injections i find some symptoms never fully go or only go for a short time (literally maybe a day or so, hoping that changes with more vits ) before going downhill. Keep up the extra vitmans, im told its needed... what was my point? Ah yes... ive been b12 def for roughly 28 years and symptoms havent entirley gone... i think everyone varys in this dept... again theres more knollegable souls on here but i know what its like to worry about these kind of thi gs so thought id do a post (if a rather uneducated one) whenever my symptoms get to me i try to focus on whats improved rather than what hasent, to best of my knollege it cam be a long road the fog is scary as feels like loosing ones mind a little, the fatigue and pain is horrid but its so much better than even 2 months ago , and not needing a walking stick is pretty awesome :) ... good luck and i hope your feeling better soon :)

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So just take the folic acid more often?

I can always do another round of loading doses. I'm concerned that while it's water soluble, extreme amounts of B12 might not be good for your kidneys and such. If there's nothing to suggest it causes problems, I can always do 1 every 2 days for a few week and see where it goes.

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have you kept a diary of your symptoms, eg does the fatigue improve with the injections but then returns very quickly - if so then you probably need more frequent injections.

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Yeah, it's been a mixed of short and long term symptom return.

It's like each month I lose 10%, but then the injection gives me back 7%, so it definitely feels like there's been a net loss since my last rounds of loading doses.

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Hi there. I have to give myself b12 injections 2000mcg of hydroxocobalamin 2x per week. So far I haven't been able to go less yet. My symptoms come back by 4-5 days. My doc says it doesn't matter how high my b12 is as long as its not too low. I always test over 2000. It sounds like you may need a lot more b12 than what you're getting.

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Wow, how long have you been taking that much?

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I started in April in 2017. I was severly ill and bedridden for 3 months. That's when I found out I had pernicious anemia amongst other medical issues that were going on. I have to say that it took a long time to start to turn my health around, but it is getting better. But I do have to stay on the injections or I start to back track. I also take sublinguals and some iron 2-3 days per week and methylfolate 2-3 days a week and a multi-vitamin.

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