B12 for 1 year but symptoms haven't e... - Pernicious Anaemi...

Pernicious Anaemia Society

32,623 members23,985 posts

B12 for 1 year but symptoms haven't entirely gone

ecp-swuk profile image
7 Replies

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?

Written by
ecp-swuk profile image
ecp-swuk
To view profiles and participate in discussions please or .
Read more about...
7 Replies
Fudgemanjim profile image
Fudgemanjim

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 :)

ecp-swuk profile image
ecp-swuk

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.

Gambit62 profile image
Gambit62Administrator

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.

ecp-swuk profile image
ecp-swuk in reply toGambit62

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.

jpar profile image
jpar

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.

ecp-swuk profile image
ecp-swuk in reply tojpar

Wow, how long have you been taking that much?

jpar profile image
jpar

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.

Not what you're looking for?

You may also like...

Confused about symptoms B12 deficiency or menopause?

Hi All I went to the GP with symptoms such as crippling fatigue, low mood, loss of memory and...
Bella2000 profile image

b12 worked but then not as well and im not sure why. any ideas?

Hey there! Last year I had an infection in my gums after getting a tooth extracted and had all...
b12curious profile image

Confused and frustrated

Hi, I'm new to the forum and desperate for advice so please bear with me if you can! I have been...

B12 symptoms after loading doses

New to this forum and looking for your advice. I had neuropathy symptoms and a B12 level just...
bzvvvd profile image

How Bad Have Your Symptoms Been With B12 Deficiency?

Hi all. Not looking for a scientific discussion, just out of interest really - how bad have you...
DaveT81 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.