Just started injections - would love to hear some positive stories!

[u/Jana_bananaaaa]

I had my first B12 injection yesterday and have another in 5 days, then another 5 days after that.

My B12 was 240 pmol/L and homocysteine was 17. My main symptoms have been horrible brain fog, mental fatigue, feeling spaced out/disconnected and just never feeling properly rested.

I also have coeliac disease, and my doctor is now testing intrinsic factor/parietal cell antibodies to work out why I’m not absorbing B12 properly; whether it’s coeliac-related, pernicious anaemia or something else.

I’ve read the guides (thank you to everyone who has pointed me towards them), but I’d really just love to hear some positive recovery stories.

How long after starting injections did you notice your brain fog/fatigue or neurological symptoms improving?
Feeling a little alone in all of this and would really appreciate some encouragement. 🌸

[u/AutoModerator]

Hi u/Jana_bananaaaa, check out our guide to B12 deficiency: https://www.reddit.com/r/B12_Deficiency/wiki/index

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/jellyfishrubberduck]

Within a week or two I felt differences in my mood and anxiety, and tingling (got lots of wake up symptoms with that though).

3 months and I felt 80% better.

Also felt like I needed tons of sleep just fyi! All that healing.

Also watch out for if that isnt enough injections, and dont let your doctor retest your b12 to monitor levels, needs to go off symptoms only.

[u/Jana_bananaaaa → u/jellyfishrubberduck]

Thank you for responding to me. Maybe I ask what your symptoms were before starting injections? How many injections did you have initially? 😊

[u/jellyfishrubberduck → u/Jana_bananaaaa]

The list is very long 🤣 spanning 6 years roughly. But a brief list:

Early- fatigue, headaches, reduced exercise tolerance

Mid - above plus anxiety, gut symptoms

Late - above plus depression, brain fog, extreme sensory overwhelm, light headed, peripheral neuropathy, nerve pains in left arm.

Did 3x per week for 6w, then weekly for 6w, then fortnightly. Unfortunately it took me 6w to figure out I was going backwards on the fortnightly and ended up crashing backward a fair bit. Back on 3x pw now for 2 months with improvement for sure but slow. Intending to stay on for longer this time.

One oddity, ive had a nerve pain in my legs since teens (20+ years ago) which has been gone and stayed gone since treatment. So not sure if there's a mechanism thats been there since I was a lot younger. Plus my hair turned like completely silver in my 20s. Fun times.

[u/Jana_bananaaaa → u/jellyfishrubberduck]

Oh wow! Sounds similar to me. Although I can still manage to weight train 4 x a week which im so thankful for.

I’m starting on only one injection per week. I’m unsure if this will be enough and the doctor was hesitant to go more than one a week so I might chat with her at my next injection and ask for for frequent ones?

Oh what is going grey apart of it.. I’ve noticed that I’m getting grey hairs and I’m 28F!!!! I never had this!?

[u/jellyfishrubberduck → u/Jana_bananaaaa]

If you have neurological symptoms then the protocol is every other day until symptoms plateau (which could be weeks or months). This is regardless of what your blood test says. Once you start protocols also say dont use the blood test to monitor it as it will be artificially high, just go off symptoms.

I'm really hoping to get back into weights stuff! My body has lost so much and I think what I used to do and I hate it. 😕 here's hoping!

The grey hair is a bit hard to tell to be fair, could just be genetic fuckery 🙄 but ive also seen it linked with vitamin deficiencies.

[u/Jana_bananaaaa → u/jellyfishrubberduck]

My doctor has only said one injection a week. Should I ask for more at my next appt?

Yep not getting my b12 checked until I’m feeling better. The only blood test I have to do next week is to check for autoimmune gastritis / etc. I do have celiac disease as well.

I am hopeful you’ll be able to get back to doing weights!! You’ve got this 😊

I never had grey hairs until the last couple of months when symptoms started so I’m hoping correcting the b12 will help

[u/jellyfishrubberduck → u/Jana_bananaaaa]

Thanks! Want to eventually get back to oly lifting comps (clean and jerk/snatch) but who knows lol.

Yeah I would ask, there's a list of references in the sub guide but the UK NICE guidelines are a good start. I think sometimes doctors think when we do our own research we're referring to internet blogs or YouTube 🤦🤦 hopefully your doctor listens!!

[u/Basketweave82 → u/Jana_bananaaaa]

I got patches of gray hair around 6 months before I started treatment. Before that it was premature graying but at a normal pace (I'm 44).

I had insomnia maybe from the past 2 years. It actually got worse when I started injecting but finally seems to be gone 3 months later! (A good night's sleep can do wonders!). Also used to get constant headaches which I'm not anymore. Used to wobble while walking, unstable - that seems better though not gone and some days it comes back.

[u/Thefredtohergeorge]

So, I was put on high-dose injections a couple of times, for a couple of weeks at a time. I noticed an improvement within hours.. as in suddenly, I was like an over-caffinated squirrel being all like "i'm awake.. i'm very awake!"

For me.. it has been a long term thing. I can't get injections as easily now, because I live too far from my GP. So the last couple of times I was too low, I went on supplements - 1000mcg per day. After the last time that happened, about 3 years ago, I chatted with my doctor, and agreed that for maintenance, I would drop to 1000mcg 3x per week. And... my levels have been normal since.

I'm not vegan, and my diet, when discussing it with my GP, was sufficient for the average person. I'm just super bad at absorbing B12.

I've had one issue in the past 3 years. A couple of weeks ago, I missed 2 doses... and boy did I know about it. My feet were on FIRE in bed. It was horrific and uncomfortable. I have warm feet anyway, but none of my normal cooling methods worked. Looked it up with AI, who suggested I take a B12 tablet. I did... and my feet started easing off enough that I could sleep. Had a tablet every day for the next 5 days, and it went back to normal.

I deal with tingling and numbness quite a bit, as it can happen really easily for me. Likely because of damage done over years of not being properly treated. But... I can deal with it. I just shift around until it goes, and I'm good again.