How I Manage B12 Sickness (at least some of it)

Hello All - I have been reading this blog for a few months now and have gleaned a great deal of good information - thank you! I have especially been reading the posts from those of you who feel so sick after B12 injections - because I do as well. After my diagnosis of autoimmune atrophic gastritis (my antibodies are eating the lining of my stomach) eight months ago, I started B12 injections. I only managed two injections (one per month @ 1000 mcg) because I felt so incredibly ill - dizziness, heaviness on my chest, extreme fatigue, and general malaise for two days after. I asked my hematologist if I could go on B12 sublingual tabs instead (they melt under your tongue and and are absorbed through your mouth instead of stomach) to see if I would feel better. She actually said yes right away and told me that most of her patients take them rather than the shots. Well, unfortunately I still kept getting sick - same symptoms as the injections. But I didn't give up because I need them to survive. So a couple of weeks ago I thought, why not take them at night after supper (I have to take them with food) and sleep off the side effects rather than be miserable during the day? It really worked to a noticeable degree. All of the really bad effects I sleep off through the night and the next day I feel 70% better than when I took them in the morning. I'm still a bit fatigued and light-headed - but it's definitely more manageable. I wanted to share this with you because I thought maybe you could try it as well - inject at night and then sleep most of it off. Perhaps some of you already do this, but I definitely wanted you to know. Thanks again for all your wonderful insight that continues to help me.

[VellBlue]

Thanks for your post Justme. 🌼

I was wondering, are you taking methylcobalamin or hydroxocobalamin? I get weird affects, extreme weakness and whole body chemistry feeling awful, after methylcobalamin, but feel okay with hydroxocobalamin. Just wanted to share this with you in case your issue is with methylcobalamin rather than B12 generally - obviously it could just be the healing process. Great you have found a way of managing it nethertheless. 😊🌼

[Hidden in reply to VellBlue]

Good morning. (I'm in US). My health care providers use CYANOCOBALAMIN. I have considered looking into the other ones, though.

[VellBlue in reply to Hidden]

Probably just part of the healing process then. I've not heard of people having particular issues with that type of B12, but you could always try some other versions in sublingual form and see whether the effect is different, you never know! 😊 Hope you continue to do well. 🌼

[Nackapan]

Great you've found a way.

I've tried sublingual b12 and didnt do a thing for .me.

Alsso trued injecting at night

I was up all night.

For me it was time.

Also treating the symptoms as healing.

It did take alot longer than i thought to get on the upward curve..

Again just goes to show how different we all are .

Hope you make improvements very soon.

[Hidden in reply to Nackapan]

Thank you.

[Gambit62 Administrator]

Please note that the difference between high dose oral absorption and sublingual absorption is extremely small - goes from just under 1% to just over 1% with sublingual. Most of the absorption is actually from passive absorption - a process that happens outside the ileum. 1% is an average and, like most other things B12 there seems to be quite a bit of variation and there are a lot of people that find that passive absorption really doesn't work for them but its good to hear from someone who does find it works for them.

[Hidden in reply to Gambit62]

I forgot to tell everyone that when I went off the injections the doctor put me on 1 000 mcg every other day. Whereas the shots were a thousand every month. But thank you for the information... Now I have to look up the word ileum. I'm so new with this. 🥴

[Luac]

In the uk it is standard treatment to have 1000mcg of hydroxocobalamin injected intramuscularly every two days for two weeks or until neurological symptoms stop improving, then every two or three months. It is widely accepted that oral tablets dont work for PA as the lack of intrinsic factor means it cannot be trasported/absorbed into the bloodstream. It may work for some - im guessing there may be some level of IF still useful.

I needed more than the uk guidelines stated so i self injected hydroxocobalamin every two days for six months and now on a monthly basis. Im fairly happy with the outcomes.

I have not had the reactions you are having, I would suggest you try hydroxocobalamin if that is available to you.

People react differently to the different types of b12, and indeed your symptoms may be part of the healing.

I hope you find the right treatment. Are you noticing improvement to any of your b12 related symptoms?

[Hidden in reply to Luac]

Hi Lu...I think my situation is a bit odd. I don't know if I have PA for sure as my IF tests negative but something called parietal cell is not normal and measures 1:160. As I mentioned before, I have autoimmune atrophic gastritis which I think prohibits B12 from being absorbed through my stomach. I did have a paternal great aunt who had PA so I guess it's in my genes. I stumbled upon this website when I was desperately trying to find info on B12 deficiency and negative side effects of therapy. To answer your question about whether I feel any better, I do in that I have a little more energy and less dizziness since taking B12 at night (although my TSH was way off and had my synthroid adjusted recently so that could be a reason as well). On the downside, I'm noticing my left toes are more numb than normally and slowing creeping up the front of my calf. I see my endo in a week or so and will ask her about it. I don't know about the UK, but here in the US we seem to have a billion specialists but not one doc (like the old days) who handled everything. I miss that.

[MoKayD]

When I first started getting my B12 shots I also felt unusual sensations for a couple of days afterwards. I would get a huge burst of energy and would have trouble sleeping for a couple of nights after a shot. Sometimes my head would feel weird or I would get tingly in my legs. I just tried to ignore it because I knew the shots were helping me. I really think all of the strange sensations were actually parts of my body waking up and healing. Now I get a shot once every 3 weeks and I don't even notice it. I guess B12 has corrected most of my physical issues so I'm just maintaining my body's health. I will say, if I wait longer than 3 weeks for my shot I will notice I received a shot but it feels good, not bad.