Asking a couple of questions- thank you ☺️

[Rex2020]

Hi everyone and thank you for having me. New here .. I have a question.. low B12 lots of bad symptoms.. started injections almost 7 weeks ago. I still have good days and bad days. I was really hoping it would be better by now (sigh).

But I am ever hopeful that one day I will be back to normal.

My question is.. should I ask for MMA and homocysteine blood levels now even after 7 weeks of injecting? Will they be corrected already?

Also I just thought of another question.. I feel like I have too much B12 (I know you pee it out etc etc) but did anyone feel better when you stopped doing so many injections? I am taking methyl once a week and the last one 2 days ago has knocked me off my feet. I was feeling a lot better before this injection... and my most recent blood test showed high off the charts levels.

Thanks for taking the time to answer.

Rex

[Nackapan]

Some have undesirable effects from methyl . Most have cyno or in the UK Hydroxocobalamin.

I also at the beginning felt overwhelmed by frequent injections. I got alot worse before any improvements. It is early days for you. I do believe at certain levels we can feel a bit better but impossible to know or find out what that level is or maintain it . That's why frequent injections stop the fall but we can feel topping up overwhelming. It can take years for your b12 to deplete si it's not usually a quick fix unless caught in the nick of time.

Snakes and ladders but eventually moving forward.

This happens at a different pace for everyone.

I personally found 'pushing through ' got me nowhere.

Keeping moving is important but difficult as we all want to feel like 'our old selves' and go onto automatic until tour body says otherwise. I still say bright and willing mind and unwilling body.

Hope you make notes and make improvements very soon.

[Rex2020 in reply to Nackapan]

Thanks you for the reply. It’s 330am my heart is racing and I’m shaking all over. This is just terrible. I can’t figure out if it’s the problem or the cure. I am going to stop injecting for a while and see if things level off.. I’m surely topped up with B12 by now.

[Seth12345 in reply to Rex2020]

It can also be the case that you are simply recovering.. The recovery is BRUTAL at times. Many of us have experienced severe anxiety during the initial months of the recovery. It does get better though.

If you have a b12 deficiency DO NOT STOP injections because the recovery gets tough. It means you are healing. It's very common for symptoms to get much ride than they were previously. It's also common to have new symptoms develop.

Personally I would suggest using hydroxocobalamine as a fist choice and if you don't have access to it try cyanocobalamin. I will not use solely methylcobalamin as you will then also need to supplement adenosinecobalamin with it.

[Rex2020 in reply to Seth12345]

Thanks so much for your reply. I had an iron infusion and the palpitations have stopped. Still got some tingling sensations and other twitchy stuff.. from the low b12 it’s been about 9 weeks now since I started injections.. so I know there’s still time.

I am going to try cyano now (instead of methyl) once a month and I’m taking 500mcg a day pill. I’m hoping for better days ahead.

How are you doing now? Any advice for me?! Thanks so much

[Dolansan in reply to Rex2020]

Same here, palpitations stopped after iron infusion. Recovery is very slow for me as well. I’m taking Hydroxocobalamin injections 1000 mcg every other day since I have neurological symptoms. I’m also hopeful to go back to normal, or at least mostly normal I also assumed recovery would me exponential after injections but this experience is teaching me to be very patient.

I was vegan/vegetarian for many years. I wasn’t smart with supplementing. I felt very healthy and energetic until all these symptoms hit me so quickly. Doctors were so puzzled, some believing it as psychological because I’ve mentioned to have been stressed. But I did my own research and feel that recovery is nearing slowly.

Wish you the best !

[Rex2020 in reply to Dolansan]

Almost the same situation.. mostly vegetarian, daily drinker, no supplements and my symptoms came on overnight like a freight train. It’s really been quite the humbling experience. The injections made me feel so ill but I do feel like I still need them because I have tingling feet and a strange buzzing sensation in the back of my head. I would really like that to go away.

How long have you been injecting b12 and have you seen a lot of improvement so far?

[Dolansan in reply to Rex2020]

I have just recently started injections almost 3 weeks ago. I’ve noticed that my strength (due to muscle weakness)has been very slowly improving. The neuropathy (tingling, prickling, nerve pain) is still there (since nerves take time to heal) however I feel the pain subsided a small fraction. I’m hypersensitive to how my body feels day by day. I also experience shallow breathing, that hasn’t subsided yet unfortunately. My voice has also been afflicted, its mostly hoarse if talk frequently, this hasn’t made improvement yet.

I also take methylcobalamin sublinguals every day since b12 isn’t toxic in large doses, Im doing whatever necessary to recover from neuropathy. Since your also experiencing neurological conditions you should look into frequent injections. Check the case studies and conclusion from this article:

The Many Faces of Cobalamin (2019):

ncbi.nlm.nih.gov/pmc/articl...

Also, are you supplementing on iron? It’s advisable to continue supplementing with iron for a few months ex. ~4-6 months after iron levels go back to normal , I found this info in a hematology website. GPs May not aware of this. In fact, once my iron serum appeared normal my GP suggested I stop supplementation , however 2 weeks later my breathing became more shallow. I restarted iron and breathing felt progressively better . I’m also seeing a gastroenterologist to make sure I’m absorbing nutrients well, and also scheduling with a hematologist to comprehensively evaluate my blood since I appear to have microcytic cells, perhaps due to low iron stores. Just making sure I don’t have an underlying conditions.

[fbirder]

Some people, me included, have really bad reactions to methylcobalamin injections. If, as I suspect, you are in the USA, I suggest you ask to switch to cyanocobalamin.

There's almost certainly no point in testing MMA and hCys as they will, almost certainly, be normal by now,

[Rex2020 in reply to fbirder]

Thank you 😊 fingers crossed for better days ahead

[Nackapan in reply to Rex2020]

Yes I hope so.

[Dolansan in reply to Rex2020]

Hydroxocobalamin is also available in the US through prescription:

empowerpharmacy.com/drugs/h...

[Rex2020 in reply to Dolansan]

Thank you! I’ll have a look. And you were right the MMA and homocysteine were normal 😊