You may be low on electrolytes and b12 requires things like potassium to metabolize.
There are pills or just natural foods with potassium. As a side note potassium can be deadly if taken too much so just stay within the RDA and no worries.
Also, I had heart palpitations when I was recovering. I kept doing the daily injections and eventually they went away. It was scary. Never hurts to get checked though as only you feel you.
I have been trying to have Bananas and coconut water, but maybe I have missed out magnesium. Is magnesium something folk need when taking b12? I have supplements for that here and magnesium bath salts, so I will definitely try that.
Seeing my Dr tomorrow, so gonna ask her to check my U & Es, ecg, and a few other things.
Not sure how versed she is on b12 stuff, as my b12 help has been private.
Thanks for letting me know too that you had palpitations at first too. How long did those take to calm down for you?
no. it just helps with muscles however I found my muscle tightness is, in my case, a primary symptom of my b12 deficiency. It's the first thing I notice when I space out injections and get low again.
When I was first diagnosed I thought it was some other cause, stress or tension from the stress; or my body was just broken.
SOOOO NOT BROKEN. When my b12 levels are normal, my muscles relax, my back pain and peripheral numbness goes away.
My symptoms didn't fully resolve until about 2 years of daily injections and I think if I had done more than one injection per day that it would have sped things up; however, I think people should go at the pace they are comfortable with. whatever you do, don't space them out .
About one month in I got achy all over, radiating all through my body and the way to the bones. I felt like death. but that's is part of the phenomenon that is stated as "gets worse before it gets better". this happens because the nerve cells that were once starved are now all coming alive all at once. It took a month to get over that. then there was the heart palpitations that got way worse in the evening. scary as hell.
then muscle weakness...
then a resting heart rate of 105. again, unnerving.
somehow, things like the weakness are the symptoms of b12, along with some of the things like heart paplpitations are part of the healing process. No idea what. But to me it's a sign of the damage that was done and being repaired. the good thing is it can be repaired.
I wasn't nauseated but I had lost my appetite. that is a classic b12 deficiency symptom.
There are 3 reasons I hang out in this forum:
1 - support. the community is amazing. like family
2 - legit advice either from clinical restuls (people trying things and reasonably reporting what worked) or from medical journals. all a bunch of pretty intelligent and/or dedicated people.
3 - my intense empathy for those who are starting this journey and in the place I was; helping people overcome the fears and doubt and helping best I can based on my experience. I don't know it all but people here seem to fill in the gaps.
You found this forum. It's a giant step toward your healing because it is hands down the best forum on the internet for b12 deficiency.
How long since you started injections?
what was your b12 level before the first injection?
I was just reading your post and thank you for staying involved with us, so when you say you were spacing the injections out , how far apart were you spacing them apart, I'm at everday then I'll change to every other day and I'm still feeling really fatigued and depleted, so yesterday I started to add the sublingual liquid meth b12 so and today I did both tomarrow well lets see how I do with the oral only, but Isure do want to get on top of this. Im on my month of injections only then the last six months were only liquid oral, I should have started injections long ago but I've learned so much on here with everyone coments,
Everyone is different but I learned that in my case I absolutely do not absorb b12 orally in any dose. I tried every type of variation of frequency of injections and absolutely must inject at min 1mg daily, sometimes I do 3mg daily but too much starts disrupting my sleep and that's when I back off. Mostly my reason for needing more is I somehow depressed the b12 by not injections (forgot my b12 on my vacation) and drinking alcohol while doing an extreme amount of exercise. That combination depleted my b12 and it took 1.5 months of injecting 3mg/day daily.
Also once you start feeling better start doing short mild exercise such as walking. Overdoing it will set you back, so don't do it until you feel good and ease into it to see how your body responds.
B12 isn't like insulin and glucose where there is near immediate reaction, it took me 1-2 weeks before I feel the effects of spacing the injections and by then I've really set myself back.
I suggest to at min do eod. Until all your symptoms resolve. Then and only then space the injections. For me, I never will be able to but some have, so it's an individual thing.
Thank you so much, this was so refreshing to read over again as well, I read it twice and especially how you have resolved your symptoms, I just left the Dr. and asked the front desk that I need my script changed to EOD. I have appt Wednesday. and they will inject me on Wed. but then at the pharmacy I can get them cheaper with the cyano. I hope the Dr. agrees. I even started to gain more weight so it is working. the symptoms though are so scary and painfull, thank you for reminding me again.
PAS has a letter to use to justify injections if you feel you need it. I couldn't get docs and pharmacists on board so I just got my own supplies and self injected but if your doctor is cooperating, work with them. It helps them see how much the injections help. Just like it takes years for our b12 to deplete, (4 years minimum unless huffing nitrus oxide which would accelerate depletion), it will take years to get repleated and back to normal. so have patience with yourself. significantly reduce your expectations on yourself if needed. bring it to a minimum. it will help with the sanity.
yes I was going on walks there for a while everyday then spaced out my injections last month and had only had 3 injections total and thought I was done. wow big mistake I had to start everyday for 10 days for my feet to get better and everything else. I get what you said about stopping uh I won't do that again. I'm 60 years old and lived a super active life of running and exercise I hope one day I'll be able to go back if not just to be able to run around with my grandkids again. I do miss that. but I know it's still early in my injections, I live on the Cal border and it's hot here for now
take a b multi vitamine if you feel well enough. that should help too.
Once you get more down the road, we can add more things that will help with your anxiety.
b vitamine deficiency can cause anxiety but best to start with one thing at a time and if your b12 was low, I say start there; the reason is, it can be overwhelming and if mixing several solutions it gets hard to pinpoint what is working and what doesn't. so best to keep it simple. unless there is clearing something else that for sure needs treatment like thyroid, but if things like thyroid have been ruled out, then keep it simple and just do the b12 injections. give it about 6-8 months then start adding more b vitamins. hit us up on this forum and ask us specifics about what other b vitamins we take and how.
well, they say hydroxocobalamin is the best however, because i'm in the US I could only get cyanocobalamin. so that's what I started on. I tried to switch but decided that it would cause confusion so I've been on cyano. I recommend starting with hydroxo. Others use methylcobalamin. so ask a new separate question on this forum and it will be interesting to hear what different people do.
All in all, maybe one day I'll try and switch. At least I am back on my feet and competing with the wolves at work again as well as am able to be very active.
wow your back at work that is great news another positive to hear of there is light at the end of this. the mind things that go on through out the day is hard as well as the body, well I am also in the US and have tried the methyl b12 oral that I started with 6 months ago and I still use it in the day. I feel the cyano is kind of smoother it seems and more stable. but there are so many changes in my body and mind for right now moment by moment but it is getting better as well. tomarrow is my day without injection, lets see how it goes. I woke up so many times last night with having to drink fluids eat snacks and take more b12 to get the neuro symptoms out of my feet and my blood pressure gets so low it was kinda scary. I will address that on Wed. with the Dr. appt. I'm not sure if anything can be done with that except time.
I was going to ask one more thing, where do you get your b12 cyano from, do you order yourself or get it from a Dr.? I've been wanting to look around myself. I did see on amazon they have b12 patches but I'm not sure how that would be
Lots of good advice above. Yes I drank a lot and spent almost three months in bed after loading doses. I was extremely sensitive to noise so the family washing up (which was a blessing) was too painful on my ears! I drank about 1-2 litres water during the night as I was constantly thirsty but I never noticed it as a symptom until you said. I don’t drink as much in the night now.
I wish you all the best with your GP and hope you have a rare gem and get support.
Just don't overdo the water/drink in excess. I did that and ended up in hospital for 2 days as I'd flushed out my sodium. Needed 2 saline drips to top it back up.
Hi, everything your going through right now I went through 6 month ago, I’m still injecting and still in the process of healing, it does take time… much longer than other deficiencies out there, but the thing I found confusing was that my neurological symptoms were improving, but my haematological symptoms such as fatigue wasn’t improving, which made no sense, since haematological symptoms should improve first, but l’ve recently discovered that I have very low ferritin levels aswell which makes sense why my fatigue wasn’t improving, since it’s easy to assume it’s all related to B12 deficiency….
All the symptoms you’d experience from low iron levels you would also experience with low b12, in alot of doctors you need a ferritin level below 10 for it to be recognised and treated…. But there are many sources that state a ferritin level of 70 and lower can cause symptoms, you should definitely continue with your b12 treatment, but it might be worth checking ferritin levels since it would be impossible to tell the difference between symptoms of one or the other… and we can sometimes have multiple deficiencies due to absorption issues.
My only other thought, after reading thoughts of others, is have you been checked for pre-diabetes, or even diabetes? I am pre-diabetic and if I let my sugar go too high I drink an uncanny amount of water which sometimes doesn't satiate my thirst.
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