Hi
I am in B12 injections 12 weekly via my Gp surgery. I was given them due to low B12 levels over a year ago. They won’t do any more frequent than 12 weekly. However every time I get a B12 injection I am completely floored and feel exhausted for days sometime a week after it and that’s not the effect the B12 injection should be having. Does anyone know a reason why this could be happening??
Many thanks
I've often wondered why that happens.?
If doesn't happen every time with me .
I am on frequent injections.
How are you inbetween.?
Push for at least 8 weekly if you feel you need them.
Put it in writing to your gp
It could just be something to do with body being in healing mode, using up a lot of resources. Hopefully this will improve over time. Have you checked for other deficiencies? Vit D, folate, magnesium etc?
Some of us find that we are better with one type of B12 than another (me, I get very weak after methylcobalamin injections, but not hydroxocobalamin), I guess if you are having the injections at your GP surgery in the UK it is hydroxocobalamin? Do you have a PA diagnosis or are you able to also absorb B12 from supplements? You could try supplements of cyanocobalamin or methylcobalamin to see how they help (in addition to the hydroxocobalamin injections).
Hi mistyped, I had a terrible reaction to a hydroxocobalamin, it wiped me out for 3.5 weeks. I won't have it again but daily sublingual methylcobalamin tablets with multivitamins and Spirulina are working for me. It really is a trial and error process to see what works for you. Do your research around the symptoms you experience and what can support you to return to normality. With B12 I started low and gradually increased to a level that means I can last the day without needing to nap during the day. Best of luck.
Hi - really curious about your reaction. My situation is quite advanced with neuro damage. I started 2x a week hydroxocobalamin 1 mg (plus 1.1 natriumhydrogenfolat). 1st night too wired to sleep. Two days later, fatigue, joint & neuro pain, & brain fog are out of control. Can I ask if this is similar to your reaction? I had IV supplementation years ago & I don‘t remember feeling worse for it. Thank you - hope you are doing well.
Hi SigNi,To answer your question yes the brainfog was terrible. I remember an hour after I had the hydroxocobalamin injection I experienced sharp stomach pain and I lay down to rest. I must have taken care of my daily basic wellbeing but other than that I was sleeping from exhaustion and the brainfog was so severe I have no memory of the next 3.5 weeks. Once I was able to function again I did a lot of research and started trying different vitamins to see what seemed to give the best results. Best of luck with your recovery.
Have you been diagnosed with PA and do you have neurological symptoms? If so you need injections much more often!
I started hydroxocobalamin injections 2 days ago. 2x a week for 4 weeks. And then we assess. I feel terrible. Big increase in pain and fatigue & other side issues. I‘m hoping it‘s just a side effect of my blood cells kicking into gear. 🤞🏼Hope you get better results soon.
Hi,
Yes I do. However I think my exhaustion is from a few different things which I wanted to mention in case it helps.
Firstly I discovered last month that the lockdown and other things has contributed to me developing below normal Vitamin D which in itself causes a strange kind of confusion/brain fog but also causes exhaustion. In fact I was flat on my back for a week taking loads of iron and some b12 but it was actually vitamin d problems. Aside from that I get a strange exhaustion with other symptoms about 6 weeks after a hydroxycobalmin injections fairly regularly and I know I get a craving for iron around that time too. I don’t know what is causing it but I sometimes wonder if a host of changes happens when hydroxycobalmin goes low in the in-between phase of the hydroxycobalmin injections. I now give myself additional hydroxycobalmin every 2 weeks and I don’t get so a noticeable period of exhaustion.
Also, I do remember though that contrary to medical opinion that goes along the line that ‘you are fine now you are getting injections every 12 weeks’, in the early phase of hydroxycobalmin support that nerve damage and other symptoms take a lot of care and time. Even after 5 years of injections I am discovering that I am still healing and in fact need more support. I didn’t realise it properly after diagnosis because I didn’t have enough physiological energy to be able to have much thought about things and what was happening.
As a background I was diagnosed with autoimmune B12 deficiency in 2016 after 3 years of severe neurological-psychological symptoms, e.g. losing awareness/speech/walking periodically. Unfortunately when I got the diagnosis they didn’t retrospectively apply the diagnosis to my symptoms, so, like everyone else, I received hydroxycobalmin every 12 weeks. Last year after assessment the hospital recommended hydroxycobalmin every 8 weeks but my GP took 9 months to change the frequency. Even so I still get pins & needles etc and more recently fits in the middle of the night. So I would say educate yourself as best as you can, get a loved one to help you understand the significance and consequences of pernicious anaemia until you feel really well. Also don’t assume exhaustion and pins & needles is only B12 deficiency…. I had to get private blood tests to understand my situation a little more.
This is so helpful. Your situation sounds very familiar. I realize I have had this for years with doctors telling me it was menopause or just "somatic." I have had so many moments when I believed I would simply die from whatever it was. I guess I wasn't far off. I am fortunate at this time that I am able to self-refer here and found a doctor 3 hours away who has an "interest" in biochemical illness. He was worth the drive as he talked to me for over an hours and tested me for about 6 pages of possible deviations. A week later he emailed me the results and said "your symptoms match your blood tests." I cried. The irony - he's a psychiatrist. All the non-psych's said my issues were "somatic." The trained psych said, "Most of this is organic and not psych." And this was before blood tests. I also have a number of vitamin deficiencies that I am trying to address one at a time if possible. I want to know what is causing what. This community has convinced me to learn how to self-inject. I switched over to a new GP - a female neighbor, and she is supportive. But I don't want to have to depend on anyone for prescriptions, etc again. They are still trying to figure out why I am not absorbing as my diet is fine. I even spent time at a University Tropical medicine clinic last week - but it will take a lot of time to get those labs back. And I ordered genetic sequencing from the US. This is what desperation looks like. It looks like I have a hospital stay coming up with internal medicine that I am dreading, but know is probably essential. After almost a decade of struggling I hope to finally find out the source. I am afraid of what is irreversible. So good to know you are still getting improvement after five years. It suggests I may need to keep injecting for the longterm on my own schedule - and as you suggest keep an eye out for other deficiencies. Medicine has never been my strong suit - I'm a humanities type - but misery is an inspiration. Thank you so much for all the details and suggestions. It's greatly appreciated.
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