I struggle with severe fatigue despite frequent b12 injections for the last 2 years.
Is it possible that long term b12 defiiciency can cause permanent or lingering fatigue? Or would there need to be another cause?
I have done lots of testing and nothing ever shows up. I do have a thyroid problem but it's well taken care of. Most of my b12 symptoms went away within the first few months to a year, except this fatigue, among a few other symptoms. I feel so weak, fatigued, constipated, etc. I wake up with not enough energy to function properly and it stays that way until I go to bed. I even have trouble with conversations, slurr/mix up words, have trouble thinking of anything to say at all due to fatigue. After a few hours of work I feel like I become so exhausted I feel delirious as if I have been up for 2 days straight. I don't feel like I am on my death bed anymore since b12 injections, but I'm far from well. Could this be from b12 still??
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2 times a week cyanocobalamin. Was doing even more frequent than that for the last 4-5 months but I couldn't tolerate them. The longest I have ever gone in the 2 years is 2 weeks. But that was last summer, only for like 2 months. The rest was at least 1 a week or more
Thanks for your reply! I have went down the thyroid route, changing thyroid meds, changing doses, spent so much money on naturopathic treatments, diet, supplements, etc. Literally years of my life trying to "fix" this thyroid thing, and I literally can't get any improvement past where I am at now. Which I feel like is no where because I have only continued to decline.
I was on more frequent injections for the last 5 months but decreased to twice a week due to having enough of the side effects. I get even more tired, fuzzy vision, severe brain fog, feeling almost stoned unable to comprehend things with injections that high. I pushed through it for 5 months and I can't do it anymore
Only supplement iron if you've been proved to have a lack of it. Excess iron is [probably] worse than not enough of the stuff. At that point, don't carry on taking it once you've been shown to be iron replete.
Are you sure you are in the upper ranges for folate and vitamin D? Potassium, magnesium and iron?
All these are required in plentiful supply for the B12 to work properly and deficiencies of each of these has "fatigue" as one of the main symptoms.
Are you "better than OK" for all the B vitamins?
The fact that increasing your B12 makes you feel worse after a certain frequency suggests to me that you are short of something vital to the process of damage repair using B12, and therefore if you get enough B12 to do more repair, you become deficient in something else and get additional fatigue as a result of that deficiency.
The only other thing is, is your body methylating properly? Can you get any benefit from taking methylfolate instead of your folic acid or taking additional methylcobalamin sublinguals in addition to your jabs? You can try it and see if you get any improvement. Just go gently because too much can cause a stonking headache if you don't need it.
Please don't take my personal tactic as recommendation - it is not really responsible, plus we are all different and I have other issues too but...
I know exactly what you mean!
OK I'm not without fatigue but I have improved things radically from the point you are now at by trial and error with vitamins and minerals.
By chance I discovered that I craved Thiamine (B1) and then that I improved when I took additional B-complex tablets, in addition to that in my multivitamin and mineral supplement. I haven't been able to get blood tests done for the individual B vitamins but saw that I was definitely getting a response which tailed off if I didn't get them.
In the end I have increased the number of multivitamin and mineral supplement tablets I take each day and it has made a big difference to my fatigue - and I have been able to reduce the amount of additional potassium and magnesium that I have to take separately as I'm getting them from the multi.
There is a lot of worry about having too much B6 but there's only about 2mg or less in most supplements and the daily upper limit is 100mg so in fact it is not a problem and B6 is just as vital as other vitamins. It's best taken in the morning.
If you already have good potassium, magnesium and iron levels then it might be worth trying taking an additional B-complex in addition/as an alternative to your multi so as not to overdo things.
I hope this gives you a few ideas for starters. I'm sorry if I'm rambling - I'm tired and have a migraine to boot.
If nothing like that works then it might be worth finding out if you have some other underlying problems - for instance I have a virus that causes shingles symptoms and I am now taking a daily antiviral to keep it suppressed and that really helps.
Thank you, I appreciate your reply and glad you found some things to help you. I have tried multivitamins, prenatals (which have iron), methyl folate/regular folate, methyl cobalamin (injections and supplements), cyano injections, cyano/hydroxo supplements, vit d, magnesium, epsom salt baths, foods high in potassium, foods high in other nutrients, b1 (supplement & injection), b complex (suppmements and injections), vitamin IV with high doses of water soluble vitamins, etc. I have also tried not taking vitamins in case I was over doing it. My levels of all the vitamins you listed have been normal. But despite all of this, my fatigue is the same. I have been on a journey for many years. Which is why I am wondering if the fatigue could just be permanent or something, and wondering if others experienced the same. Doctors haven't found anything else, unfortunately. I don't want anything to be wrong, but without finding out what it is, I can't fix it. I really do appreciate you writing out such a thorough post though! I'm sure others who read it will also find something helpful for their own journies!
Thank you for your very kind, patient and detailed reply. I feel that I should remember and I'm sorry that I can't remember anything tonight or think straight! I'm glad you aren't taking it personally.
You are an inspiration to others for trying so many things so thoroughly and carefully.
I'm not sure how old you are but could it be anything to do with female hormones? They can be pretty crippling.
Speaking of hormones, have you looked into cortisol, adrenaline and melatonin levels?
You don't sound like you have any issues with sugar processing or diabetes so I'm ruling that out.
Heart and circulation OK?
It's not a lack of sympathy coz you have that in abundance from me alone! 😃
I just wish I could think of something that might help! It's my bug bear and when I can occasionally get the right balance of everything and have a good day it really shows how different life could be without it. On a bad day I make so many mistakes and do such daft things that it takes several good days to unravel the problems I've caused myself when I'm mind numb with fatigue. I'm still looking for my car key that I lost at home when I came in too exhausted to put it somewhere safe about 4 weeks ago! 😔
When I get over this migraine I'll try to think more carefully. I hope you find something soon.
You might try hydroxocobalamin. On cyano me & my family members go downhill very quickly. You can get hydroxy in the US on prescription but I'm not sure about Canada. Otherwise you might try ordering from Germany (when it's not so hot here, i think we're in the middle of a heat wave this week).
The other things that come to mind are folate and iron levels. Perhaps celiac. Have you ever had potassium measured during such a spell?
I personally need 5mg folic acid every day even though blood levels are ok. My mood and energy levels go downhill within 2 weeks if I skip it, and if I go longer without then the typical b12d symptoms return - tingling, vision problems, dizziness, off balance, etc. I SI daily.
Hi Jade - that's interesting: I too have to take high doses of folate despite my blood tests for it being off the scale (>20). I'm crippled without it to the point that I don't care if it might be harmful in the long term - I won't survive the short term without it!
Oh interesting! Same here, always >20. From my readings, I'm not convinced it's harmful. Plus in our case we take b12 daily so it's for sure getting used up. Have you ever had RBC folate tested? I have several times, and there it's always within range. So makes me wonder if there's some folate absorption issue there was well.
No, I haven't but know I have quite severe absorption and metabolism problems with it - and lots of things.
With enough digestive enzymes (I have severe EPI) I'm able to absorb more, better quality folate from my diet and that helps. Otherwise I have to rely on absorbing methylfolate through the membranes in my mouth. 👍
I have been exactly the same and all my blood results came back normal apart from low ferritin.
I have been on 400mg of iron for a month now and it has been a life changer for sure.
I self inject every other day but like you I was still severely tired.
I have had daily diarrhea since November so I thought perhaps that was why I was tired but the low ferritin was causing me so feel drained. I'm definitely not 100% but I'm getting so much better.
I’m sorry to hear this, I was also the same, what works for me is taking Lmethylfolate as it’s not uncommon to not be able to convert regular folate, especially with our conditions here,it’s cheap to buy so maybe worth a try !
Like you, most of my symptoms disappeared with injections and my energy increased. However, I feel my energy reducing recently despite injections 3 times a week. I also have thyroid issues but feel that these are in as good a place as they can be, now that I pay for and take ndt, which helps me way more than Levo. It is frustrating as I feel I’m helping myself in every way possible and doing all the right things. I hope you find a solution to your situation.
So sorry to hear you feel so unwell. It sounds so similar to how I was feeling when I was first treated for B12 deficiency.
I'm not a doctor, just a woman who furiously studied all I could with regards to B12 and refused to take a diagnosis of chronic fatigue syndrome laying down!
I have no experience with cyanocobalamin, as my doctors started loading doses on hydroxocobalamin, so I continued with these.
My symptoms sounded very similar to yours before I got the B12 I needed. Doctors told me loading doses for 2 weeks, then once every 3 months. I didn't have the energy to correct them (I too had neurological symptoms, but even when I presented them with ALL the research, they ignored my pleas) so I started S.I.
This was twice a day at first, I used my symptoms as a guide. I made sure I had iron, potassium in plenty of foodstuffs and foliate. This was for about 3 months. Then I dropped to every day for a few months, then every other day, every 3 days and finally weekly.
After about 18 months I felt well enough to have monthly doses, but if I am unwell for any reason, sometimes symptoms start creeping back in. Brain fog, trouble with word recall or numb hands on waking.
Sometimes we need to really listen to our body, and B12 deficiency is one of those times. I hope you manage to get the treatment you need.
If you get worse after a b12 injection I think you ate on 'catch up' and need a higher frequency .Took me a few years to have my b12 injection whilst feeling okayish
Alien to me
I'm still working g on crippling fatigue and much more
I tend to introduce one thing at a time .
Presently upped my b6
Still wouldd like a full nutritional blood test.
Definitely found if alit of one thing needed puts other things out of whack.
Is your weight okay.
Little abd often food hrlia me as less to digest and keeps blood sugars stable.
Try to avoid 'boom dbd bust'
I'm not good at that as if I feel okayish I want to get jobs done.
Lije hone cooked food in the freezer ect.
Keep a diary of food snd activity .
Try hydroxcobalamin as supposed to stay in your system longer .
Saying that my Canadian friend tried all sorts at a cost!!
I’m currently having this same problem so I’m loving this post. I attribute my issues to spacing out my injections to once a week for 3 months and then trying to exercise resulting in my B12 being depleted. I am back to daily SI and from experience know it will take a while. I will also try some of the other things mentioned here.
Like you, docs have ruled everything out so I am going to a functional medicine doctor for hormone testing as I am perimenopausal.
I’m definitely far better than before starting SI.
Hang in there. And let us know if you find out anything else or discover what helps.
Others have given fuller answers & suggestions. Just want to say I am in the same situation. I have learned that b12 injections can deplete other nutrients ( esp potassium). I am now trying electrolytes and other vitamin supplements along with “pacing” - trying not to deplete the energy I have on a daily basis. But it’s hard when you have responsibilities to others. You might want to try a functional medicine doc if you are in the US. Or something similar elsewhere. I am in Germany, and heading off to a TCM Klinik next month. They specialize in ME/CFS. I was able to achieve some solid progress with a Myer’s Cocktail type regimen - but still struggling with terrible fatigue, pain, & some lingering autonomic issues. Sending sympathy & wishing you luck.
I’m so sorry you are having such profound fatigue. I am almost 5 years into treatment, with twice a day injections, and while my fatigue is not as bad as yours, it’s not really improving, so thank you for asking the question. It’s interesting to see the answers. I have 2 thoughts. First, I’m wondering why more b12 makes you feel worse. I always think the feeling worse has to do with some reconstruction going on that is going to lead to healing, so maybe you do need more. Second, I have a friend that could never get her thyroid meds right after decades of trying they finally removed her thyroid and then they were able to get her meds right and she finally felt normal again. I’m not sure if either of those are helpful. I do hope you find something that works
Oh, also, I do find I have much more energy in the summer or if I travel to the sun in the winter. I also benefit from using a red/near infrared light. It boosts my energy and helps with my aches and pains
I wonder whether your thyroid issue is as well managed as you believe? It doesn't sound to.me as if varying frequency of b12 or other supplements have made ny significant difference.
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