Hi. As previously mentioned, I've been SI 1000mcg Hydroxycobalamin every other day for just under 2 weeks. At the moment my neuropsychiatric symptoms are very bad, and (unfortunately) seem to be getting worse daily at the moment. Am taking co-factors, but am being tentative with the potassium addition as I'm taking a medication which maintains the body's potassium.
Am contacting GP as seem to be spiralling into full-blown depression, which borders on suicidal at times.
My other symptoms (as before I started this journey) are rapid weight loss, loss of appetite, breathlessness, brain fog, loss of balance, inability to find words. This came on rapidly a couple of months ago, although had had other symptoms for a while as well. My folate was very low (2.6) and active B12 low (33) but my iron was actually pretty good. I did take 5mg of folic acid for 6 days before I started the injections, hoping it would stop the B12 from depleting my meagre folate, and vice versa. I'm still taking the folic acid and gentle iron EOD.
However, when I've self-injected recently, the symptoms almost completely disappear for 4-6 hours. My appetite returns, I don't feel depressed, my cognitive functions improve dramatically, and my wife even says I look a different colour! After 4-6 hourse I feel things tailing off and by the evening I'm back as I was, with sleep the only relief. The next day I'm back to feeling terrible until the following day's injection.
The other thing that has happened the last time is feeling incredibly cold after the injection, to the point I'm shivering in warm sunshine.
Do either of these reactions sound normal? How can the B12 injection have such a marked (if temporary) effect? Do others experience this?
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Perhaps you should email Dr Klein and see if he has any thoughts. As it is very early days for you. It may be you need to do every day for a while. Sorry can’t offer any more helpful advice. But I hope you soon find some relief, it’s a rough time.
Thank you again. I did email him (unfortunately I think I've driven him mad), but he insisted I should stay on EOD in order to let the body heal. And it's 100% not a psychological effect from the injections - The difference is startling almost immediately, even to others.
I’m probably not helping by saying this, but it may be that the B12 injections haven’t started working yet and it’s still the deficiency that’s causing your problems. If you are worried contact your GP they may prescribe something short term. I know it’s hard waking up every day and feeling like there’s no way through it, but you have to believe there is and this is not you, it’s the deficiency making you this way, and it can be treated. 😔
Thanks. It's just such a huge difference physically and mentally so soon after I self-inject that my family it's like 2 different people! It's not just psychological. However, am speaking to GP today to request another prescription for anti-depressants. Just hoping that they don't make me any worse while I'm waiting for them (and the B12) to properly kick in - Couldn't get much lower.
I wouldnt mess with potassium supplementation, doubly so since you are already on a medication affecting potassium. You are already past the point where potential depletion of potassium when correcting anaemia (if you had anaemia) could even theoretically be an issue.
I'm not your physician but my 2 cents would also be to consider moderating your folic acid supplementation and maybe consider other forms if you take more than 400mcg (methylfolate or folinic).
Likewise you only need the supplemental iron if you are correcting anaemia or if you had problems absorbing iron due to low stomach acid from PA, but it sounds like you are absorbing fine.
Thanks. I'm tempted to get another blood test on my folic acid, as it was low historically (5-7), but not dangerously low until quite recently (2.6). The same with my iron levels now that I've been supplementing iron EOD for a couple of weeks on Dr K's suggestion.
I haven't experienced the neuropsychiatric symptoms (i had some anxiety, but that didn't worsen and has now resolved with injections), but I did get the shivering. I've probably been unkowingly b12 deficient since my teens and it came to a peak about 2.5 years ago when i was diagnosed and tested. About 2 years into treatment I suddenly developed feeling very hot and then very cold, totally unable to get the right body temperature. I put it down to menopause and started on hrt which quickly resolved the symptoms.
9 months later, the symptoms don't return, even if I miss my hrt for a few days (the oestrogen part involves rubbing gel on at night, so if it's inconvenient, I tend not to bother). I do wonder whether it was actually a b12 issue combined with some menopause symptoms. Once I've used up my supply of hrt I'm going to try without and see what happens.
If you are really struggling with symptoms as you start the b12, see your gp in case there is any medication you can have for short term symptomatic control whilst your body adjusts. I believe (not my area of expertise, so please don't quote me on it) that SSRIs do have a legitimate role in stopping hot sweats (i.e. temperature control) in the menopause, so they may also help with the shivers as well as the neuropsychiatric symptoms if you are not yet needing hrt.
Thanks, that's interesting. I am starting the SSRI route shortly if my neuropsychiatric symptoms continue to be distressing. However there's usually the 4-8 week waiting period for them to kick in, by which point the B12 injections may have had the same effect!
ok. So firstly your very early on. If you look at my posts you will see I’ve been very up and down. I got mega depressed at one point, was even crying which I don’t normally do being an ex rufty tufty builder. My understanding is low b12 stops the serotonin. So it’s the chemicals in your brain. It will get better but does take time. Equally if you get ill or stressed, something I had in buckets load this last month my whole system crashed again.
Did dr Klein see you if so message him. In my case he upped my injections to daily to try and help me build back a bit of reserve. Even then it’s taken a week and half for the worst of my symptoms to settle. This was as of yesterday was my first ok day again.
The shivers when hot I’ve experienced too. I was in a warm shower and all my skin went as if freezing hair standing on end etc. I think it’s the nerves on your skin not functioning as they should to regulate temperature. It should settle with treatment. I was told it would take 3 months of eod for me to fill any better and over a year until I feel normal. I am constantly tired for example.
Stay strong. You can pm me if you want to. When low just say it’s the low b12 it’s not you, or your fault.
Thanks, that's really helpful. Yes, I've certainly been stressed as well, and fighting a case of shingles, to add to the fun! I actually had a couple of 'good' periods in the last few days, but of course it's heartbreaking when the symptoms return with a vengeance.
personally that was normal for me. Luckily it wasn’t very long lived - hold on, take comfort in the fact this is a physical thing that’s affecting your brain and it WILL pass. How is your folate? I forgot to take mine for a week and went loopy. If you’ve started B12 injections they might have started utilising your folate which perhaps could also cause the same thing. I’ve experienced every symptom worsening then disappearing in exact chronological order they appeared (very freaky, watching the entire last decade basically flash before your eyes! It was like the symptoms were physically leaving my body!) and B12D is known for causing psychiatric issues. It was one of the ones that rolled back round in a last hurrah and then went. Mentally I am so much better than before. You can do this, personally I would try not to panic and try to remember this is the healing process, because if you come off B12 injections in response you will never recover from the deficiency and will be plagued for the rest of your life.
Thank you. Am trying to 'keep the faith', but obviously when things are really bad it's harder to make yourself believe it's a temporary stage. As you say, though, have to keep pushing on as what's the alternative?
Your experience is typical (with slight variations) of most if not all of us on here. It is complex and a struggle, especially in the early months. It is going to take time, I’m sure Dr Klein made the point that it can take a year or even several years to get as near to normality as is possible. It’s not easy to hear but it needs accepting 😕. But the good news is you’ll get great support here and as you educate yourself about B12D and start to experience sooner than later the positive effects of the injections you will grow in confidence. Taking co factors is going to be trial and error, as you get to know your body then you will make decisions on what to either stop taking or reduce the dosage period because we are all different. Dr Klein, having read my medical notes relevant to visits to surgeries concerning bouts of fatigue, suggested I had been deteriorating since my 40’s, over 30yrs. Over the past recent years that accelerated until last year I crashed. So I have been injecting EOD (sometimes every day during stressful times) for nearly a year but have experienced ups and downs during this period. During the year I was able sort out my cofactors as described above and have now settled on what works for me. Don’t overdo B6 in a multi vitamin unless you’re sure you are deficient. Dr Klein told me not to take it, I had been supplementing with it but stopped before I consulted with DK because I had a ‘gut feeling’ (metaphor) that it was interfering with my neurological symptoms. I take 5gm Methylfolate, was taking it daily, then EOD, DK put it down to weekly, my test results were >20. I take Gentle Iron daily even though these results are good, I also take vitamin D3+K2 combined. If I over exerted myself I would suffer with what I called my B12 headache as it was very specific. My final addition to my cofactors, this was suggestion from a GP on another forum, was Elemental Magnesium (I get it from Vitamin Express as powder called Synergy). This made a big difference and I haven’t had a headache since. Mg also has a calming influence on the body. I take 400grm with Kefir (fermented milk drink) just before bedtime. Sorry it’s a bit long but I just wanted to show how we need to self manage our condition and getting it right might take awhile. But a great asset we have is each other in this group (through whom I have learnt a lot and know I haven’t been alone on this journey…thank you all) so don’t be slow coming forward and joining the conversation and remember there is only one stupid question and that’s the one you either didn’t ask or felt embarrassed to ask. We all wish you well on this journey.
Thank you. That's immensely helpful. Will definitely check out the elemental magnesium. I've been taking magnesium glycinate, but surprisingly it hasn't had the calming response I'd hoped for. I have more luck with a magnesium spray before bed. I feel like if I can mostly fix the visual deterioration and the mood/psychiatric issues, I can deal with the other physical symptoms, as those two are by far the most distressing.
I think (and I might be wrong about this) that all magnesium has to be joined with something else (like glycinate, malate, oxide etc.) in order to be consumed, but that decent supplements will also state how much of the elemental magnesium is present. So for example I take malate in the morning and glycinate in the evenings; my malate states that a recommended serving is 1g magnesium malate but 140mg of that is elemental magnesium. The glycinate just gives the elemental amount.
It doesn’t noticeably calm me down either but it does contribute to me not having migraines.
Honestly? A fair degree of habit. I was advised not to go for citrate or oxate because of laxative effects/bioavailability respectively, and didn’t want to take a form that may be a more relaxing type (as I understood glycinate to be) in the morning, and just kind of fell into it. It does seem to have helped migraines along with other stuff but I’m not particularly wedded to it and open to new suggestions.
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Hope this is a blip...
Any advice appreciated as losing faith in my Dr! 
