Hi, I wonder if it is usual for the pins and needles and tingling to get worse after starting the loading dose? I had my first injection on Thursday,
I started getting tingling in a new place within 15 minutes of the injection. Since then it has been happening in many more different places, some for much longer periods of time than before or now permanent, and the intensity of it all has increased quite a bit.
I have been referred for nerve conduction tests.
The GP had told me I was having injections for a month, but that was probably off the top of his head, and then when I checked with the nurse on Thursday she said it was just for two weeks, and then every three months after that.
In view of all of the above, should I be trying to make sure I carry on with injections every two days until my symptoms ease?
Thanks in advance for any insights.
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rogergee
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This apparently is what is known as the healing process. I experienced the same to the point the symptoms became unberable. I requested I be given my injections every two months, to amazement my Gp agreed ! My symptoms were still as bad so I decided to self inject.
At first I did weekly injections without change so I tried doing them every other day. It has taken a long time but at last my symptoms are more bearable albeit they return if I have a flare of my other ailments or get stressed ! So do not expect too much too soon it is early days as yet.
I read something online where some people do get worse symptoms after a B12 injection but they had no reason as to why, where as others seem to cope on 3 monthly injections. Unfortunately we are all different with regard to healing and some need more B12 than other's.
I would most certainly carry on until symptoms ease but be prepared for worse before better. I am sure others will advise you further with regard to taking other vitamins alongside of the B12.
You can do no harm if you continue to self inject .I read on this forum that symptoms often get worse before they get better . It’s apparently a sign of healing . It’s one marvellous thing about B12 -you cannot overdose on it . That’s a huge comfort .
My symptoms got worse and also got nes ones. Tinnitus for one.Other break after loading supposedly waiting fir first maintenance injection I just got worse.
Trued sublingual b12 tablets ect
The asked for z higher frequency as 5 weeks after loading bedbound still.
The Gp put me back on every other day until no further improvement.
After pointing out NICE guidelines gently.
At the time I didn't want every other day again but accepted.
So yes it'd your nervous system waking up / rebooting.
Hi rogergee please check your folate and iron levels with your doctor (if not already done so) as they work with the B12 to make red blood cells.
As wedgewood said and I experienced fifty years ago after my first loading doses in 1972 some symptoms appear to get worse before they get better as the B12 starts repairing the damage to nerve endings caused by the deficiency and I'm still "clive alive" aged 80.
Well done Clivealive, you should be eligible for some award putting in 50 years of this!
I’m still treading carefully as my primary aim was to get the injections. I do know that my iron level is thought to be low and is going to be investigated, and my GP says this is unusual to be low along with a low b12 - I’m happy to be informed if that isn’t quite how it is…
I would point out to the nurse/GP that you have neurological symptoms and the protocol then is loading shots 3x per week until symptoms stop improving followed by maintenance doses every 2 weeks - cks.nice.org.uk/topics/anae...
it seems to be quite common for symptoms to initially get worse. Nerve damage actually takes a long time to resolve but B12 is also used to reset neurotransmitters and it is probably this that is causing your symptoms. Your brain has got used to very little by way of signals so its like having really turned up an old analogue radio to be able to hear when the signal is poor and then suddenly the signal comes through clearly and it's deafening.
I was wondering whether having the injections now will interfere with the outcomes of the nerve conduction tests, as in potentially make things seem okay because I’m now being treated.
Are nerve damage and neurotransmitters being reset two entirely different things? I'll have to try and do a bit of research on that.
I love the analogy with the old analogue radio - I quite often feel like I’ve lost my signal!
it shouldn't affect nerve conduction tests - and yes, nerve damage happens because cells can't repair the myelin sheath that insulates them so they can't conduct electrical signals. Resetting neurotransmitters is about the signal crossing between cells.
Hi Gambit, liked that nerve explanation! So I’m low normal Active B12 & suggested take supplement 3 months before retesting. What sort of ug daily dose would be suggested to achieve an increase in blood levels if anyone in same position? Folate & Ferritin are normal.
It's impossible to really advise on supplementing B12 as people vary so much. Some people don't respond to oral doses of B12 if they have an absorption problem.
I wrote a reply then lost it!! I gotvalot worse before improvements made.
My whole nervous system ' rattled '
The start of tinnitus
Headaches / migraines
Horrid but I continued .
Nice guidelines every other dsy until no more improvements.
After loading doses snd trying sublingual b12 and tabketsvyo get me to 3 months failed after 5 weeks back in everyother day . Gp agreed for me to go at my pace as no other reason found for my symptoms.
The tingling is a good sign. It is bits of your nervous system reawakened by the B12 they have been deprived of for so long.
And they are suddenly flooding your brain with signals, signals that before your brain would have known what to do with and damped down, but now it is gently alarming you with them, as it thinks they are something you should be aware of.
Unless they get too uncomfortable, embrace them as proof of the healing process starting, as far as it can to repair all the damage done so far that is not actually irreparable.
And persevere with the treatment; as your brain gets familiar once more with these long-lost signals, it will dial down the tingling/alerting to almost nothing.
Rogergee, my personal experience from the U.S. is I was receiving 1,000 mcg injections every two days once my extremely low B12 and Megaloblastic Anemia, balance and walking issues were diagnosed. When I started I had no neuropathy, tingling or other nerve sensations. Then about two months in I was changed to weekly injections and shortly thereafter I started having tingling on my right side tongue, cheek, fingertips, and foot. I was referred to a neurologist with an appointment in about six weeks and kept on weekly B12 injections. Then before I got to see Neuro I was taken to emergency my entire right side of my body from head, torso to my feet, hand went numb. I don't know if its healing or if I just was not treated aggressively to start? So yes, symptoms can get worse before they get better. My B12 dose was doubled and my numbness is now pretty much all gone with the exception of a very small amount in my right foot and some in my right hand.
It can depend on what caused your PA in the first place. If you have chronic autoimmune gastritis and you have no stomach acid then B12 is only part of the story. If you have low or no acid then you may not be absorbing various vitamins and minerals which are also needed to produce new blood cells and repair the myelin sheath etc. Just take it slowly there’s a lot to learn but it’s worth it in the end.
Im the same i get this tingling sometime it feels like it burning and some days it feels like it going but comes back it worse in the morning im jetting my third injection next week just hope it goes away i have been like this for monthe now and it getting to me pepole say it get worst before it get better i have had a leeter to see a neurology to make an appoitment or should i ask the doctor to give me injection every2 moths instead of 3months
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