Since I started b12 supplements and injections all of my symptoms have been getting worse and even new symptoms appearing.
does getting worse mean that i will likely recover once after keeping the injections and cofactors going?
for reference i have been injecting/supplementing everyday for 12 months.
my symptoms are tingling, burning sensations ,numbness, electric shook , headache , brain fog, memory loss, grey hair, hyperpigmentation, adhd
any answers would be appreciated
Do you think thd frequency of b12 jections enough ?
Has everything else been ruled out?
It depends how long your b12 deficiency went on for before treatment.
In my case i got alot worse before better .
The improvements were very slow .
One step forward 2 back .
I keep a diary still and have come a long way in 6 years
Still improving.
I'm left with s vestibular disturbance which does give headaches..
Tinnitus .
Reading still s problem as text disappears ftom the right or fades as I type .
I'm now known for typos 🙃
Alot has gone though.
A long list .
I'm on o medications.
Nothing 4lse found to treat.
Just B12 injections and other vits and minerals .
So yes it can get better from where you are now.
I have been deficient for most of my life so probably 10+ years. I inject every single day and also take 10mg sublingual every single day. Do you think i should be feeling like this for more than 12 months until i become better?
It took me a few years
You might find this an interesting read ..........
perniciousanemia.org/b12/in...
Good article. But does make me question why I’m going backwards instead of noticing improvements. I will have been on Hydroxocobalamin EOD for five months next week and the last three weeks have been a nightmare. On some days I hardly got out of bed. I find suddenly the sweats start, I feel weak, nauseous and shaky again. This article says you should start to improve after 3 months.
I didn't. Hang on in there
Because everyone's deficiency is different and everyone had the B12 deficiency (or other deficiencies) for varied amounts of time, there is no single number that you can rely on to say, after X weeks or months, you will begin to feel better.
I had read that early treatment decline could last 2-3 months but I think only about 5 months did I feel things were turning fully for the better. The few months after I began treatment were 10x worse than anything during the deficiency period itself.
Some people feel better after the first injection but many see this period of decline that can takes months to fully turn around, I think I've read as much as 7 months here.
It's a very, shall we say, unusual, healing process.
That said, if you've been injecting EOD for 5 months and you've had a dramatic downturn for the worse only in the last 3 weeks, that doesn't sound as much like a B12 issue to me.
My timeline has been similar, Technoid. The first 3/4 months were awful, I described it as my body thinking every morning "What weird and crazy stuff shall I have today??" Even after that (I'm 10 months in) I continue to have new and changing symptoms. We all come at this from different starting points, then treat and heal so differently. It's a challenge!
What they say and what actually takes place is two different things. It all depends on how long you have been deficient and what damage has occurred. If you have myelin sheaf damage recovery will take longer. You did improve in the beginning which makes me wonder if you need more frequent injections.
I have been injecting 4 and a half years and still suffering the burning stinging sensations ! Some call it reversing out as the nerves heal. Over time hopefully the sting, burning ect will ease off if not subside completely. I am having to inject every day.
I wake up like a boiled lobster ( but I do have thyroid issues ) so not sure what is doing what. Keep reading , keep learning and do what you feel is best for you.
You could also have low blood sugar........ Why do I suddenly feel weak and shaky and sweaty?
Most people will have some warning that their blood glucose levels are too low, which gives them time to correct them. Symptoms usually occur when blood sugar levels fall below four millimoles (mmol) per litre. Typical early warning signs are feeling hungry, trembling or shakiness, and sweating.
Google...... Hypoglycaemia 😘
Have you been injecting daily for 4 and a half year and still no improvement??. That was very discouraging to hear. Have you tried to see if it’s something else that is causing the neurological problems?
I have a few autoimmune conditions so its hard to say what is doing what ! Some symptoms have improved with injections where as other's have stayed persistent. I have a scoliosis of my spine so I assume mine is due to trapped nerves.
Try not to be discouraged, we read many posts where people have recovered. It all depends on how long we are left untreated and the amount of damage that has occurred. None of us can go by the book we are all different so give it time. 😘
I presume you know that your folate levels are within range? You should be eating a lot of dark green vegetables or taking folic acid supliments. French beans, runner beans, broccoli. Brussel sprouts, curly kale etc.
Yes folate at top of range. I do take 5mg folic a couple of times a week to keep levels up. There is also a small amount in my B complex. Also eat green veg.
Hi,
Have you got recent results for folate, iron and Vitamin D?
Many here report these deficiencies as well as B12.
Yes i was not deficient in any of those, i also supplement for iron folate and vitamin d
Hi. I didn’t have worsening of symptoms on starting on B12 injections but many report doing so. However, 3 years in to self-injecting I experienced a marked dip. I eventually saw a private consultant and after tests was prescribed folate and advised to take B12/K2 Better You spray and Gentle Iron. These have helped greatly and my co-factors are now in range.
Interestingly both this consultant and Dr Norris talking to B12d Support Group advised against daily self-injection and I changed back to eod. If I understood correctly they gave different reasons - but I’m not knowledgeable enough to explain their reasoning (vaguely- one, the interplay with co-factors and the other that the body can only absorb so much at a time).
I wish you well on your B12 journey. It’s very complex and personal and can be difficult to find the right regime.
That's interesting. I recently had a few weeks of switching from EOD to daily injections and felt much better but the specialist advised me to only do this for a short time. I don't really understand the reason since I felt much better. I never considered it could be to do with co factor absorption.
Could you please DM me your specialist's details?
it took me a year and a half to get rid of most of my symptoms. I was also on daily. I kept getting new ones and then they would pass. I’m now almost 2 years into it and have finally been able to reduce my injections. It gets better….. it just takes a long time. Keep checking your other levels. I test every 4 months for iron, vitamin d, ferritin, thyroid etc
I'm 2 years into my diagnosis and have injected alternate days through most of it. On a couple of occasions my someone have back tracked. The first time was early on and i had a course of comic acid and got back on track. The second time was around a year in. I started taking vitamin B complex daily and got back on track. In the last couple of months I've had a lot going on and forgot the B complex. A couple of weeks ago, my debt started ticking again and up into my legs. I restarted the B complex and all settled again within a couple of days. I now take the B complex on the days I inject (3 days/week).I also take magnesium and a basic multivitamin every day. I used to try to take daily iron, but struggled to tolerate it and was recently told by my Haematologist that my iron levels are replete and not to take anymore.
The moral of this story is that some cofactors (iron, folate, pyridoxine) are essential for the B12 to work properly, but some (especially iron) need particular respect and should only be done when guided by blood tests. Pyridoxine doses of 50mg or more per day for more than 6 months can also cause neuropathy, so make sure whatever you take is less than that (if you choose to take some B complex).
I hope you find a solution for your down turn in symptoms. Remember, not everything is related to b12 deficiency, so if taking some co-factors doesn't work, see your gGP.
I can only suggest that you consider your iron levels by looking at your ferritin count. I injected EOD for over a year with positive but limited results until I realised I had ferritin deficiency without anaemia. After 6 months of haem iron I am much better.
Are the sublinguals you are taking methyl? If so, try not taking them for a couple of days and see how you feel. They made me feel horrible. I'll never touch any type of methyl supplement again.
maybe you can get a cellular nutritional test and see what’s missing
I've had a similar journey but not as long. On EOD with co-factors and got better for 2 months, then tingling all over and brain fog came back and still present daily now for nearly 3 months. The pins&needles and tingling have actually been the worst for the past 3 weeks.
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