I have read a passing comment in some articles on pernicious anaemia that some patients get worse, only for a while, when treatment is started. It seems to be a response to increased folic acid and some of the effects caused by it.
Is it common to get worse at first?
Hi Cetus are you in the UK?
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
Where are you in your treatment?
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 47 years.
I wish you well.
Some people see a pattern of recurring symptoms that are new when they start B12 injections. The confusing thing is that these new symptoms are very similar to the ones they had from the deficiency.
When I first started on injections, I could get very aggressive and argumentative to the point of going beyond into unproductive work and bad decision making. I described it as the “roller coaster ride” after each injection.
Pain of all sorts, excessive hunger, headaches, nausea, etc. show up and a lot of people describe it as being allergic to B12 or having a bad reaction to B12.
These new symptoms are quite often due to nerve repair or from the flood of metabolic byproducts that the cells of the body generate once they get B12 and kick into high gear churning off the backlog of stuff in the folate and methionine loops.
The larger the backlog, the more severe the symptoms. Or in other words, the greater the deficiency before the injection, the stronger the reaction after the injection. The severity of the reaction also is due to the type of B12 with adenosyl being most reactive, then methyl, hydroxo and cyano.
Nerve repair is especially tricky because the repair causes the signals to be faster and stronger along the nerve. I’ve not seen anything written about “faster” so don’t quote me in that. These stronger signals are interpreted by the brain as pain, hunger etc but it is an illusion, albeit appearing to be very real.
Muscular pain can be dealt with by slow gentle range of motion exercises like tai chi or for me just getting going and using the muscles that the nerves drive. The brain figures out that there really is no pain and recalibrates to the stronger signals and the pain evaporates.
It helps to tell yourself that the pain is “good” and an “illusion” and the endorphins (?) help the recalibration go faster. Worrying and stressing out about increased pain on the other hand seems to make the pain worse and prevents the brain from recalibrating.
Tooth pain is something completely different as, although the initial signals may be small, the brain can’t figure out how to recalibrate. Pain medication was the only recourse for me.
I’ve found that keeping a logbook or diary and recording daily severity scores for each symptom has helped sort out the symptoms caused by the deficiency from those caused by the B12 treatment.
Once a person can anticipate the good symptoms, some control is restored and stress goes away.
The severity of the symptoms after injections can be use as a measure of the degree of deficiency before the injection and leads one to argue for more frequent injections. Doctor, unfortunately seem to treat these requests as hypochondria or as an addiction to B12 and frequently fob off patients as nutters.
I’ve had success twice, once in the UK, and once in the USA, with presenting my list of symptoms and having the frank discussion about needing, or at least wanting to try, more frequent injections and self injections.
My GP requires me to provide feedback ASAP if things change under my self monitoring regime or at least yearly for an annual physical.
Right now we are debating the high LDL cholesterol levels as needing statins or needing more frequent injections from the weekly cyano that I’m currently on, (plus 20000 mcg methyl sublinguals daily to just get by) so this sage never seem to come to a satisfactory conclusion.
Hi Cetus . You mention folic acid which I can't comment on as I wasn't deficient in that, but for B12 deficiency my symptoms did initially worsen once starting the B12 injections. It's been 2.5 months since starting the injections and it's only been the past week or so of experiencing some stable improvements. Initially after starting the injections a couple of symptoms immediately improved, however quite a few new symptoms were experienced, hence feeling worse after starting the injections. The improvement wasn't a linear line either, some days I was feeling alright and hopeful and other days were awful. All the best. 
As clivealive says, some symptoms can appear to get worse as the body adapts to having enough B12.
It has nothing to do with changes in folate levels. Starting B12 supplementation cannot increase folate levels. It might, in some cases where the B12 deficiency was very severe, cause folate levels to drop from very high back to normal. That's because low B12 can cause what's known as the 'folate trap'.
It also has nothing to do with a 'flood of metabolic byproducts'. How a reduction in unwanted chemicals like homocysteine is supposed to cause bad symptoms is totally beyond my comprehension.
fbirder Isn't the standard protocol for initial treatment of Pernicious Anemia to take B12 injections, folic acid orally and perhaps iron orally?
Presumably that would mean certain pathways in the folate cycle become much more active.
Could that be where things get worse if the increased activity upsets the overall balance?
No. The standard protocol for PA (or any B12 deficiency) is to rectify the B12 deficiency. Folate and iron only need to be supplemented if the person with PA also suffers from a folate or iron deficiency. Whilst these deficiencies are more likely in somebody with PA they are not usual.
Taking more folate does not make any pathways more active.
I did. Some symptoms went quite quickey. Some got worse before a little better. Some come and go. I've found at present 3 steps forward and 2 back. So still moving forward but at a much slower pace than expected.
I am almost 2 months into shots and it's been a roller coaster. I feel like I am starting to stabilize now, though I still have some bad or mediocre days. I still have glossitis, some days of fatigue, blurred vision and some muscle twitching and fogginess. At first, I would have 1 day of mania, 3-4 days of feeling good and 2 days of crushing fatigue after each weekly shot. My vertigo went nuts and my balance was insanely bad. I could count on being in bed 1-2 days a week right before it was time for my next shot. After about 6 weeks, I went up to 2 shots per week and added methylfolate, D3 and K2 supplements. Right around that time, I went mountain biking and was shocked at having incredible balance and coordination (so much so that I realized it had been about 5 years since I'd felt that good on a bike). I'm hoping the roller coaster is near its end. In any case, at least the ups and downs are less pronounced now.
Getting worse...
Things are getting worse
Aches and Pains Getting Worse - Low B12
Feeling worse after B12 shots
Constant thoughts about death after diagnosis or starting treatment?
