Hi,
My bloods came back as having a serum b12 of 73 so my doctor started me on b12 injections. I have had 3 out of 6 so far, but instead of feeling better my symptoms seem to be getting worse. I can't think straight and missed my 4th b12 injection today because I thought it was at a different time to what it was. Is this normal for people with b12 deficiency?
Thank you
Hi hc918
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.
Unfortunately, a severe deficiency may cause damage to brain and nerve cells that is very difficult to reverse and early detection can be critical in preventing permanent neurological damage.
This last paragraph is not meant to scare you but it is the "worst case scenario" if the deficiency is not treated effectively as the P in P.A. is rightly called pernicious...
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 51 years.
I wish you well.
Given hc918’s (and others) experience of feeling worse, at least initially, do you think it wise that my husband starts frequent but low dose SC as opposed to flooding his body with frequent high levels of B12 and then gradually increasing the dose. I have a suspicion that he’s had B12 problems for at least 20 years and wonder whether going from zero to suddenly injecting high doses frequently might be more than his body can cope with. I’ve no doubt he needs large amounts of B12 but might there be any value in approaching this more cautiously?
His Medichecks MMA was over range but we’re awaiting a verdict (via his GP) on what Andrew Klein has to say. We believe he’ll say husband is fine because Klein repeated the MMA and IFab and both were negative. However, if they won’t prescribe for him he’ll SI, watch and wait to see if he begins to feel better
All opinions welcome. Hope you don’t mind hc918. Answers will be relevant to you too
I am sorry Noelnoel - I don't understand what " low dose SC " means as I am not a medically trained person but write only from personal experience,
Hopefully someone else on here will recognise the phrase and be able to help you.
I wish you and your husband well.
So sorry. It always annoys me when I see abbreviations I don’t understand and vowed never to bamboozle others by doing it and here I am having done it
Low dose B12 injections via subcutaneous (SC) needles, as opposed to intramuscular (lM)
I got alot worse before improvements. My first ever serum b12 was 106ng/L( 200-900)
Don't worry about missing one b12 .
They shouod add it back on .
In Hindsight every other day was too intense for me.
A G.p wanted them stopped but just wanted it slowed down.
So i continued with EOD .
I was then supposed to wait 3m to the next one .
I lasted 5 weeks trying alot of b12 sublingual, tablets which did nothing .
I went back on every other day until no more improvements for months .
You level is low.
Time and patience needed .
Healing is not in s linear line.
My symptons were severe but on no othef mefs and to date nothing else found to treat.
Get a blood test in about 3 m to check iron / ferritin. Vit. D ,,Folate.
Often with an absorbtiin problem other vits and minerals can drop.
Hoping you see improvements soon.
Lots of information on thd PAS website and people's first hand experiences on here.
Symptoms vary .
Also while some function normally at a level of say 150 some are ill.
Some sit in range but have b12 deficiency as not reaching cell level.
Do bear in mind alot more research is needed and many Gps have no knowledge of this condition.
i managed 5 1/2 weeks before I got 3 more . . . . . . . I'd agree that 1000ug was too much for me too. . . . . . . Since SI I only use about 450ug every 2nd or 3rd day. . . . . . I have yet to settle on that one. . . . . . Any more is wasted and I dont feel one bit better and in fact got more acme. . . . . . . . .
Clivealive's answer is as usual correct. . . . . . . But anyhow just so you are not alone . . . . . . Your symptoms are not entirely different but perhaps the perception of the symptoms are different . . . . . Some people get more scared than others and react differently. . . . .My First loading doses didnt go as badly as yours but there were all kinds of weird effects . . . . My head felt like I was swimming, almost dizzy but not. . . . . just a very unusual feeling and it happened as best I remember for at least the first 5 injections . . . . . I had 10 injections. . . . Later in time I got to see various doctors as would be the norm to investigate if there were any untoward causes which there wasnt but I got to answer an awful lot of questions . . . . . I got to meet one consultant. . . . . A man who seemed interested in my situation. . . He suggested that given my symptoms over time and the fact I crashed in my 40s with apparently nothing wrong with me apart from exhaustion I most likely had absorption problems for many years. . . . . . . B12 has helped me greatly but I will never return to normal I dont think. . . . . . After the loading doses my head finally settled and if I were ask why? I'd say my head returned to nearer normal than it had been for a long time. . . . . It did feel weird but weird became normal and much nicer and clearer. . . . . Physically I was much better. . . . . I had been reaching a very difficult point with lack of energy and many of th4 other deficiency symptoms. . . . . . After my loading doses it wasnt long until I was heading south again, , ,badly. . . . . Doc gave me one shot per week for 3 weeks , , , , , , It was awful. . . . . . I real roller coaster. . . . . . At that point it was obvious I needed B12 and I did not want to be without it. . . . . . getting very sick over decades is one thing. . . . Turning it on like a light switch is another. . . . . . Make sure you are getting Iron and B9 usually orally . . . . . . . . Follow through on the loading doses and then see how you feel. . . . . No one can advise you what to do after that as it is a minefield caused by too little research . . . . . If you feel better, great. . . . . If you dont go back and see the Doc who prescribed your B12. . . . . . . I had thought I was down another rabbit hole at that time but the additional doses showed me what I needed . . . . . . Good luck
I felt really ill during my loading doses, although I don’t know if that was a coincidence. At the time I thought I had just caught some random illness that was making me worse, but I have seen many similar stories since I have been on the this forum.
In the early days I missed appointments more than once due to brain fog. The nurse joked to me once that it was definitely time for an injection if I couldn’t remember to come!
I am pleased to report I am now mostly fit and well so don’t despair, but you do need to be patient as healing takes time.
Like clivealive says it is about repairing nerves.
The Nervous System is truly fascinating. It lets us feel temperature, a gust of wind, a hug, the ability to read, pick up a pen. It makes our heart beat, our lungs inflate, it contracts our gut, it dilates our pupils. Many people really underestimate it. The Nervous System does love relaxing too, so never feel guilty for doing ‘nothing’.
My symptoms also got worse before improving. I didn't start to notice any difference until after my 2nd 3 monthly injection, even then my painful feet became more painful.It does take time as it starts to repair the damage caused from being deficient before you notice a difference.
B12 INJECTIONS
B12 injections 
B12 injections 
B12 injections
