A while ago a doctor ordered blood tests for my b12. These tests were taken just 2 weeks after I'd had my b12 injection. The resulting level was 571.
23rd October I had another blood test but made sure it was 10 weeks after my last b12 injection.
Doctor said the results showed I was still within range. She sounded quite pleased. I requested and got a printout of blood results. The level of b12 was down to 277. I'm quite shocked that the doctor didnt tell me, and did not think to offer me more regular injections.
I must admit I'm not too up on reading these results, but surely if my level drops that much it warrants more injections.
Written by
barbegrub
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Did you have a series of 6 loading injections and then maintenance injections every 2 months / 3 months ?
Do you have any neurological symptoms ?
Are your symptoms improved by the injections ?
Do your symptoms return before the next injection?
Have you had any other tests- folate, ferritin, vitamin D, thyroid ?
What was your original B12 level ? (please give unit of measurement -ng/L or pmol/L- and range too)
Have you had any tests to discover a cause for your deficiency ( eg Intrinsic Factor antibody test) ?
Sorry for all the questions, but it's hard to picture what is happening. Yes, your levels will gradually drop, but these figures don't look very gradual to me.
The 6 loading injections are to boost your level back up, and the maintenance injections should keep it high. Not just "within range".
These results look as if what is happening is that your B12 is being used up before the next injection is due, or that you never had the loading injections to start with to get your level high enough. So either your maintenance injections are insufficient in frequency to get you through comfortably to the next one or you need to be started again with a loading dose.
If you do not have sufficient B12 left by the time you get the next injection, your levels are likely to gradually get lower, and each successive B12 injection will give you a little bit less in terms of response.
I was put on an injection every 3 months after the loading dose was completed and I felt like I was getting worse and worse. What was happening was that my serum test was showing B12 levels that were above measurable (over 2000 ng/L) - but it wasn't getting to my cells. My MMA was measured, found to be raised and Functional B12 deficiency diagnosed by my GP and confirmed by the lab.
Once you have had your injections started (correctly), there is no point in measuring your B12 again unless like me you are continuing to deteriorate. Otherwise there is little point as your level should be high. It's not in your case, so it's quite lucky that you have been retested. Now your GP needs to find out why you are already at the low end of range after 10 weeks- perhaps she could contact a haematologist ? The guidelines state "every 2-3 months" so if you need injections every two months rather than having to wait for 3 months to elapse, there seems no reason for your GP to refuse while she is waiting for an answer.
Yes I had 6 loading injections then 3monthly. I did manage to get this down to 10 weeks. I have had all blood tests. Symptons do improve for short while and intermittently through the weeks, but not as much as I'd like. I did have PA test. Was negative.
When I ask about 8 weekly injections I'm told b12 is within range.
I do have all I need to self inject. My son suggested to keep up the 10 weekly injection and also self inject after 5 weeks. So I'd be on 5 weekly injections?
Keeping a record, perhaps a daily chart, of symptoms can help you to identify a frequency that would work for you. We are all different, which is why one injection every 3 months cannot possibly be everybody's answer. So focus on the aim being to pre-empt return of symptoms, rather than treating recurring deterioration.
Do you have neurological symptoms ? In that case, NHS treatment should be every other day injections until no more improvement can be gained from this, then every 2 months to keep it there. The B12 level is immaterial and, as you can imagine, it is also immeasurable. It is the nerve repair that is important not the numbers.
Is it worth another go ? Difficult right now when face-to-face appointments impossible and telephone conversations with GP a bit rushed- but a letter might get a considered reply.
Yes, keep your NHS injections - and regular folate, ferritin etc tests - as it should be on record that you are still being treated for B12 deficiency. Whether you decide to self inject to supplement their treatment is a decision only you can make.
Whether to tell your GP that you are self injecting ? Any improvements may well be attributed to your 10-weekly injections if you say nothing, and will reinforce your GP's belief in the treatment frequency offered, which obviously has an impact on subsequent patients. You run the risk of having your NHS injections stopped entirely if you tell the truth. Only you can assess that risk. Easier to do if you have had the same GP throughout - they have seen you at your worst and know how long you have been struggling with this.
It shouldn't be like this and one day it won't be.
Get well and stay well.
PS: I told my GP the day after I'd self injected for the first time, in case she tried to talk me out of it !
As we always say here - treat the symptoms, not the numbers.
If your current treatment regimen is keeping your symptoms at bay then you don't need more frequent injections. If it isn't then you do need them more often.
Have you thought of writing a brief as possible, polite letter to GP that points out the drop in B12 levels and whether or not you get symptoms returning soon after a jab?
Link below has lots of useful suggestions and letter templates for people who want to write to GP.
If you had or still have neurological symptoms, probably worth including a list of all neuro symptoms in any letter especially any that affect your spine.
Neuro symptoms include
tingling
pins and needles
burning sensations
insect crawling sensations (formication)
electric shock sensations
tinnitus
migraine
muscle twitches
eyelid flickering
vertigo
dizziness
clumsiness
dropping things
bumping into things
unusual gait ( unusual way of walking)
proprioception problems
(proprioception is awareness of where the body is in space)
"6 loading injections then 3monthly" is the BNF (British National Formulary) recommended treatment pattern for those without neuro symptoms. In fact the BNF changed a year or so ago to say that for people without neuro symptoms, maintenance jabs could be every 2 to 3 months
For those with neuro symptoms, the recommended treatment pattern in BNF is
a B12 loading injection every other day for as long as symptoms continue to improve then a jab every 2 months
You could ask GP to check their copy of BNF.
GP can find the info in Chapter 9 Section 1.2 of BNF book and you could consider including a copy of BNF info in link below in any letter.
BNF lists recommended treatments for various health conditions in UK.
You could draw GP's attention to the increased risk of permanent neurological damage in patients who are under treated including demyelination of the spinal cord.
Thank you for this info. I'd forgotten about these things. Last letter I wrote I was told it was better to make telephone appointment and talk to a doctor.
I will write and maybe hand it in. Also told me best not to email. They do not check them very often.
I am very cynical after some difficult experiences with GPs.
I think it is vital to have a written record of any concerns you have in case there is a need to make a formal complaint in the future.
Keep copies of any letters/emails sent and any replies received. Perhaps make notes if you have a telephone consultation.
It is hard to prove what is said in a telephone consultation. One way to have some record of what is said is to write a letter to GP in which patient refers to what was said in telephone consultation.
Personally I would prefer to have a written response to a letter as then I would have proof of what the GP/surgery said.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so hopefully harder to ignore. When I wrote letters I included a polite request to file a copy of the letter with my medical notes.
The aim of treatment is to gain clinical improvement I.e. amelioration of symptoms. Unfortunately, some gastroenterologists are pushing the idea that regularising serum B12 levels into the normal interval constitutes successful treatment. This is a misconception, unless your deficiency is due to a poor diet. Not only is the modern laboratory test inaccurate ( a retest of a single blood test can vary by 20%), it does not correlate with patients symptoms. This is why the guidelines don't recommend testing once having injections. It confuses the GPs. , although some well informed doctors recognise that this test fails to detect 7 out of 10 sufferers. Specialists in B12 deficiency argue that you have to be off injections for 6 months to get a new baseline reading. This is neither necessary or desirable. They don't stop insulin injections because they are effective on the short term and wait for diabetic patients to get ill before reinstating them.
My husband tells me that those few studies that have attempted to record clinical improvement alongside regularisation of serum B12 levels failed to achieve clinical improvement in between 54 and 80% of patients. Hardly a successful treatment protocol. These are the same clinicians that argue oral supplements are equally effective as injections. Sadly in most cases they are not.
My pleasure. Good luck with your attempt to get more frequent injections. It is your symptoms that matter. The serum level is declining rapidly. Why should you have to suffer because the frequency is insufficient. A level within a laboratory normal interval does not mean that you no longer have a problem. Many patients require a high serum level to feel well.
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