Im new here and just looking for some advice please. Back last October I went for some bloods as I was feeling out of sorts and was pregnant at the time. The results showed that i had low levels of b12 and iron. I was prescribed iron tablets and had to have 6 loading injections of B12 to begin with and then an injection every 3 months thereafter. The doctor told me that i had Pernicious Anemia and that i would need injections for the rest of my life as my body is unable to absorb b12 properly, and that this wasn't related to pregnancy. (I did start to feel better after having them) I have since had my baby and am no longer taking iron tablets as my levels are back up and my last B12 injection was in February. I was meant to have one in May but we moved address and i had to register with a new surgery. Anyway i informed my new surgery that I am overdue my B12 injection and am starting to feel out of sorts again. (Shakiness, dizzy, numbness, pins and needles, achy muscles and fatugue). They said that they would carry out bloods to check what my level was before giving the injection. I had my results yesterday and my b12 level was normal! The doctor said that i was not deficiant and in fact i do not have Pernicious Anemia as the test for intrinsic factor was negative! This was a shock as a previous doctor said that i had it. I told the doctor this and she said she would check what my previous levels were when ibwas tested at my previous surgery. Anyway to cut a long story short, i had a phonecall today off the receptionist who informed me that the doctor said i would need to continue having b12 injections for the next few months, as my level last year was 91 which is low. I am confused though as my most recent bloods showed that my b12 was normal so not sure why they want me to continue based on an old reading, does anyone know why? I am happy as im hoping these odd feelings will go away after the injections, but im also worried why i am having these symptoms when my level was normal, so im worried if it as caused by something else and it is giving me major anxiety. I plan on making an appointment wit the doctor to ask these questions but i have to wait 2 weeks. In the mean time does anyone know why they have advised me to continue the b12 if my recent level was normal and i do not actually have Pernicious Aneamia? Also is it possible to experience symptoms even though i dont have a defiancy based on recent result? I was obviously low in b12 last year and im not sure why, i am not a vegaterian and rat well. Thank you and apologies for the long post. I am worried that there may be something else going on but dont seem to be getting anywhere with the doctors!
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Almost certainly your doctor realised they were wrong to stop your injections after your last appointment. You do have a deficiency and you almost certainly do have PA.
Your B12 was normal this time because you had been having the injections. The B12 was still hanging around in your body. But it wouldn't have stayed normal. It would have continued to drop and make you ill again. Indeed, it sounds like this has already happened.
The doctor was wrong to say that you do not have PA because of the negative Intrinsic Factor result. Half of people with PA test negative.
Your pins and needles are a sign of nerve damage. This means that you should be getting injections every 2 months, not every three months. Ask your doctor to check the entry in the BNF for neurological involvement.
Print this out - onlinelibrary.wiley.com/doi... - and give it a good read through. It's written by the biggest brains in british blood. Highlight the bits that say
the finding of a negative IFAB assay does not therefore rule out pernicious anaemia
No further testing for cobalamin levels is required.
patients negative for IFAB, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response
Thank you for this information. I will print this out and have a good read through it. I was unaware that you could still have PA even if you had a negative test result. I am not sure what my recent b12 level is but it is something i will ask when i go for my injection later on.
Do you know what the normal ranges should be? In October it was 91 and i am assuming this is very low? Clearly because of the injections i had, my level has gone back up, but i was unaware you could still suffer symptoms with a 'normal' reading. Im hoping i will feel better after the injection, i have been thinking the worst after googling all my symptoms and am still anxious about it, which isn't good when I have a young baby to care for. I guess i need to be asking for further tests to confirm a PA diagnosis, despite the levels being in the normal range? Also i decided to have my an active b12 test via medichecks, i haven't recieved my result yet but assuming it comes back ok, this still does not mean i don't have PA or am not deficiant? Thanks again.
Normal ranges are variable. Different assay methods have different ranges. And they use different units. But your value of 91 is very low.
Once you start injecting B12 there is little point in in having a B12 test, serum or 'active' as the results will be high. But it is still possible to have the symptoms. Many of us on here have symptoms that don't go away even with very high levels.
You don't need to have any more tests to confirm PA. As the BCSH document says -
Lifelong therapy should be continued in the presence of an objective clinical response
If the B12 makes you feel better then you need injections for life. In the absence of any other possible cause for a deficiency you almost certainly have PA. But there is no definitive 'gold standard' test for it.
Your anxiety could be another symptom of your deficiency. Being short of B12 can have many sneaky effects. Anxiety, depression, irritability, paranoia - all are possible.
I've just read JanD236 's responses. Agree with them all.
Yes it all makes sense and now i understand why it would be higher if i had previous B12 injections, just didnt realise you could still get symptoms. I was ok for a while even though my b12 was 2 months overdue! My symptoms started about 2 weeks ago so the levels must have dropped enough for me to feel unwell. Some days i don't feel too bad and then other days i am ok for a while, Is that normal?
Actually, even though levels in the blood might be high even, the levels at tissue level might not be. I had symptoms, tested deficient, had loading doses, then only a slight decrease in symptoms while my serum B12 got sky high. But it was only after I re-started loading doses again and continuing them for a longer time, that I am seeing results. So: my serum B12 is over the roof, but for me it apparently takes high levels in the blood to restore what is needed on tissue level. I've read a lot about B12 deficiency since and especially for neurological symptoms the recovery takes a (much) longer period of frequent injections.
Also, I am familiar with the 'flares' you describe. From what I've read here, they are common. Your B12 of 91 of last year was seriously low, your symptoms are most probably B12-related. And you have to treat based on symptoms now, rather than serum levels (because once you've started injecting all these levels say are basically THAT you are injecting...) Keep a journal of symptoms, and see what injections do over a longer period of time.
Considering the flares and symptoms, it might be a good idea to ask your doctor to test for other deficiencies as well (especially vitamin D, folic acid, iron/ferritin) and possibly your thyroid function (if he hasn't done so already).
Thanks. I am going back for more bloods next week to test for vitamin D and calcium. My thyroid and iron i was told were both fine. I will keep a log of symptoms to see what the injections do. Unfortunately they won't restart loading doses for me as i have already asked. I had loading doses back on October when b12 was very low, then was put on 3 monthly injections. I missed May's injection though which has probably set me back and why i feel like i do. My next one now is in October but depending on how i feel as the weeks go on, i may go back and ask for it a it a bit sooner. Fingers crossed
Hi, I don't mean to seem to contradict you but should this not be every other day until no further improvement and then every 2 months for neurological damage fbirder ?
I wonderrd this so I did ask if i needed the loading injections again as this injection is now 2 months overdue. I was told i didn't need to have loading injections again but just to have injections every 3 months. Hopefully i see improvement over the next few days/weeks. The nurse said it is likely to take a week or two before i notice improvements. I have read some people feel an instant ease with thier symptoms, is that even possible? Maybe it is a placebo effect
The loading doses are to get your levels up from rock bottom. Not just in the blood, but in all the places where the body stores B12. Your levels are still quite a bit higher than they were before so, although extra loading doses would be beneficial, you'll just take a bit longer to recover without them.
Yes, some people report instant relief. But suggesting it is a placebo effect is frowned upon.
Of course by all means ask for your recent B12 test result, however, do be aware that this will be a fairly meaningless number as you have had B12 injections in the recent past. Guidelines say that once injections have started it is not necessary to have B12 levels tested again. Active B12 results are likewise affected by an injection in the recent past so the result of your active test might not be particularly helpful.
The normal range will depend upon which units have been used to measure B12 and which lab has carried out the test. The range is always provided with the test result for comparison purposes. However, whatever the range, as you say 91 does seem very low for serum B12.
Once B12 injections have started, it is unlikely that a person with PA will be symptom free with B12 levels falling within the normal range. Many of us seem to need very high levels of serum B12 to feel symptom free. For example, I am mostly symptom free and my B12 levels were over 2,000 (the cut off point for testing) when my GP inadvertently tested me when carrying out other tests.
As you’re not vegan and assuming you eat meat, fish and dairy the most likely explanation for your B12 deficiency is PA. The only definite test for PA is a positive result for intrinsic factor antibodies. You’ve had this test but the fact that you had a negative result does not mean you do not have PA as the test is unreliable and gives a negative result in approximately 50% of people with PA.
Thanks. I just had my injection and asked the nurse what my recent b12 level was and was told it was 515 (was told anything under 160 was low). As my previous result was very low at 91 i would need them every 3 months. She also said that once they start injections they don't normally re-test. I was told to speak to the doctor about PA as she was not sure if I have it. It does appear I may have it though, but I have been told different things by different doctors and it would be nice to know for sure so i can stop worrying! As if im not confused already with this brain fog! Im hoping the injection starts to kick in and i feel better. My next injection is in 12 weeks, I did ask about having them every 2 months but apparantly this is not needed....
Whether you have PA or are otherwise deficient in B12 (for non-dietary reasons) shouldn’t matter as the treatment is the same.
If you find that your symptoms return before your next injection in 3 months you should push for 2 monthly injections as this is a clear indication that more frequent injections are needed. Guidelines allow injections to be given every 2 or 3 months.
Ok thank you i will definately push for this if i have to. I can't remember how long it took for me to start feeling better when i had the injections whilst pregnant. Does it usually take a few days/weeks to notice improvements? I have bought an oral b12 spray as i have heard good reviews, i know it won't be as good as injections amd isn't a substitute, but thought it may help inbetween them.
It’s not possible to say how long it will take you to start feeling better unfortunately. Weeks, months, longer. We’re all different in how deficient we were when we started, how frequent our injections were given, and how our body responds.
I started feeling better only very gradually but didn’t feel as well as I do now until I got my injection frequency right. For me this means weekly injections, however, this gives me an active sporting life.
As I understand it, the oral B12 spray is unlikely to help if you do have an absorption problem. One or two on this forum I’ve read say it helps but I think the majority say it does nothing for them, myself included.
6 weeks in waiting for 3 monthly injections I got very ill . I after a fight restarted loading injections and had the best improvement to date. I thank those on this forum that advised me to do so.
As they have done your b12 test you now know that you need B12 levels to be much higher to stay well.
Sounds like your initial loading dose was done in time before too much damage occurred.
Now you've had this shock of what happens to you if injections stop I would monitor your symptoms. If you need them more frequently than 3 monthly push for them .
Did your previous doctor give you a reason why s/he thought you had Pernicious Anaemia ? Your levels were initially very low, and dietary reasons being ruled out, this could have been an educated guess.
More crucially, why would your new doctor NOT think this was PA ? What else does she imagine could have made your B12 drop this low ?
Intrinsic Factor test is unreliable: likely to give a false negative 40-60% of the time, a positive result however is right 95 +% of the time. So if you get a "yes", it's a fairly indisputable yes- even if it takes 2 or 3 tests to get there ! Just wondering if this was ever tested the first time and got a positive - could be why your new doctor appears to be backtracking (?)
My old doctor never said why he thought it was PA. I had never heard of it before he told me I had it, so at the time i had assumed they had carried out tests to confirm it. I only found out from my new doctor by her lookong through my notes, that they he had not actually carried out the Intrinsic Factor test so therefore it must have been an educated guess from him due to such a low level. My new doctor said she did carry out the Intrinsic factor test and it came back negative and therefore i did not have PA, and because my B12 levels were fine, i was therefore not deficiant. However a day later i had a phonecall to say that because my initial B12 test with the old surgery was very low I would need to continue with the B12 injections. She must have realised that i still needed them by looking through my old notes with the previous surgery. Why initially she said i did not need them im not sure... This is why i was so confused as i have been told two different things by two different doctors! From the information i have recieved on here, it is more clear to me that it was probably pointless the new doctor re-testing B12 as it would have been a normal result because of my previous injections. I now have been educated that just because the intrinsic factor was negative does not rule out PA. I am due to see my doctor again in 2 weeks so i will be sure to clarify everything. Surely for them to now inform me that I need to carry on with the B12 it must be because they realise i need them? But they have not confirmed if it is because of PA as result came back negative. Im sure they must know the result isn't always accurate?
I no longer assume that GPs or specialists (even those that you would think deal with patients with B12 deficiency on a regular basis) know much about B12 deficiency. In fact, a neurologist I saw once told me himself that he knew nothing about B12 deficiency. Honest at least.
It sounds as if your first GP was listening to you, and trusting himself to diagnose PA based mainly on your very low B12 level. What else would it be ? Most people go through years of elimination tests etc. to eventually get to a PA diagnosis. Must cost NHS a fortune.
My GP did restart my loading dose: 2 injections a week 7 months after my B12 deficiency was discovered, because I was not responding to treatment : 1 injection every 3 months after 6 loading doses in a month. My serum B12 level was then found to be over 2000 ng/L , but methylmalonic acid (MMA) raised- which would normally indicate either renal problem or a B12 deficiency. Since she'd also had liver tests done, she diagnosed Functional B12 deficiency which was confirmed by the laboratory used for the MMA test.
When I started to deteriorate after 6 months of 2 injections a week, she sent me to specialists as she was unsure what else to do- "beyond primary care" -and reduced injections to 1 a month, which of course made me a whole lot worse. I felt quite abandoned at this point, although in retrospect I can see how worried she must have been about this whole course of treatment. Not a frequency that her, the surgery or any of the nurses were accustomed to.
The only way I can get a frequency that gives gradual improvement is by self-injecting every other day.
I don't think my story is a common one, in that my GP was more willing to try and work out a frequency that worked for me for a while at least, despite reservations. I also don't think most people have such a slow improvement rate or need quite so much B12 to get there. Without a supportive GP, and without the help and care given here, I'm quite sure I would've given up trying. So much pushing and arguing your case with people unused to listening can be very disheartening, and on a bad day symptom-wise, impossible.
It seems that your new GP may well have now taken her lead from your previous GP, and hopefully will give you the treatment you need (without any more pointless testing) at the frequency your body requires. With a little help from you ! Good luck.
It does appear that not much is known about it yet B12 deficiancy appears to be a relatively common occurance. I have learnt more through joining this forum than what i have been told by the doctors. You mention MMA levels, what is this? Would this have already been tested when thrle first doctor tested for B12 deficiancy? Im glad you have found a frequency of injections that suits you and that they are keeping you well. Its been 2 days post injection and i feel like i have a little more energy than the past couple of weeks - This is good, especially as I have a 5 month old baby. Not so much of an improvement yet in my other symptoms but still early days. My teeth have suddenly started to ache, not sure if that is related to b12 though!
I used to get teeth/face/gum/upper jaw ache when I was deficient: could never tell exactly which. I don't get this now so I'm taking this as being a B12 deficiency sign.
I hope things improve for you.
If you feel worse/ don't improve as much as you thought you would, go back to GP and say so, won't you ?
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Confused & could do with some advice please...
