Hope someone can help ease my anxiety!! I was diagnosed with low B12 (193) in May, although was told by doctor I was only just slightly deficient. Symptoms were pain in my calves & thighs, twitching, pins & needles, sore feet, tremors and anxiety.
Shortly after I began a months treatment of cyanocobalimin 3 times a day orally and after this my B12 rose to 418.
As I was still experiencing symptoms I was put on another 2 months of the same treatment but after doing some research, especially on this forum I found out that anyone presenting with neurological symptoms should be on injections.
So after a phone call with my doctor (about 1/2hr ago) having asked to be put on injections I have just been told that my symptoms are not related to B12 deficiency as that now my B12 is back to within a normal range I should be feeling better now, she was quite frank about it and I don’t think she liked me telling her that I’d done research on this either.
My anxiety is through the roof as I am waiting on an appointment with neurologist and I can’t help freaking out that I’ll be told something bad like I’ve got MND or something like that.
Has anyone else experienced this??
Sorry for long post!! Just need some reassurance
Thanks
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CBD123
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I'm not sure who said that anybody with neurological symptoms should be given B12 injections. But it's wrong.
People with neurological symptoms caused by a non-dietary B12 deficiency should be given B12 injections.
Your B12 has doubled after a month's worth of oral supplements, indicating that you do not have an absorption problem.
Nerve damage caused by a B12 deficiency can take quite a while to be repaired, so your doctor may be premature in stating that your symptoms are not caused by a lack of B12.
Keep taking the supplements up to your neurology consultation.
Thanks for the reply fbirder, sorry I can’t remember exactly where I read it as I’ve read so much recently but maybe I have got it wrong and it did just mean people with absorption problems.
I think I really just want to know is where my b12 result of 197 low enough to cause all these problems?? And is it possible to still be experiencing these symptoms after 3 months of taking supplements??
Symptoms of B12 deficiency can persist longer than three months...especially neurological symptoms...especially when treated with low dose oral supplements.
I note that CBD123 points to some improvement...so it’s possible that significantly more improvement could be had if treated with injections - with the possibility of a change to oral supplements once full neurological repair had been effected.
You’re not sounding quite like yourself fbirder - do you need a jab? 😉🙂
BSH Cobalamin and Folate Guidelines mentions that BNF says those with cobalamin (B12) deficiency with neurological symptoms should receive IM (intramuscular) injections of B12 every other day for as long as symptoms continue to improve.
As far as I can see it does not distinguish between diet and other causes of B12 deficiency if neurological symptoms are present.
There is plenty of conflicting guidelines and indeed treatment.
I thought 'they'd wouldnt wait to see if tablets worked if neurological symptoms whatever the cause. Then if dietary would then uses tablets as a maintenance.
I'm sure thars what the Gp intended for me as she thinks dietary. (Which it clearly isnt)
I've seen that work for a friend that by proxy was a vegan for a short while which caused her b12 to plummet as trying some sort of diet. She had injections stopped and has been fine on tablets and a mixed diet again. ...idiot . Even knowing what has happened to me. Some think they are invincible (it's okay to call her a idiot as known her for 40 years)
Hi Fbirder. According to this publication (The Many Faces of Cobalamin: ncbi.nlm.nih.gov/pmc/articl... any individual presenting with neurological symptoms due to b12 deficiency (dietary/non-dietary) requires intermittent injections of 1000 mcg, even if blood serum/MMA/Hemocysteine levels are normal.
CBD123 has been b-12 deficiente, but still experiences neurological symptoms even if b12 serum is higher. So whilst neurological symptoms persist, it’s recommended to proceed with injections.
Pernicious anaemia and other macrocytic anaemias with neurological involvement
By intramuscular injection For Adult
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.
Thats not to say that oral B12 may not be effective of course if it is absorbed. My personal experience is that it needs very high serum B12 to reverse neurological symptoms so IM may well be the best way.
BMJ best practice and NICE guidelines are that symptoms are key to diagnosis and treatment. The B12 serum test isn't the only story. If you read books or websites on the subject - Could it B12? or b12d.org they will help you identify what's going on.
CBD123. I'm sorry you're having such a rough time and feeling so unwell and worried.
You’re right. In the U.K. the standard treatment for those with neurological symptoms is B12 injections. The aim is to get levels up quickly so that repair to the nerves can begin. For those who do not have absorption problems it is possible to change to oral supplements once neurological and other symptoms have abated.
Where the deficiency has been present for some time, repair and return to full health can take some time...and injections should be continued until neurological symptoms have resolved.
Here's an extract from the BSH Treatment Guidelines:
'Current clinical practice within the UK is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, medicinescomplete.com/mc/bn...). Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate days until there is no further improvement.'
It's quite clear in the above that where neurological,involvement is involved, the injections should be given via 6 x loading doses on alternate days and then continued every other day until no further improvement.
And here's a link to the full treatment guidelines. The extract above is in the first paragraph contained in the section entitled 'Treatment of Cobalmain Deficeincy' (sorry, can't give you the page number because there is isn't one).
Perhaps you could highlight the relevant paragraph and take along to discuss with your GP.
Whilst the oral supplements are increasing your serum B12 levels and it's likely you do not have an absorption problem, B12 levels are raised very very slowly via oral treatment...and this is not initially receommended for those with neurological problems.
It is possible to still be suffering symptoms three months after commencing B12 oral treatment, especially neurological symptoms, which can often take many months of treatment to resolve. Recover would progress more quickly if your GP treated you with B12 injections.
I know that you're understandably worried about the neurological symptoms and have been thinking about MND but...the answer is usually the most obvious one - your proven B12 deficiency - which is known to cause the symptoms you have. Your GP has done the right thing referring you to a neurologist - this is the usual course of action for those with neurological symptoms and will hopefully rule out other (quite rare) possibilities and put your mind at rest.
It’s also worth noting that anxiety can also be a symptom of B12 deficiency so you may we’ll find that your anxiety levels fall as treatment commences - especially if you can access B12 injections and raise your B12 levels more quickly.
So...worth addressing again with your GP. If you are only able to access them via telephone, it might be worth highlighting the guidelines and dropping them off at the surgery with a letter requesting treatment with B12 injections (stress that you are still having neurological symptoms), asking that your GP read the highlight portion (and hopefully the whole document) prior to your consultation.
Very best of luck...be interested to hear how you get one 👍
Thank you Foggyme, you have certainly put my mind at ease.
I will have a look at the link you’ve sent and pass this onto my GP, from what I’ve read some GP’s aren’t as clued up as they should be on this matter. I’m just so thankful for this forum.
Thanks again I will certainly let you know how I get on
And if they think you’re okay because your levels have risen slightly on the oral supplements...Treatment Alert saying injections should be commenced immediately in the presence of neurological symptoms...even if B12 levels are within 'normal' limits... (I.e. when B12 levels test 'normal' but neurotically symptoms are present)...
archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
"Whilst the oral supplements are increasing your serum B12 levels and it's likely you do not have an absorption problem, B12 levels are raised very very slowly via oral treatment"
They more than doubled after one month's oral treatment. Another two months would have seen them over 1000 at that rate.
I have no wish to get into a lengthy debate about the pros and cons of oral B12 treatment v injections, B12 levels being meaningless after supplements and no indicator as to the efficacy of treatment...and absorption v non-absorption issues (you know all that).
The bottom line is that, according to all the guidelines, where neurological symptoms are present, treatment should be with B12 injections (again, not going to debate - you know what the arguments are).
CBD123 was not afforded this treatment and is still suffering neurological symptoms. So it’s appropriate to advise that intensive treatment with B12 injections should be commenced...and continued until no further (as per BNF, BSH guidelines et al).
Nobody has argued more strongly in the forum against oral treatment for B12 deficiency than you have, so I'm finding your current position a little mystifying and contrary to your oft expressed opinions. So...hmm 🤷♀️.
"The bottom line is that, according to all the guidelines, where neurological symptoms are present, treatment should be with B12 injections (again, not going to debate - you know what the arguments are)."
But does that apply to those with a dietary deficiency?
In which case, according to the guidelines, where neurological symptoms are not present, treatment should be with B12 injections. So all people with a dietary deficiency should also have injections.
So everybody with a deficiency, dietary or not, should have injections?
When neurological symptoms are present treatment is with injections (to get levels up quickly and effect swift neurological repair). Whatever the cause of the deficiency - which is not always easy to determine. The deficiency needs to be reversed quickly to prevent irreversible neurological damage and potential progression to subacute degeneration of the spinal cord.
If dietary cause is suspected and there are no neurological symptoms, then oral supplement are usually tired first. So not all with dietary deficiency would need injections - just those who present with neurological symptoms. And unfortunately, too many GP's assume that a B12 deficiency is dietary, without understanding or investigating the many other potential causes. So...
If symptoms initially believed to be caused by dietary deficiency are not relieved by oral supplements, then treatment should be changed to injections (even if B12 levels appear to rise, which in itself is not indicative of efficacy of treatment).
If therapeutic trial of B12 injections brings no improvements, then the cause of symptoms is unlikely B12 deficiency.
Wouldn't it be wonderful if there was a gold standard test to prove B12 deficiency...and a world full of GP's who understood it 🙂.
I'm having a wry chuckle here fbirder because I suspect you know the answer to that. But here goes...
No - vegans do not have B12 injections for life.
Loading doses followed by every other day injections should continue until asymptomatic. Treatment can then be changed to oral supplements.
Vegans are not exempt from other underlying conditions that may cause B12 deficiency so, if symptoms re-emerge when on oral supplements, then B12 injections should be re-commenced and further investigations undertaken to try and determine other potential causes for the deficiency (there are many - though GP's rarely consider some or most of them).
It’s also worth noting that the symptoms of B12 deficiency can also be the symptoms of many other medical conditions - so in cases of treatment resistance, then other underlying medical condition should be ruled out (applies to those with dietary deficiency, and to those with other 'non-absorption' causes of deficiency).
I'm a case in point! Due to long standing and then under-treated B12 deficiency, it took me a long time to ‘ get control' (ha) of symptoms. Then - they suddenly re-emerged again. Initially I assumed that I simply needed more B12 for a while - but that made no difference.
After a long battle with more medics than I care to mention (or remember), I was eventually diagnosed with Lupus. So now...being treated for lupus...but I still need weekly injections of B12 to maintain that aspect of health management (I've learnt through hard experience to distinguish between lupus flare, general nuisance lupus symptoms (ha to that - but it’s really not funny)...and the need for vitamin B12 ).
"Loading doses followed by every other day injections should continue until asymptomatic. Treatment can then be changed to oral supplements."
I'll assume you meant "Loading doses of every other day injections until no further improvement of symptoms"
I've always been under the impression that the doctor should try to determine if the patient is likely to have a dietary deficiency before starting injections. That's easily done, just ask the question - "Are you vegetarian or vegan?"
If the answer is yes then it is much more likely that their deficiency is caused by a lack of B12 in the diet. And that immediate oral supplementation should get serum levels up fast enough.
I’m not vegetarian or vegan and my low B12 is down to diet, even though I thought I ate all the right foods.
As Foggyme and a few other people in this thread have tried to explain, it doesn’t matter why your deficient, if you suffer neurological symptoms, injections should be given.
It's simple to understand, yes. But it's not written down as clearly as that. If I were a GP I would treat a dietary deficiency with oral B12.
Just quoting the BNF guidelines doesn't help because, as I try to point out, the exact same logic tells you that people with a dietary deficiency and no neurological symptoms should also be treated with injections.
i understand what you’re saying but it is not being suggested in this thread that a B12 deficiency due to dietary deficiency should always be treated with B12 injections.
Just that those with neurological symptoms should be always be treated with B12 injections! Even when that deficiency is caused by a suspected dietary deficiency.
We are all aware that all the various treatment guidelines (including the BNF prescribing guidelines) are far from ideal (in their different and various ways)...and we could debate the obvious shortfalls until doomsday.
This discussion is overtaking this post...please...as before...can this stop now.
Sorry but you're missing the point again...and nit-picking to boot!
Asked and already answered...B12 deficiency when neurological symptoms are present...treat with B12 injections (whatever the suspected cause of the deficiency).
I wish you well CBD123 I believe it is even possible for some symptoms to get worse after treatment has started and the B12 gets to work repairing damage to the nerve endings caused by the deficiency in the first place.
I am not a medically trained person but have had P.A. (just one of the causes of B12 deficiency) for more than 48 years.
Thank You for your reply clivealive I’m sure I’ve read that too somewhere. You have to really dig deep when it comes to this matter and not all GP’s know all the information.
If I remember correctly, many on this forum have also advised to take folate as it is needed for the B12 to do its work and a folate deficiency can have similar symptoms. The knowledgeable folks can correct me if I am wrong.
I had non-measurable levels of B12 when I was diagnosed and while I feel much better than I did, I think I am still making small progress month by month some two years later. So I think the repair work can take a while.
Until 2016, I'd never even heard of B12 and believed I was healthy up to that point.
I have B12 deficiency, then diagnosed with functional B12 deficiency, and a family history of many, many autoimmune conditions.
I had a B12 level of 196 ng/L originally.
Low folate, low ferritin - which took about 2 years to control, osteoporosis of the spine so vitamin D on prescription. Raised MMA for at least 3 years.
B12 sprays don't work for me. Frequent B12 injections stop my symptoms getting worse, but they haven't gone. Less injections = more severe symptoms, more frequent symptoms, return of symptoms.
I don't think I gradually got dietary deficiency over 35 years . That would be the unlikely answer. It would now also be completely immaterial what I was eating, from a B12 point of view !
CBD123 : so yes, you can be very ill with a B12 level of 193 (ng/L ?).
It is really good that you have been able to absorb some B12 orally.
But measurements do not indicate betterness (not a word? never mind): relief of symptoms is what you want and what your GP should be aiming for on your behalf.
It takes time. It takes a good GP. It takes research: if she does it, you won't have to !
Thanks for your reply topher2018, my folate was low when I had my bloods taken again so just finished a course of folic acid too. Would have wrote that in the original post but was trying not to make it too long 🙈 thanks
I'm not going to even try to give you medical advice as there are others on the site with better insight and help.
All I'm going to say is most of us have / having on going battles regarding getting the proper help from the GPs. You must remember that General Practitioners have to have a very broad knowledge so not always in depth on some issues.
As for myself I have finally been acknowledged that my issues do warrant 2 monthly injections - I also made them put this information in a couple of places on my notes so no one can say - "the computer says no"
I have found newly qualified GPs can help as they are just out of education. But, make sure you go into the appointment with a clear idea of what you want the outcome to be.
Finally, please don't forget by you quoting the latest guidance and pointing out their lacking of knowledge can be troublesome. I have been there and got the t-shirt. Even the nursing staff somethings think they know best. Just keep reminding them that its your body and you certainly know it well and when its not right.
Take care we (the royal we) have all experienced issues that's why we are on this site and will assist in anyway we can.
Thank you for your reply Kate1914, yeah I don’t think she appreciated me telling her that. I just hope this neurology appt comes sooner rather than later!! Thanks
I have constant neurological issues and understand the anxiety with it.
Here in the U.K. the treatment for those with neurological symptoms is B12 injections.
Have you had your folate and vitamin D checked? If these are both low they can both cause symptoms and maybe making your neurological issues worse. For me these were both low from the beginning with my very low B12, I have PA plus neurological issues from a childhood illness which maybe different but with my PA and this I feel a hell a lot of difference with the b12 injections so for me I have found b12 injections a life line but my doctors have been unsupportive.
With doctors it can be a battle unfortunately, Can you make a complaint to the practice manager in writing and state your findings and the facts ?
Thank you LittleA for your reply, yes my folate was low last time I got bloods so just finished a course of folic acid, have been tested for Vitamin D and apparantly that’s fine.
I’m definitely going to write a letter highlighting these points and see what happens!! Thank You
Hi! I can’t offer much advice but I am in a very similar situation to you - low B12, had injections but had a negative intrinsic factor test so was switched to tablets after 2 weeks of injections. I have similar symptoms to you so was referred to a Neurologist to get checked out. My appointment is just over a week away and I’m incredibly anxious about what they might say. My suggestion to you - stop Googling, just wait for your appointment. Keep busy, I find I am more aware of my symptoms when I have time to think about them and quite possibly get myself in such a state that half of it might just be ‘in my head’ anyway 🤦♀️
Download and read this - onlinelibrary.wiley.com/doi... - especially the big on page 500 that talks about Intrinsic Factor antibodies, and how the test gives a negative result in 50% of people with PA.
So you should never have been switched to tablets.
Thank you for the info! I will have a proper read of this later. I have another blood test booked to see if the tablets are working, if not I think I’ll just inject myself! The ones I was prescribed gave me indigestion so I found my own, stronger ones anyway 😬
Sorry fbirder but can I just ask why you think MissPinBG should never have been switched to tablets?? When basically you have just argued your case that I should not be put onto injections!! We are both in very similar situations!!
The B12 treatment alert in the link below states that clinical B12 deficiency with neurological symptoms should be treated immediately with parenteral (non-oral) therapy to prevent potentially serious neurological damage...even if serum B12 levels are within normal limits. This applies to ALL causes of suspected B12 deficiency where neurological symptoms are present.
archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
And here, information from the respected B12 Institute in the Netherlands, which highlights some of the issues surrounding treatment with oral supplements.
I know I shouldn’t but It has helped, esp finding forums like this. I’ve learned more online than what my doctor can tell me. Don’t get me wrong I’ve convinced myself I’m dying of some horrible condition a good few times too 🙈
I hope your appointment next week goes well, at least hopefully it can put your mind at rest. Please let me know how you get on
All - some debate in this string is unnecessarily argumentative and not helpful for original poster.
CBD123 - I'm closing this post to further replies. Please be assured that there is nothing 'wrong' with your post and I hope that the majority of response have been helpful.
Please do post again as and when you need further advice...and we'd love to hear how you get on.
Best of luck 👍
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