Hello. I am new here and have some questions about Vitamin B12 deficiency symptoms and recovery time. I am 32 years old and was diagnosed with a Vitamin B12 deficiency. It has been about four years since the B12 deficiency symptoms appeared, and took that long for me to receive the diagnosis. I have also more recently had the 'Intrinsic Factor' blood test to determine whether Pernicious Anaemia is a factor in this, and will receive the results in a few days. My primary symptoms were increasingly severe fatigue, sore joints, muscle pain, decreased co-ordination, increasing cognitive and memory impairment (especially short term memory and concentration- 'brain/memory fog') and pressure headaches. I received six 'loading' doses of B12 in the middle of last month, and am due for another dose in three months. As such, it has been about a month since I received the last 'loading' dose.
I am concerned as after an initial small improvement about two weeks after the last dose, I now feel as bad, if not worse than I did before the administration of the doses. As my doctor has not yet said anything to me about recovery times or the long term prognosis, I was hoping that someone here could tell me how long recovery takes, and whether full recovery is possible? The symptoms went untreated for as long as four or five years. Does this mean that the damage to my body is such that I may never recover? I am especially concerned about my mental symptoms- how long will they take to resolve, if ever?
Having read a few of the posts on this website, I understand that a B12 dose administered every three months may be insufficient- would it be worth asking my doctor for a more frequent regime of doses? Others have talked about self-medication by supplements. If it turns out that I have Pernicious Anaemia, how will supplements help given that the B12 must bypass the gut and arrive directly into the bloodstream?
Many thanks in advance for your help!
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if you are UK based then would suggest that you draw your GPs attention to the fact that there are actually two protocols for treating B12 deficiency - depending on whether neurological symptoms are present or not. You clearly do have neurological symptoms - the problems with co-ordination and the cognitive problems. This means that loading shots should be 3x weekly until symptoms stop improving. Maintenance doses in this case should be given every 2 months .... though even that isn't necessarily sufficient.
Some B12 is absorbed outside the gut - averages about 1% so high doses taken orally can be effective in getting enough in to stabilise levels but are unlikely to be sufficient to raise levels to correct a deficiency ... loading doses are about raising levels to correct the deficiency.
Please be aware that the IFA test gives false negatives 40-60% of the time - which means a negative is a long way from ruling PA out as the cause. It is useful to know what the cause is as different causes have different consequences ... and a few - h pylori infection and worm infections are treatable. PA is not the only absorption problem that requires n-going maintenance.
these are the BCSH guidelines which your GP can also access through the BNF and the two treatment regimes is also mentioned in the NICE guidelines.
The most likely reason symptoms have returned is that you are now deficient again or you are functionally deficient because the B12 isn't getting through to your cells ... but will do when the levels in your blood are high enough - and that could mean they need to be well above the normal range in future.
Unfortunately B12 is a very personal thing so it isn't possible to say how long recovery will take. B12 is used by a number of processes in your cells and some symptoms can be down to the effects on one more more processes. Some processes start running properly very quickly - others have been damaged and take a while to correct. Macrocytosis takes a number of months. Nerve damage takes much longer. If the problem is the processes that reset neurotransmiters they can return to normal much quicker and the processes that release energy in your cells can start running better almost immediately. Some people notice differences quite quickly and others don't notice anything for months.
I was diagnosed over three years ago. Most of my symptoms ceased rather quickly - memory, articulation, blurred vision, fatigue all improved. However, I had cognitive problems - absence seizures during which tinnitus occurred followed by auditory hallucinations. I still get the absence seizures - they occur sometimes days after my 12 weekly injection but mostly after around five to six weeks - but the tinnitus and auditory hallucinations have ceased (for good, I hope!).
My doctor will not budge on the 12 week injection cycle so I self medicate orally and in tablet form. I have developed pressure headaches which I never had before but this possibly caused by ingredients in the tablet - cyanide, I think!
In short, it’s a long haul and possibly a full ‘cure’ is not possible.
Stay with the forum though and, at least in my case, the fact that so many people are far worse off and live with daily symptoms and still commit to helping others humbles me and puts my symptoms in perspective.
Sorry to hear about your symptoms- I hope that they continue to improve. I have not (so far) experienced any tinnitus or auditory hallucinations, nor absence seizures. I have definitely had problems with cognition and short term memory though, in fact, along with the pressure headaches and fatigue, these are the main symptoms in my case. Have you tried raising the NICE guidelines regarding B12 deficiency and injections with your doctor? Apparently, if the patient has mental symptoms, then the injections should be continually administered on alternate days until there is no further improvement in symptoms, then every two months hence. I plan to print them out and take them with me to my next doctor's appointment in a few days.
According to the N.I.C.E guidelines loading doses should "continue until there is no further improvement" in neurological symptoms which include those you mentioned above so one option would be to list them and go back to your doctor asking for the injections to continue.
Click on the link, then on "Scenario: Management" and scroll down.
If it is determined that you do have P.A. with neurological symptoms then "Maintenance" injections may be administered every eight weeks
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 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.
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.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
I am indeed in the UK and will bring up that NICE directive with my doctor when I see him in a few days. I believe that my folate level was checked and my doctor said that it was in the normal range. Thanks for your help!
It is important that your Folate level is monitored as this is essential to process the B12 you are having injected.
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.
I have many of the neurological symptoms you have and am in the early stages of injections as well. Some things are improving but when I first started injections a little over a month ago I noticed I felt much worse at first - this lasted for many weeks so I would suggest that perhaps you were not treated for long enough. I would get very breathless and tired and weak, this still happens on and off after injection and I’m in my 6th week of injections. Did they do any other tests for PA other than intrinsic factor? I haven’t been checked yet for PA and am wondering if there are other tests I should be asking for.
Hope your GP is aware that it is possible to still have PA even if IFA results are negative or normal range. See flowchart in links below.
BSH Cobalamin and Folate Guidelines (link below) in my mind, make it clear that a person with b12 deficiency with neuro symptoms, should be on neurological treatment regime, whatever the cause of B12 deficiency.
More b12 info below and in pinned posts on this forum.
B12 is found in meat, fish, shellfish, dairy, eggs. It is sometimes added to food such as breakfast cereals. If you are eating plenty of B12 rich food then diet is less likely and an absorption problem is more likely, as a cause of b12 deficiency.
Forms of b12 are found in a few plant sources eg some seaweeds but these are generally B12 analogues, forms of B12 that the body can't use.
Coeliac disease can lead to B12 deficiency due to its effect on gut. In UK guidelines it is recommended that anyone with unexplained B12 deficiency, folate deficiency or iron deficiency should have tests for coeliac disease.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.
You mentioned above you're in UK. I'd suggest reading all of these listed below. Useful summary of B12 documents/articles in third pinned post on forum.
I agree with Hidden that it can be helpful to get copies of blood test results. I always do...I learnt to after being told everything was normal and then finding abnormal and borderline results on copies.
Thanks for this information. I will ask the doctor for a copy/printout of my results and will raise the issues you have highlighted with him- in fact I will print screen and paste this!
If GP is reluctant to consider the neurological treatment regime then may be worth discussing the potential neuro consequences of PA/b12 deficiency.
UK B12 treatment for patients with B12 deficiency with neuro symptoms.
A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months.
Details can be found in
1) BNF British National Formulary Chapter 9 Section 1.2
UK GPs will probably have a copy of BNF on their desks.
2) BSH Cobalamin and Folate Guidelines
Neuro Consequences of Under treatment of B12 deficiency
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