I had my bloods taken back in October last year and was at 121 on my b12 levels. I had the loading injections and re tested bloods a week ago which have come back at 208. The doctor has said this is fine and no further action is required. I feel okay in myself other than being constantly tired even after a good long sleep. I also get confused or forgteful occasionally and have been having some chest problems. I have found a B12 oral spray and wondered if anyone else has tried it and if so did it work?
Thanks
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Natty91
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Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA test (Intrisic Factor Antibody) test and start initial B12 treatment. This applies whether B12 is low or within range.
IFA test can help to diagnose PA (pernicious Anaemia but test is not always reliable and it is possible to still have PA even if IFA test result is negative (called Antibody Negative PA).
Hi Natty91 Hopefully your doctor is right when he says 208 "is fine" as that looks to be a bit low to me.
As for the B!2 Boost spray I take two "squirts" night and morning (in addition to lifelong injections) and do feel a definite benefit as I've had P.A. for 45 years and am 75 years old.
Do make sure your Iron and Folate levels are "good" as these work together with B12.
Hi Natty91. A serum B12 level of 208 following B12 injections is very low! And your initial reading of 121 sounds like you were severely deficiency in B12. I suspect that your B12 level is likely to continue to fall until you become severely deficient - again.
All the guidelines state that following treatment with B12 injections, there is no need to test B12 levels again - unless looking for low levels, in which case more B12 is needed! And the golden rule - always - is treat the symptoms (not the serum B12 levels). So...your GP is overlooking one main fact - you do still have the symptoms of B12 deficiency (constant tiredness, confused and forgetful (a neurological symptom), chest problems (though you don't say what these are)...and you may have other symptoms of deficiency that you are not aware of as being symptoms (many do). (Will paste the symptoms list below so that you can check).
Where neurological,symptoms are present, it is important that B12 injections are continued...and also that you get the right regime (just wondering - did you have neurological symptoms when your B12 deficency was originally diagnosed?)
Following the loading doses, the neurological regime is injections every other day until no further improvement - for some this can be quite quick, for others it can take many months. Not treating or under treating B12 deficency can result in a condition called subacute degeneration of the spinal cord. I'm not trying to frighten you or suggesting that you have this. Rather, many GP's are unaware of the neurological havoc that untreated or under treated B12 deficiency can wreak on the body, so you may need to bring this to your GP's attention.
Note - the BSH (document in the links below) state that any level of B12 that is below 200 should be treated...and your B12 level is only a smidgen above that...you have the symptoms of deficency...and given your history, it's likely that you B12 level will continue use to fall.
Also wondering...did your GP investigate the cause of your original deficiency. This is rarely due to dietary causes and is most often due to a absorption problems, which can be cause by a range of things, not just PA (i.e. Drugs that impede the absorption of B12 - PPI's and metformin, for instance, infection with heliobactor pylori - a bacterial infection that affects the stomach, intestinal or gastric surgery, inflammatory bowel conditions - Crohn's, coeliac disease, IBS etc)...
In short, I suspect that you are still B12 deficent (your GP may not know that B12 deficeny can be present, even with apparently 'normal' B12 levels) and given that you've had injections, your B12 is much much lower than would be expected. And, as I say, you have the symptoms of deficiency...(goodness knows how your GP can ignore that 😖).
You should not be left in the position where you are having to use a B12 spray to try and get well. Also - if you have absorption problems, a spray will not be a long term solution to B12 deficency since not w ought will be absorbed to effect proper repair (though some do use it as a quick fix to top up between injections).
And note: where neurological symptoms are present, all the guidelines state that injections should begin immediately 😀.
Also wondering (lots of wondering going on 😀) if,your GP has checked your folate levels. B12 and folate work together so if your folate levels are deficency or low, your body will not be able to utilise B12 properly 😖)
So...I think it would be a really good idea to go back and discuss this with your GP, the aim being to get your injection reinstated.
I'm going to insert some links below that will give you information and guidelines that will provide evidence that you can show to your GP to support a request for o going treatment - and perhaps further investigations into the cause of your B12 deficiency 😀. Worth paying particular attention to the documents relating to problems with serum B12 testing...and the need for co tinted treatment where symptoms are present - even where B12 levels are within what's called 'normal' limits (see the UKNEQAS B12 Treatment Alert - advises doctors to treat immediately if neurological,symptoms are present - even if B12 levels are reported as 'normal').
Please don't be daunted by what looks like a lot of information to read. Most of the documents are one page long and the slightly longer one (BSH Treatment guidelines) has summary sections if you don't feel up to the whole thing 😀. And it really will help you with your GP, who perhaps knows very little about B12 deficency and its treatment.
Good luck and please post again if you need more help. Here come the links...
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
Many thanks for your reply. Yes, my folate level was checked in my first blood test and was 9.3. My ferritin was also checked which was 49 (range 10-300). And my IFA was negative.
My folate was checked again this time and has gone down to 4.7, is this a good thing?
Also in both my tests the Basonphil and Eosinphil levels have been out of normal range. Do you know what this means? Could it be linked to B12?
No, my Dr has done nothing regarding investigation of why I am B12 deficient, what sort of tests can be conducted to get to the root cause? She did request a blood test for helibactor pylori which came back normal.
The chest issues are heart palpitations - could this be linked with B12?
Natty91 possible causes of B12 deficiency - excluding diet - include PA, Coeliacs, Crohn's, h. pylori, drug interactions (including metformin, NSAID's, PPIs).
Please also note that the IFA test is prone to give false negatives between 40-60% of the time depending on the assay method so a negative is far from being conclusive evidence that you don't have PA
Folate level is obviously dropping and now looks a little low (bit difficult to tell whether low or deficency as no reference ranges given). Did your GP suggest folic acid supplements? Getting supplements right is never easy because we're all different and what suits one doesn't necessarily suit another. Some here take 400mcg of folic acid daily as a maintenance dose - and some don't need any at all. Think you certainly need to talk to your GP about supplements - your GP may not know that B12 and folate work together - and that low 'normal' levels are not good enough for people with B12 deficiency.
Having low eosinophils and basophils is quite common (mine are always low too) and is usually nothing to worry about, and yours are only just below the reference range.
Low levels of both eosinophils and basophils can be caused by alcohol consumption, infection, injury, drugs (i.e. some antibiotics, prednisilone, vitamin B3, inflammation, allergies, hormone theaputic, autoimmune conditions...and a whole host of other things 😖.
The low levels have to be read against the other elements of the WBC (neutrophils, lymphocytes, monocytes) and within the context of other blood tests your GP will have done, together with your symptoms, to get the full picture.
So...low levels in the basophils and eosinophils alone is nothing to worry about. (High levels would be much more worrying).
And yes, heart palpitations are one of the potential symptoms of B12 deficency 😖.
Agree with Gambit about the IF test - not,possible to rule out PA - you could have something called antibody negative PA. (Details about diagnosing ab negative PA contained in the diagnostic flowchart in the BSH treatment guidelines given in the link above. Might be worth showing this to your GP and discussing - again, especially if you have autoimmune conditions in the family).
Tests - good starting point would be ESR and CRP (so called inflammatory markers) - not diagnostic but will show if any inflammatory process is taking place that could affect absorption. If raised, further investigation should take place.
Ask your GP to test for Crohn's, coeliac etc....also if any any medications, check if any impact on the absorption of B12 (many do).
If you have any autoimmune conditions in your family, it's more likley (but not certain) that you could develop one too(like PA, for instance - but there are many others). Ask you GP to do a routine antibody screen - if any of these results are positive, onward referral to a rheumatologist would then enable further tests and investigations, if necessary. Not inappropriate to ask for this test if there are autoimmune conditions in the family.
Also - and on a similar theme - B12 deficency often goes hand in hand with thyroid problems - and the symptoms of both are very similar. Has you GP tested you thyroid? Often GP's only test TSH but this is an imprecise marker of thyroid function. To get full thyroid status, you would need TSH, FT3, FT4 and the thyroid antibodies TPO and Tg (antibodies especially important if there's a family history of autoimmune conditions).
Really, the most important thing is that your GP should carry on treating your B12 deficiency...and investigation and look for causes while treatment is ongoing...especially because of,your neurological symptoms.
If your neurological symptoms continue, ask for a referral to a neurologist so that any potential underlying causes can be ruled out.
If you have gastric issues, referral to a gastroenterologist would be usual....and a gastroenterologist could investigate potential absorption problems etc.
Anyway Natty91...hope this helps...good luck with your GP and post again if you need more help.
It doesn't sound right that your doctor isn't continuing to treat you. A level of 208 is still low and you are still having symptoms.
My levels went to over 400 after the loading injections but I was put on three monthly injections as a standard treatment. I hope your doctor will look at continuing your injections and giving you a series of further blood tests for folate, ferritin and VitD. All needed for you to process the B12.
I used the spray as a "top up" when I felt I needed extra help before my next injection. If you use it, it will alter future blood tests from the doctor.
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