I've just had bloods due to gradually increasing fatigue,brain fog,exhaustion, dizziness on standing. I also have tinnitus. The tiredness has gradually got worse, but it is the crappy memory and brain fog that does my head in. I've really noticed it in work, and have to pull my work van over to sleep sometimes in the day!
I'm 48 and in decent health.
My serum folate is low at 2.9, Vit B12 450, HB is 130 (13 in old money!.) The other FBC components are in range.
Though the symptoms o could be attributed to other things, I'm wondering what a sensible approach would be in speaking to my GP, in terms of other bloods to exclude pernicious anaemia.
Any advice would be appreciated!
Chris
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Bertolli
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Do you know if your B12 was measured before? If so and there was a significant drop in levels (ie the previous levels were more than 20% higher than your current levels) that would indicate a B12 absorption problem. The need for this level of drop is because the serum B12 test has an error range of 20%.
Individuals vary considerably in how much B12 they need but the body has a very specialist mechanism for regulating levels (release of stores from the liver in bile into the gut). However, this mechanism relies upon the same mechanism as is used for absorbing B12 in the terminal ileum so if that isn't working then the release mechanism becomes inefficient or doesn't work at all and serum B12 levels will start to plummet.
This means that serum B12 levels are no longer adequate for the individual concerned and they will start to exhibit symptoms of B12 deficiency, but because these drops in levels can be quite slow at the start of the problem, the development of symptoms tends to be very slow and can take years or even decades for a full blown deficiency to manifest.
Because folate is also absorbed in the ileum, a folate absorption problem may be picked up earlier and should be seen as an indicator that a B12 absorption problem may also be developing. As serum folate levels are not regulated in the same way as serum B12 levels, the symptoms of folate deficiency - which have a huge overlap with B12 deficiency - will develop quite rapidly.
If your diet is rich in folate (eg leafy green veg) then your low levels would seem to be due to an absorption problem rather than a dietary deficiency, so the likelihood of B12 absorption problems is quite high.
The source for most of the information above is the Guidance on diagnosis and treatment of folate and cobalamin disorders produced by the BCSH
B12 is only found in animal products so if you are vegan or eat very little meat/dairy/fish/eggs then you can develop a dietary deficiency but, again that develops very slowly because liver stores about 3 years worth of B12.
B12 is used in a lot of processes that go on in your cells which means that they symptoms are vary variable and different symptoms will develop first in different individuals. Whilst B12 deficiency is classically associated with megaloblastic anaemia this is not present in at least 20% of patients when they first present with b12 deficiency
thanks, that us very interesting, and I'll have a read of the guidelines. My diet isn't awful, but it isn't high in dark green veg, and I'm poor with fruit, so defo room for improvement. I should have said that I've been started on folic acid for 3 months. Would you ask for any other bloods or pit it down to diet and stick with the folic acid?
Your symptoms are very similar to what I experienced when I realized I had a B12 issue. The blood counts were normal but I felt like crap and no doctor could explain why. It wasn’t until I started injecting weekly with B12 for 2-3 months before I started feeling better. In your case, I would also supplement with folate and possible inquire if it could be MS since the symptoms are quite similar.
I had those very same symptoms which are not good if your having to pull over for a nap whilst on the road.
My heamatologist put me on folic acid which I feel masked what was going on with my B12. I take an easy iron supplement so as not to constipate which is in a liquid form but you can buy tablets.
I would also go back to my Gp to explain that your having to pull over for a nap whilst at work and ask if it's possible that you could have a trial of B12 injections to see if they improve your symptoms.
Failing that if not an absorbtion issue you could try B12 shots which you drink - might be worth a try.
thanks, I will do that. Rather than trial B12 though, is there a blood test that reveals absorption issues. I think it is ther intrinsic factor test, but am confused.
This is a difficult one because the Dr hasn't done full elimination of your problem. Many of the tests carried out come back negative and although results are marked as normal they very often are not plus they dont bother to test our active B12.
I have been waiting months to be seen by a gastrologist to see if my issues are absorbtion but what the hell are patients suposed to do in the mean time ? Many are self injecting me included simply because I could no longer function. The tiredness or should I say exhaustion was unbearable plus I felt so weak.
Ask for your thyroid to be checked as Budsa has mentioned but also discuss how this chronic lethargy is affecting you at work. Have you any pins and needles, burning or stinging in your legs or sores that wont heal ect ? Sometimes we have to be our own guide and look at our diet, symptoms and other health issues which our Drs tend to miss. So far other than a low folate and B12 my tests have been normal.
Your still young and dont want this affecting your work or putting you at risk whilst on the road. I paid to have some private tests carried out just to compare against the Gps.
thanks again, and sorry you've had such a wait for answers. Just to be clear for my own understanding, I thought that there were blood tests to check on absorption disorders that were available through a GP. Was your GP unwilling to order these, or have I got it wrong? Thanks for your replies
NAC is helpful for tinnitus. It doesn’t cure but it will help take the edge off so you don’t notice it/won’t keep you awake. The dizziness makes me wonder if there is an adrenal issue. Adrenal fatigue causes dizziness on standing and brain fog.
The symptoms of folate deficiency are very similar to B12 deficiency, and although your folate is low I’ve often wondered if the balance between B12 and folate is affected more than we actually know, as there is clear evidence that treatment for folate should never be given unless the B12 is normal (which is actually hard to establish when there is no reliable test for absorption) !
There is a definite lack of up to date research on PA/B12 deficiency, even considering the Nobel Prize won long ago by three scientists. This, therefore, is the most up to date BMJ research document (summary only below but GP should be able to access) on PA/B12 deficiency, which clearly defines it as a serious condition, hard to diagnose because of the lack of a gold standard test, and therefore the patient’s symptoms are of the utmost importance.
One of the most relevant summary points:
"If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features".
UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections (even if B12 is within normal limits):
Not only does the latest BMJ research document summary only state there is NO reliable test, but Dutch links confirm this. The BMJ document also states symptoms are paramount and, together with UKNEQAS, confirms that any neurological symptoms should be treated with injections without delay to avoid permanent damage
Perhaps print these links out for your GP and list the neurological symptoms you have, e.g. unusual fatigue, tingling nerves, tinnitus, any balance problems in the dark, etc. The advice in these documents can surely not be ignored…….
Wow! That is really helpful stuff thanks. Polaris.
As you say, there is a bit of paradox as the GP response to a patient with signs of anaemia is to book the usual bloods, but the B12 is not reliable, and it is confusing to know what else to do. I have had a good read on the website, but will read all your links carefully and share with my GP.
Thanks to the website and forum though from me and my father. He has been diagnosed with psoriatic arthritis ( auto immune) but has odd chronic symptoms of numbness and pins/needles in his legs, brittle nails, weight loss (which has been investigated with routine bloods and nil found) It sounds very suspect for B12 deficiency, especially as he is a vegetarian.I have made him aware if the site and suggested he ask his GP for B12 injections!
It also increases my chances as he has an auto immune disease and possible pernicious anaemia! Thanks to educated people doing their own research 👏 👏
Yes, definitely people over 60, vegetarian and with symptoms should be aware that B12D is very common.
As you probably know by now though, it is very difficult to get a GP who is aware of the full problems of a deficiency and willing to give sufficient treatment, which is why so many of us self inject.
I do hope you can both get at least a trial of B12 injections and go from there….🤞🤞
PS You probably already know there is the Intrinsic Factor test but this is only 40/50% reliable…….
Film about Sally Pacholok and video re. B12Def. available to watch on Tracey Witty’s B12Def. website:
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