In December I presented with some pretty awful symptoms and was diagnosed as folate deficient. However after 2 months of folic acid still felt unwell so decided to start supplementing b12 (serum level 238 with neurological symptoms) I took sublingual b12 for 2 months and saw huge improvement. My gp retested my bloods in march and b12 had risen to 2000. I was told to stop supplementing. Reluctantly I cut down from 5-10mg a day to 2.5mg a day and I have seen a return in the dizziness and numbness in my arm. I am going to return to my GP but he was never happy to treat me as deficient in the first place so feel he'll try and fob me off. Is it possible my levels are high but not necessarily functioning? I'm aware the levels will be high because I'm supplementing but should my symptoms return after a few days of not taking it? Any advice would be greatly appreciated.
Thank you in advance.
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Awil
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The B12 absorption mechanism is restricted to transferring about 10 mcg at a time from the gut into the blood. So changing from 5000 mcg a day to 2500 mcg a day should make no difference.
Have you been seen by a neurologist? There are lots of possible explanations for your numbness.
Hi Awil just out of interest - when you were tested in December and found to be Folate deficient was your Vitamin B12 level checked at the same time and is it possible that was deficient too?
"Care should be taken not to give folic acid (instead of B12) to any patient who is B12-deprived, as this may result in fulminant neurological deficit".
Do you know why you became Folate deficient in the first place - do you eat vegetables which are a natural source? Are you a meat, fish and dairy eater for B12?
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
When I was told I was folate deficient my serum b12 was 238. When I first became unwell I had 15 symptoms listed in the PAS checklist. Including neurological symptoms however the gp said all was normal. Could the fact that my level had gone up to 2000 just be because I was supplementing every day and that number could just start dropping as soon as I stop?
The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
Click on the link - go to full guideline and read paragraph 4
I hate that word "Normal". Your B12 at 288 was toward the bottom of the range (do you know what that was?) but regardless of that, as it says above your neurological symptoms should have been treated.
Having subsequently taken B12 supplements will of course raise the amount swirling around in your bloodstream.
Please remember I am not medically trained but personally if you feel a benefit by supplementing with B12 and are adversely affected by stopping or reducing the amount then I suggest you continue what you are doing as you cannot overdose on B12 - any excess being excreted via your urine.
"Could the fact that my level had gone up to 2000 just be because I was supplementing every day and that number could just start dropping as soon as I stop?"
I would say Yes based on what I have come across dealing with my own issues although I'm not medically trained. I suspect you have a GP who has not bothered to read the guidelines and probably thinks high vitamin b12 is dangerous.
"Measuring cobalamin levels is *unhelpful* as levels increase with treatment regardless of how effective it is, and retesting is not usually required." -
Symptoms are more important.
This is because serum vitamin b12 shows what is in your blood (and not even if its active b12 or a form still usable by the body ) not what is in your cells. There are better indirect test if your not actively supplementing to look for a functional b12 deficiency - Homocysteine (although this could be folate) and Methylmalonic acid levels (which can be done as a urine test) but why this isn't done is a mystery.
Thanks for your reply. This is the problem, I started supplementing as I had read about the neurological damage that can be caused. Now I know that any test carried out will probably be skewed however I'm not happy to stop supplementing as I know the symptoms will return. I think I'll carry on taking it as I know there is more of an issue when the levels drop than if they are high. Is it a waste of time having the MMA or holo tc test done now?
Well looking at my situation in hindsight I would say MMA or holo tc test won’t for the most part tell you anything you don’t already know and it might be hard to get them done via the NHS (and may even cause an uninformed GP to wrongly exclude b12) although MMA could show you have a functional deficiency of B12 even with high serum B12 the research on this unfortunately is lacking other than to try even higher/frequent doses of B12 and judging by the sound of your GP even if this was the case they probably would not be much help.
What I would focus on is coming up with an explanation as to why your deficient in folate and B12 - do you have any digestive problems or are there any in your family?
Are you a vegetarian or vegan?
If your still regularly eating wheat get tested for coeliac disease. On that have they tested you for Iron deficiency make sure they do Total Iron Binding Capacity not just Ferritin
Get your GP to test for nutritional deficiencies I would do at least Zinc (to show that low copper is caused by unbalance zinc supplementation), copper, and Vitamin E as in practice those last 2 would be cause by digestive problem not diet. I would also trying asking for the other B vitamins as they need for B12 to be utilised properly.
I am ashamed to admit that for around a year prior to feeling unwell I had a pretty poor diet, far too many takeaways and not enough veg. I have changed this since by eating lots of green veg and more red meat. I have actually cut out gluten as I found I was getting mysterious aches and feeling fluey after consuming it. There is no damage to my gut though, I had a gastroscopy to rule out anything nasty when I lost weight so rapidly when the symptoms first started. So I presume no coeliacs disease, maybe just a sensitivity.
I improved so quickly after taking the sublingual b12 that I can only assume that was the cause of all my symptoms. But my GP loves to look at those numbers on his screen! My level was 238 and the range 180-900. Since reading about active b12 this tells me that my levels seem considerably low. I have had FBC, thyroid, liver, calcium among others which have all been in his opinion normal.
That is mysterious. What they you mean by takeaways as they strangely enough might by fortified with folic acid especially if it contains (wheat) flour.
As it should take longer than a year for a diet related b12 deficiency to appear.
Did you see a gastroenterologist for the gastroscopy and did they give you a blood test for coeliac disease? Also how long was the gastroscopy after you stopped eating wheat?
Have you ever tried regular b12 tablets not sublinguals as I’m curious to know if you can absorb vitamin b12 from food?
Have they tested for Intrinsic Factor Antibody to rule out traditional pernicious anemia?
Then thinking mainly about folate deficiency what was your alcohol intake like and were you taking any medication.
Sorry for late reply. I did see a gastroenterologist buy they weren't testing for coeliacs disease just to see why I had lost weight. I was still eating wheat at the time of my gastroscopy.
I haven't tried b12 as a standard tablet as I wanted to ensure it was going in. Maybe it's something I should look into.
The go seems reluctant to do any kind of test relating to the b12 as all he ever says is that it was "normal" and that now I've supplemented it's too high. It's all very frustrating!!
Thanks for your response and i have no problem with the questions.
“I haven't tried b12 as a standard tablet as I wanted to ensure it was going in. Maybe it's something I should look into”
Oh sorry for the delay too (I thought I had replied - I temporally stop taking b12 to see what happened) I should have clarified I was just curious to know why you tried sublingual b12 and wonder if you tried standard b12 tablets or a b complex first and either notice your weren’t absorbing B12 (after questioning a blood test like I did) or did not notice any effect from it.
“The g[p] seems reluctant to do any kind of test relating to the b12 as all he ever says is that it was "normal" and that now I've supplemented it's too high. It's all very frustrating!!”
It sounds like you GP knows nothing about vitamin B12 - can they point to why they think high serum b12 is a problem? As well as why they ignoring your neurological symptoms.
Is your GP male or female and what is your gender as unfortunately many GPs are very quick to think women are hysterical hypochondriacs especially if the GP doesn’t know the answer but doesn’t want to admit it. But since they have acknowledged the folate deficient it might be worth seeing a female GP. Then
“Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop.”
“Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.”
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In short symptoms are more important the fact the test are "normal" is irrelevant (so the guideline say there is no point bothering to test for it and the minimum is way to low anyway apparently it 500ng/l in Japan and I have come across calls for it to be at least 300ng/l) as testing for B12 in the blood does not show what actually reaching cells.
If that doesn’t work I would (join if you have not already done so) ask the pernicious anaemia society for help.
Well it so happens that yesterday I saw a female locum who instantly agreed that she would treat me as b12 deficient with the symptoms I presented with in December.
I had to go to the Dr again as after stopping the supplements, as instructed my GP, I have started to go down hill! The locum recommended I start with the sublingual supplements straight away and to keep taking them.
I just wish I had her as a regular gp as I know I'll meet resistance when I go back to mine. I'd like to ask for injections as a trial but I know he'll disagree!
Do you know how long she is planning to be at surgery for? As I would try and see if she would try doing a loading dose of vitamin b12 injections as recommended in the guidelines especially as your being treated for a folate deficiency and the guidelines say “Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop.” - I would argue in the context (you have already supplemented and the levels in the blood are only a guide they are not too helpful if your supplementing of what is going on the cells) that should try vitamin b12 injection loading dose due to the neurological issues your clearly having.
Unfortunately many doctors don't seem to understand how sublingual b12 works thinking this means you can absorb vitamin b12 from food or tablets.
You also need to question them if they imply or say that high b12 or vitamin b12 injections are dangerous in some way the source of their concerns as well as weight to against the much more danger of allowing neurological disease to develop.
"For people with neurological involvement
Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."
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