I had tested because I started with nerve symptoms Jan 1st - burning mouth, sore tongue, burning lips, cheeks, throat. Burning fingers and hands, burning toes and feet spreading up limbs during the night, waking me up at 3am most nights sometimes 4am. I thought maybe thyroid as my TSH has been steadily rising over the years but FT4 and FT3 in Blue Horizon normal range so are antibodies TPO and TG abs.
I did take vit B complex for a couple of days only as I panicked when started with symptoms a few weeks ago. But I presume from result that I at least don't have a problem converting to Active B12. Does anyone have any thoughts? Is having such a high active B12 anything to worry about or is it ok? Or even a good thing?
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LynneG
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Hi LynneG. I've just had a look at your previous posts so here's some things to think about:
Historically, it looks as if you've had low B12 levels for a t least a few years and that you've taking Bcomplex intermittently for several years to try and push your B12 levels up?
This seems to have brought your B12 levels up to the bottom of the reference range (sometimes called the grey zone), with your levels B12 levels being consistently low for perhaps a number of years.
To put this in context, neurological symptoms can occur in levels under 500 and a serum B12 level ideally needs to be above 1000 for effective neurological repair to take place. It's possible that oral supplements have not raised your B12 levels high enough to effect proper neurological repair and this is why you are now beginning to have overt neurological symptoms.
In the majority of cases, B12 deficency is causeed by absorption problems and whilst you may absorb some B12 from oral supplements, it is unlikely that you will absorb enough to get your levels where they need to be to start the repair process. (Link about this below).
Also - Bcomplex contains vitamin B6 often far in excess of the recommended daily limit of 100mcg, and 100mcg a day may still be far too much for some people (50mch a day can cause problems for some people). Too much vitamin B6 (pyridoxine) can cause peripheral neuropathy, so it may also be that you are over supplementing on vitamin B6 without realising it. If this is the case, it could be the cause of your neurological symptoms or exacerbate any that could potentially be a result of B12 deficency.
So...check B6 intake, maybe stop B6 for several months to see if there's any improvement...check that you are not getting over the RDA for other B's, and take individual B vitamin supplements so that you only get the ones you need...
As you have been supplementing with Serum B12 and Active B12 tests will be skewed (upwards) and you will not be able to get an accurate diagnosis of B12 deficiency.
Your GP should assess your serum B12 and Active B12 results in light of the fact that you have supplemented (don't forget, the effect of supplementation can keep both levels raised for many months after supplementation). And active B12 only tells you what B12 is in your blood - it tells you nothing at all about what is happening at a cell level, that is, how much B12 is getting to where it's needed, into the cells.
This is why all the guidelines state this golden rule - treat the symptoms, not the serum B12 levels (or the active B12 levels). Your GP does not appear to know this.
You have neurological symptoms so you should be treated immediately with an intensive regime of B12 injections (6 x loading doses (to get your levels up quickly) then alternate day injections every other day until no further improvement - for up to two years. Your GP may not know about is regieme.
This should be prescribed even though your B12 levels are low or 'normal' - see the UKNEQAS B12 Alert from the British Haematological Society (BSH) in the link below. This instructs medics to prescribe immediate treatment under these circumstances. Print it off and show it to your GP.
It sounds to me as if your GP is trying to be helpful but doesn't know a lot about B12 deficency, it's diagnosis and treatment, it's relationship to PA, Neuro symptoms and aneamia (some of which a not present, so GP's assume there is no problem - see link below).
The best thing you can do is read all the documents below. The best way to get the treatment you need is to become your own mini-expert so that you can help your GP to help you.
Highlight what is relevant to your case and take the information in for discussion with your GP. From what you say, it sounds as if she'll be prepared to listen. And if she does, this will lead to immediate treatment with B12 injections. This is important since under treatment in the early stages can lead to potential irreversible neurological damage - hence the UKNEQAS B12 Treatment Alert that I mentioned earlier.
Anyway LynneG...as always, there's plenty more that could be said about B12 deficency. But it's late, and I've run out of time. So...
good luck with the reading, good luck,with your GP...and please post again if you have any more question or need further help.
When I saw my doctor initially a couple of weeks ago because of symptoms. I was discussing my concern of possible B12 deficiency and I remember her saying that no haematologist would look at my case seriously because of my haemaglobin results. I presume that I will still get this stance. Because she sees serum B12 as normal and her back up to reinforce this is Haemaglobin being in normal range, plus MCV of 86.8 fl (range 80 - 98.1) does not indicate large red cells which would have been another indicator for her.
MCHC is my only abnormal test in FULL Blood Count (which has been abnormal low for years and dismissed) 325 g/L (range 335 - 370) Dismissed because they don't understand. She admitted that they don't really ever look at other.
I did raise the clinical practice guidelines and she said she had looked at recently and they only referred to pregnancy. I appreciate this is wrong and I hope to correct her.
But I fear her next step will be to refer me to a neurologist and so get an awkward patient off her hands. I really don't want referring and a diagnosis of MS or some such if I really need B12
GP's often say blood tests are 'normal' when they're not. It's not being inside the reference range that counts: rather it's where in the reference range the results 'sit'. And each individual result cannot be read in isolation to the others: it's a bit like a jigsaw puzzle: you have to consider all the pieces together to get the full picture.
The MCHC is a calculation of the haemaglobin concentration in the red blood cells. Low MCHC values (like yours) can be seen where haemaglobin is abnormally diluted in the red blood cells as in (amongst other things) iron deficiency anaemia.
Iron deficency aneamia reduces the size of red blood cells: the red blood cells become smaller (microcytic). And crucially, this reduction in the size of red blood cells can 'mask' a potential macrocytic anaemia (because the potentially larger red blood cells and made smaller because of the iron deficency anaemia).
So...where you results sit in the other results is important. If the MCV and MCH are at the low end of the range, this could also suggest a microcytic anaemia - iron deficency anaemia - which would again 'mask' a potential macrocytic anaemia.
Has your GP considered RDW - if this is towards the top of the range it could suggest both or either iron deficency anaemia and / or pernicious anaemia.
Suggestion that your haemaglobin is 'normal' may not be correct (the low MCHC may suggest otherwise). Again, it's where the result is within the reference range that counts.
Also - your GP should consider changes to blood work over time - abnormally low FBC, which has been ignored for years should be looked at in context with what's happening now.
The assumption that B12 is 'normal' and that 'normal' haemaglobin supports the assumption that all is okay is, well, quite ridiculous.
It's entirely possible to have B12 deficency without having any changes in blood results to reflect macrocytic anaemia. And as above, macrocytic anaemia can also be 'hidden' if the red blood cell size is reduced by iron deficency anaemia.
It would be a really good idea if you could get copies of your blood results (most recent and some of the older ones) and post them (in a new post) so that help can be given with interpretation. Most people always get copies of blood results (it's your right to have them) because GP's seem to get it wrong so often (mine certainly did).
Also - your GP is mistakenly assuming that macrocytic anaemia will always be present in cases of B12 and / or folate deficency. This is not the case. See the link for misconceptions about B12 deficency and the last link in the list for more information about this). Your GP certainly has a lot of misconceptions.
Referral to a neurologist is a good idea. It would be usual to refer someone with neurological symptoms to a neurologist, who will undertake further testing to rule out other potential causes of your symptoms. A diagnosis of MS should not be made unless there is clear evidence on a MRI scan of both head and spine - and if there is damage caused by B12 deficency, this would also show up on a scan (it would look different on scan a to the damage that can be caused by MS.
And if the neurologist happens to be someone who actually understand B12 deficency, treatment would be commenced immediately and your GP would be asked to continue that treatment. So perhaps you could look on it as a potential way to treatment - and a safety net to rule out any underlying condition - and that would be very reassuring.
But again...your GP should be treating you for B12 deficency with neurological symptoms - intensive B12 injections.
So...highlight and collect / collage evidence from the links above and take to your GP for discussion. And most of all, don't give up...and get copies of your blood test results - all may not be as 'normal' as your GP appears to think.
Good luck š
P.s. Has your GP checked your ferritin levels - levels that are not in the mid to upper range can cause iron deficency anaemia.
And folate levels? Folate needed to process B12 properly. Should be in upper third of reference range.
Has she tested anti-IF antibodies (test for PA). If postive definately PA: if negative only 50% accurate - you coild still have PA (called antibody negative PA - most doctors have never heard of this. Check the diagnostic flowchart in the reply above for more information about how, your GP should proceed in terms of testing and diagnosis.
Just seen your last post/ reply. Thank you again. i sent my prev post when hadn't seen yours. I am certainly no typist
No hasn't tested IF antibodies. Would that be the same as Intrinsic Factor test or is the Intrinsic Factor antibodies another test. Not had either way.
My folate yesterday's results was Serum Folate 24.88 nmol/L (range 8.83 - 60.8) So not in top third. My previous folate in November was a different NHS lab measurement 10.7 ug/L
(range 4.6 - 18.7) I referred to Folate when had my appointment and her opinion is folate fluctuates with meals eaten around the test.
Yes, I always say that they don't join the dots.
I had previously asked for serum iron test etc because of high ferritin to understand what was going on - it was me that brought up anaemia of inflammation. My results were marked as normal by a different GP in the practice - obviously definitely not looking at the full picture.
I have blood test result print outs since 2011
will post then - thank you
The trouble is the length of time they give you to discuss in an appointment. I usually only go to look at blood test requests based on previous years results and then I book a double appointment - but still they are stressing after 20mins.
I was wondering if GP would look at info before the appointment but somehow can't see that. I cannot even get my head around the appointment system because unless it is an emergency that morning it is a min of 5weeks waiting time. My appointment to review with GP what blood tests could be requested in Sept, I was told that it was a 3 months wait unless I saw a registrar (explained as a doctor in training who had taken a min of 1 med exam)
Just fortunate that in Jan they phoned me back with a cancellation because I had been assertive.
Thanks for all your further info and time
I just Googled RDW test - that seems an appropriate test - surely, considering, and IFantibodies x
RDW not a available as individual test. Usually comes as part of FBC suite of tests. Ask GP to make sure included in next one. Remember, not meaningful on its own - needs to be read over and against all results in the FBC suite.
Sorry Foggyme - the morning after the night before! when I got my results that I had been banking on - and so stressed to the hilt.
You are so knowledgeable. Very interested in your info about B6
I have checked my B vit supplement
Premier Research Labs Max B ND is a probiotic - fermented vitamin B complex.
Has B6 3mg D Value 150%
Thiamin B1 1mg 67%
Riboflavin B2 1.6mg 94% including Riboflavin (R-S-P)
Niacin B3 30mg 150% as Niacinamide
Folate 1000mcg 250% as Folinic Acid
B12 263mcg 4383%
Biotin 334mcg 111%
B5 3.3mg 33% Pantethenic Acid
Fermented Probiotic Media 18mg
which is organic brown rice protein, 5- Ribonucleotides, Betain Anhydrous, N Acetyl L-Cysteine, Magnesium Sulphate, Manganese Sulphate, fermented in a probiotic culture.
I had thought that this was the best that I could get but see that has way more B6 than could be appropriate possibly
I however had only taken a month or so prior to last April tests and it was what managed to get me up to 551 the highest ever. Just a few wks without before the test so obv not long enough and so may have been a false result I now gather.
Not being well informed, I had thought that was a good range and stopped supplementing. Previously I had taken a B12 alone in a sugar powder from the Netherlands - just B12 and sugar no unnecessary ingredients but they stopped shipping which is why I changed to a complex.
It wasn't until after symptoms started this Jan that I took a couple of doses again from the old bottle - that has to be kept in the fridge - didn't even know if viable still. So is it likely that high B6 from 8 months before would have sparked symptoms?
I had more recently started taking Oceans Alive a marine phytoplankton for it's bioavailable plant derived mineral content, I also had thought it may help my rising TSH re being marine, so good iodine content. My tests show no abnormal thyroid antibodies.
I take a turmeric supplement to tackle inflammation and have taken serrapeptase consistently for 12months at a higher dose in order to bring my fibrinogen levels down (which were off the chart high a different problem!) and with this have got my fibrinogen and inflammation marker CRP down into normal. I stopped the serrapeptase just days before the symptoms started as I ran out of and was over Christmas and I thought I would take a break from when symptoms of burning mouth etc started altho it is supposed to be beneficial in any form of neuropathy/plaque/inflammation.
Sorry so long and complicated.
I had thought that if I could not get B12 injections, dosing up on this Fermented - Probiotic B Complex would be the next best thing as I obviously absorb that.
So I had better experiment and just take a B12 on its own and see if symptoms go, then I will know it is the B6, that is if I do not get anywhere with my GP.
Folate dose is high - may be to high if you don't need it - folate over supplementation can cause side effects. Likewise niacin. Not enough time to look at the rest but - consider - you may be taking things your body doesn't actually need.
Some people with B12 deficency do need to take B vitamins, but not e wry odd needs them. And too much can be as bad (or worse) than too little.
What you really need is B12 for B12 deficient - which is consistently being hidden and masked by oral B12 supplements.
Oral B12 supplements not recommended for B12 deficency with neurological symptoms - which you have. You may absorb some B12 (which you have) but not enough for effective neurological repair.
Suggest your continue with GP and neurologist and keep fighting to get treatment for B12 deficency.
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