I have had painful feet and tingling since December last year which are worrying me a bit. I have many other symptoms, some going back 9 years which are on my profile.
Any insights will be greatly appreciated.
I had bloods taken in February at my GPs.
B12 354 ng/L (130-1100) (23%through range)
Folate 5.1 ug/L (2.7-15) (19.5% through range)
Ferritin 33ug/L (23-300) (3.6%)
Vitamin D 21 nmol/L (50-120) Deficient
In August I had a private test
B12 277 pmol/L (145-300 = insufficient) (I think this is 375ng/L so 25%?)
Folate 16.2 nmol/L (8.83-60.8) (14%)
Ferritin 59.5 ug/L (13-150) (34%)
Vitamin D 163 nmol/L (50-175) (90%, after initial treatment and sun)
As B12 was insufficient I had another private test for active B12 this week
Active B12 98 pmol/L (37.5-188) (40%)
Folate 10.1 nmol/L (8.83-60.8) (2.5%)
Does the active B12 result mean that I only use 40% of my total B12, for instance 40% of 354 (Feb result) which would equal 141 or am I barking up the wrong tree?
My B12 results going back to 2011 have ranged from 11-23% through the range.
My diet is very good.
Thanks to this forum and the thyroid forum, I believe I might eventually find out what is wrong with me!
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Sa-ja-ca
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When they say the range is 130 t o1100 it doesn't mean that they expect normal people to have a B12 value somewhere in that range. It means that they cannot measure anything above 1100. So you cannot use that to determine how high you are in the range. If they bought a new, more sensitive machine, the top of that range might go up from 1100 to 6000, but your levels wouldn't suddenly drop from 23% to 8%.
February you are well above double the bottom of the rage. August, almost double. Active B12 well, above double.
In normal people active B12 represents about 20% of the total B12. So your result of 98 is higher than expected.
So it really doesn't looks as if you are B12 deficient. Have you done an MMA test? That would show a possible deficiency.
Better still, ask to be referred to a neurologist to figure out why your feet are painful and tingling. If it's peripheral neuropathy there are about 80 other possible causes as well as B12.
If you wouldn’t mind, I need some clarification fbirder: I thought the measurement for “active B12 was indirect :high MMA and/or homocysteine , but now I see that there is actually a special test called “active B12” Are there other names for the Active B12 test ? I’m in the states, so we may have different terms. My situation is different in that my B12 level was low when not taking oral B12, but very high when taking it (>2000) no difference in symptoms. The only blood test that was taken that indicated a problem was Mean corpuscular volume of 105 on one test and 102 on another, both of those with B12 over 2,000.
I eat grass-fed beef, pastured polyurethane, fish eggs so it was not a diet cause.
I’m doing incredibly well on jabs every four days which I order, thanks to this site, from Germany.
I wouldn’t stop the jabs to try more testing to “prove” that I need them as one doctor suggested. I have an advanced practice nurse who is at least listening to me a bit, but she sends me for a variety of expensive tests-trying to find another reason for the B12 symptoms.
I worry that I may be “up the creek without a paddle” one day if we cannot order B12 from outside the states without a prescription.
The 'Active' B12 test can also be called a holotranscobalamin test. I believe it's not very common in the USA because it costs more and doesn't really provide useful information.
If your B12 vas low without supplements and sky high with them it means that you can absorb oral B12.
Thank you. That’s the conundrum, Dramatic improvement in symptoms with injections (fatigue, pins and needles in extremities) and signs( MCV high ) That’s why I’m looking for answers such as “ functional B12 or intracellular B12 to show the docs here that injections are warranted
There is only one piece of evidence the doc should need - "Dramatic improvement in symptoms with injections"
Doc might say it's placebo effect. The correct response to that is - "Who cares if it is the placebo effect if it works? Having injections can't hurt."
As fbirder says it may not be B12, but given family history, it's may be worth getting the MMA test and getting further referrals. Also you can test your response to oral medication - that's what they did in the old days - better still a patch. If you get a positive response you know the answer, no response you definitely need to pursue other avenues. However and it's a big one - if you test yourself first with patches, as I did, your results will never be convincing for your GP!
Thanks ClareP5. I was going to buy some high strength supplements but thinking about it, I think I have low stomach acid (I am still experimenting with betaine hcl with pepsin and have taken 2600 mg so far with no effects) so patches will be better to try. It may be the answer! It’s such a slow process when your GP hasn’t a clue. At least I have recently had CFS ruled out and have been referred to a rheumatologist and if they can’t help I’m sure they’ll refer me to an Endo or a neuro maybe!
Unless you put an electric current across the patch and the skin, or the patch consists of lots of small needles filled with B12, experiments show that it is not absorbed.
Mine was in that range (300 dropping to mid 200) with supplements and I was exhausted. I was told it was definitely not b12 and paid for private treatment. My fatigue has improved massively and I no longer need naps in the day. Finger and toe numbness are also much improved. I know Dr. Chandry treats symptoms and not test results. He has a free book available to download on his website.
He was just threatened with being struck off. He is no longer allowed to prescribe B12 injections willy nilly. The problem wasn't that he was prescribing to 'treat the symptoms' but that he was prescribing to treat any symptom. Get in contact because you felt tired after running a marathon - get B12 injections. Get in contact because your doctor had told you that you had MS and you heard that B12 might help - get told that you do not have MS and need B12 injections. Phone up and say that your big toe itches - get B12 injections.
Fair enough. It is difficult for those of us who feel that b12 is helpful and are ignored by GPs. Constantly exhausted, 2-3 hour naps during day at worst, digestive issues, heartburn, tingling on one side of body and doctor just shrugs and says you’re fine. Also salons and wellness centre can give b12 under ‘wellness’ and Don’t require prescription.
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Result of 'active B12 test'
Results support please
Blood results show low B12 - what to do next
