You are extremely low in range for B12, probably the bottom of the range. We should have around 1,000 for us to be at optimum.
Before you supplement on your own and as your doctor obviously has no knowledge of the importance of B12 ask him to test the intrinsic factor to exclude you have pernicious anaemia because tell him you are going to supplement yourself with B12 to bring it up to around 1,000. He might tell you that's not necessary but tell him you don't want neurological damage which might not be reversed. You also cannot overdose as excess is excreted. If you do supplement (after a P.A test) it must be methylcobalamin B12 - sublingual is best as it goes into your bloodstream and bypasses your stomach.
Also if he hasn't tested Vitamin D he must do that too.
To be honest I don't think my doctor even knows what b12 is. He told me to eat lots of broccoli!
He did say if it's still low after this test he was going to start me on injections.
The nurse told me it's my iron stores and if it does come back low again it'll just be a couple of injections to get it back up and that's all I'll need.
Yes. Change your doctor. This one is going to kill you!
Seriously, though, he is so lacking in basic knowledge, he's a public danger. So is the nurse if she thinks B12 is the same as iron and that two injections will put you right! Oh dear!
So, I really, really think you ought to push for an intrinsic factor test, as Shaws said. The little that your B12 has risen is negligable. It's still dangerously low. And you must know if you have Pernicious Anemia. So, go down to the surgery, and start throwing the plant pots around until you get the test! (Only kidding, but you know what I mean.)
It's terrible, isn't it, trying to get an appointment. I Don't live in England, but I know the struggle my brother has.
So, when you do get an appointment, I would urge you to make B12 your top priority, because with that low level, a lot of permenant dammage can be done.
Hope your new doctor works out for you! Well done for changing.
I'm not sure what tests you need to rule out PA, but I'd either supplement with 5000iu a day methylcobalamin or try to get a private doc to prescribe injections. I believe you can do them yourself, with training. The HU Pernicious Anaemia Society community would be able to help.
I always wonder why Docs seem to think that things will change on their own if you change nothing. To get more B12 you'd have to either
supplement
eat loads of liver
change your gut bacteria
or all three. If you don't change anything, why would you B12 change? Of course you might have an unknown B12 eating parasite/bacterium which just spontaneously dies ...
He's probably hoping you won't come back or that a small natural fluctuation will make things look better and preserve his budget.
Are you having neurological symptoms? Tingling, numbness or pain in your hands or feet, shortness of breath, memory problems, palpitations, balance issues, brain fog, depression, insomnia are some. Other symptoms include hair loss, outer half of eyebrows disappear, enlarged tongue, fatigue, ridges on fingernails or toenails, fingernail moons disappear, bruise easily.
I'm assuming you are in the UK, where the units B12 is measured in are ng/L (which is equivalent to pg/mL used in the US, where I live). If the units were nmol/L then multiply your B12 value by 1.355 to convert it to the US/UK units which are what people on this forum are most familiar with.
The book by Sally Pacholok, "Could It Be B12? An Epidemic of Misdiagnosis" says 200 - 450 is the gray area where neurological symptoms are known to occur. B12 levels below 450 should be investigated for the cause and get treated. Your B12 is below that minimum.
If you are in the UK you can show your doctor the BNF treatment guidance for B12 deficiency. It is only accessible from within the UK so perhaps someone on this list can provide the link.
Yes I have a lot of the symptoms, all the nail ones, shortness of breath, dizzy wobbly rather than dizzy fainty, all the memory stuff and tingling painful hands and feet.
My husband has low b vitamin and the medical people said he had to get shots for 5 weeks and then they will give him another blood test. I think he is almost done with the shots...hope this helps somehow
I urge you, or your husband, to go over to the Pernicious Anaemia forum here on HU.
Re-testing B12 after loading shots will always show a high level. And that level will mean nothing. But some medics will say "You are OK now" and not offer any more shots, ever.
If he needed loading shots, he almost certainly will need regular shots forever. Many find that the standard frequency of every three months isn't sufficient.
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