B12. Defiancy

[Cakes7]

Hi, I have a active b12 of 133, pins Neddles, headaches, brain fog, double vision, ache all over insomnia, but my doctor doesn't seem interested in b12 deficiency. Say I have Migraines, should I seek a second option

[be123]

Hello! I would definitely seek a second opinion, and maybe take a print out with all of the b12 deficiency symptoms and read the ones out that you are suffering from. Nothing wrong in telling a little fib and saying that you have been advised by a Nurse to ask about pernicious anaemia, as that's exactly what happened with me and then my GP took me seriously! I hope you get à diagnosis and start feeling better soon x

[Cakes7 in reply to be123]

5years and counting think I'm going mad

[Gambit62 Administrator]

do you mean active B12 or serum B12 - 133 is actually quite a high result for active B12 test.

Would be useful if you could post exact results - including Full blood count if done, iron and folate levels.

[Cakes7 in reply to Gambit62]

Hi, just looked, serum is 133, folate 5,54 iron 74. Would post but not mastered that skill yet. Thanks for replying. hope this helps

[Gambit62 Administrator in reply to Cakes7]

thanks - there are two tests - active B12 and serum B12 - active B12 looks at just the amounts of B12 in your blood that is bound to proteins that make it available to your cells - serum B12 looks at all the B12 in your blood - so the two tests have quite different ranges.

it would also help to have units and ranges for the results as there are two commonly used units for serum B12 - and ranges can also be different for different machines and labs. However, your results would be on the low side of the normal range if not below on both scales.

Was the test you had done a private one or one that your Doctor did.

Ideally you should be working with your doctor and they should be treating you for B12 deficiency. Assuming that your diet is good that would mean injections with B12 - if you are a vegan and or don't eat much meat/fish/dairy/egg then it could be dietary and first thing to try be some oral supplements - 50mcg B12 - though these won't help if you have an absorption problem.

If it is an absorption problem then they should check to see what it is - could be PA (note test for that gives false negatives 40-60% of time), coeliacs, h pylori infection (treatable), or a drug interaction.

[Cakes7 in reply to Gambit62]

Hi, thanks again, been to doctors today, have been prescribed cyanocobalamin tablets but not injection that I asked for he was not really interested. I showed them my B 12 levels private. they said they matched the ones I had done a year ago at doctors shows deficiency So why wasn't I given treatment then!!!!! Anyway are these any good, or just given to me to shut me up.

[Gambit62 Administrator in reply to Cakes7]

If your B12 deficiency isn't caused by diet then they are not going to have any impact as you would really need doses larger than 100% of RDA (>250mcg) to be able to stand chance of getting enough from passive absorption.

What is your diet like in terms of B12.

[Cakes7 in reply to Gambit62]

Fine, I don't eat red meet or chicken but eat, fish and eggs and dairy. All the time. Looks like this is going to be along journey. A question may be for the future if nothing improves, would you ever recommend self medication of injection.

[Gambit62 Administrator in reply to Cakes7]

best not to try self medication until you have tried exhausting every other avenue as it makes getting a formal diagnosis very difficult and can sometimes cause other problems.

Think the next step would be to write to your GP and point out that your diet is quite rich in B12 making it likely that you have an absorption problem - there are a number of possibilities - including PA, Coeliacs (which is potentially manageable), h pylori (which is treatable) and drug interactions - or even a combination. The normal treatment in the case of an absorption problem is loading shots followed by maintenance shots if the problem isn't treatable in another way.

Note: the test for PA - IFA is prone to false negatives 40-60% of time so a negative result would NOT rule out PA

[Cakes7]

Thank you

[Hidden]

Serum 133 is low, I can't see that is within range. If you look st your blood results there should be figures in brackets after your result which give the range your result should be in.

I'd print off a tick list of B12 symptoms and tick all those you have. I didn't realise I had so many--- I'd only described the 3 worst ones to the GP.

[4101]

I am very new at understanding pernicious anemia even though I have been diagnosed for several years. My suggestion would be to get a second opinion be armed with all the information you can when you see the second doctor just like the others have suggested. I did not even know that there was a difference between serum and active B12 blood test results. This forum is so very educational for me.

[Cakes7 in reply to 4101]

Thanks to everyone for their responses, this is so helpful. It's good to now that I am not going mad, but not good to hear that so many other people suffer in silence as well.

[Frodo]

Yes you should seek a second opinion. Unfortunately once you have a diagnosis of migraine everything wrong with you is attributed to it sometimes mistakenly. Some of my "migraine" symptoms went away when I gave up gluten, some more went away when I started B12, and yet more when I had a wisdom tooth treated. I also had improvement from stopping NSAIDs. All of the symptoms were said by medical professionals, including the dentist, to be down to migraine (which is "not serious"). As far as I can tell, it's pretty impossible to get a complete diagnosis of what is going on in these situations. You have to try and work it out for yourself and try and find a GP who is prepared to listen.