GP won't help

[Pollyerrington]

Hi everyone, I'new to this forum but not to healthunlocked

I'm really struggling right now.

I broke my leg in 3 places back in aug and have been in and out of hospital having surgery.

I now have restless legs which I get every single night.

Prior to the accident, a blood test showed B12 as 400 (can't find range but it was something like 200-900) I also had low ferritin at 15, but after supplements I've got it to 64 (still too low in my opinion)

My GP says my B12 is fine and won't acknowledge that the NHS test shows both active and inactive B12.

I have all the symptoms. I am so tired! have brain fog and so many other issues. I also have complex regional pain syndrome resulting from the accident and wonder if low B12 has played a part as it's nerve related.

I'd like to know what people think.

I'm due to see the neurology dept at the hospital next week, and I want to ask for lots of tests.

Can I get B12 injections outside of NHS and what is the protocol, and more importantly the cost!

Any help much appreciated. Thanks

[clivealive Forum Support]

Hi Pollyerrington did you have nitrous oxide as an anaesthetic during your operations as this will severely deplete or eliminate your B12?

[Pollyerrington in reply to clivealive]

All I know is I was put under general anaesthetic (twice in 3 months). I think perhaps it was called Propofol.

Thanks for the advice - I'll look into it!

[fbirder]

Assuming you have a normal proportion of inactive to active B12, the fact that the serum test measures both is irrelevant as the range takes that into account.

[Gambit62 Administrator]

many of the symptoms of B12 can also be caused by other conditions, eg iron deficiency.

Red blood cells live for about 4 months and are only replaced as they die so correcting an anaemia does take a few months.

both B12 serum and active B12 suffer from the common issue that they look at what is floating around in your blood and not at how it is being used - there are other tests that can help to clarify - MMA and homocysteine - but these may not be available on the NHS - though you can get them done privately, eg at St Thomas in London.

a result of 400 is starting to get to the point where an underlying B12 deficiency is unlikely though that doesn't rule it out.

as clivealive says nitrous oxide may have played a part.

Have you put together a list of symptoms and how far back they go - I'd be expecting the B12 symptoms to predate the accident though they might have been quite mild

pernicious-anaemia-society....

I was diagnosed as B12 deficient as a result of a fall in which I broke my ankle - and things actually got a lot worse for me with the start of the standard treatment - sometimes the high doses associated with treating a B12 deficiency can kick off other responses that can be problematic. I would really recommend exploring more on the path to getting a clear diagnosis of an absorption problem before jumping to injections - though it's actually quite easy to source injectable B12 from outside the UK and inject yourself - but I wouldn't recommend that for the first injection. There are also other things that you can try before resorting to self injecting - high dose oral, nasal sprays and some even find skin patches work for them. B12 isn't expensive - and a phial that would be used as the normal dose for a single treatment costs less than £1.

[Pollyerrington in reply to Gambit62]

Hi, the 400 B12 level was a couple of months before the surgeries, and I was also taking a B12 supplement at the time.

Symptoms have been going on for a good couple of years, but have gotten a lot worse since my accident.

Thanks for the advice

[Gambit62 Administrator in reply to Pollyerrington]

what dose of supplement are you/were you taking?

A full blown B12 deficiency can take years to develop after an absorption problem starts but an event like use of nitrous oxide as an anaesthetic could have oxidised your remaining B12 causing a step-change in the degree to which you are deficient that supplementation may no longer be keeping in check.

[Pollyerrington in reply to Gambit62]

Thanks.

I was on Jarrow Methylcobalamin B12, 5000mcg.

One a day.

[Gambit62 Administrator in reply to Pollyerrington]

that's a really high dose and would probably have raised your levels really high if you didn't have an absorption problem. If you really can't get your GP to listen then I would suggest that you try going back on that dose and see if anything improves.

You might also want to think about looking at the amount of folate in your diet and consider upping or supplementing.

[Pollyerrington in reply to Gambit62]

Thanks. I've just found my folate results. They are at the higher end of the range:

13.1 ug/l (4.6-18.7)

[Gambit62 Administrator in reply to Pollyerrington]

B12 and folate work together so would be good to work to keep it that way.

[Pollyerrington in reply to Gambit62]

I'm not sure what that means in context to my situation- sorry if I'm being thick.

[Gambit62 Administrator in reply to Pollyerrington]

your folate levels may be good now but you will use up folate processing B12 so they could drop very easily and if they drop too low this would mean that your body would not be able to process B12 anymore - one reason why there is a huge overlap between symptoms of B12 and symptoms of folate deficiency.