My B12 hypo

[Gambit62]

Have been meaning to write something since it happened but last Wednesday evening I headed out to a bowls match on foot - just the easiest way to get to that ground and realised that I hadn't had any B12 since the morning and I hadn't got any with me but thought it would be okay.

During the match, towards the end, I started to find noise and movements on the other rinks really distracting and was starting to have difficulties concentrating but when I came off the rink I was starting to feel quite out of it. It took me ages to take my shoes off and head into the club house and then I was feeling all wobbly on my feet - should really have made my excuses and gone home at that point but didn't. Anyway, had some food but it was like being there - everyone around me and not able to really distinguish what conversation was which - just everything shouting at me as we ate. Offered my opposite number a drink and went up to the bar to collect it and the bar man asked me if I was okay because I looked really tired - muttered something about having the B12 equivalent of a hypo ... sat for a few minutes and then realised that if I didn't go then then I wasn't going to make it to bed ... so despite protests from everyone else, and being noticeably wobbly on my feet I just went. Actually getting outside and walking up the lane was quite nice after the cacophony of the clubhouse but it was a bit difficult to keep moving - though having the counterweight of my bowls bag meant that I could use my weight a bit.

Got in and made it up the stairs - by this point I was feeling very very unstable on the feet so it was leaning with a hand on the wall or some surface to make sure I wasn't falling over as I went from bathroom to bedroom and then got into bed, and took some of the B12 I keep by the bed ... and that was as much as I remember.

Slept quite well and was okay the next morning but it was quite an eye-opener - being a while since I let my levels get that low. Friend commented that he was surprised by how quickly it all came on.

Needless to say I'm definitely going to make sure that I have my nasal spray with me for bowls in the future - usually do - this was first time I hadn't because I didn't have a skirt with pockets in it on this time ...

[deniseinmilden]

Hi Gambit!

Thank you for posting this - I saw it yesterday and was very grateful as I consider you to be an experienced pro at managing your Functional B12d and it made me feel better about my slightly erratic steps in learning to being well myself.

Saying that, obviously I'm really sorry that you went through it: it's horrible at the time and quite scary to know feeling well is so finely balanced, isn't it?

I'm lucky that I get micropimple acne if I manage to get my system fully loaded but it's then hard to gauge how much less I can get away with so my face doesn't resemble a pizza while not dipping too low either.

I can't comprehend just how lucky I am that you are here: you have unquestionably saved my life and livelihood.

How often do you need to inject? Are you every day like me?

How are things with your Mum now?

Very best wishes, Denise

[Gambit62 Administrator in reply to deniseinmilden]

Tend to use nasal spray more than inject - but at the moment - because of all the stress I'm doing daily - normally I'd be every other day - but at the same time I get through a lot of nasal spray - probably taking 5mg + a day at the moment.

They have finished treating ear - so waiting for bed in cottage hospital. Don't know what is happening about cancer. No real improvement in cognitive abilities and don't think they did any blood tests but at least it should be possible to get her to GP and get results of bloods from a few weeks ago if she is nearer home. Worry is that she'll just wander out of the cottage hospital and head home the way things are at the moment.

[Frodo]

How scary. Hope you're ok. It seems to demonstrate that getting levels up doesn't mean the B12 stays in your system for very long, contrary to what people are being advised by medics. I've had similar things happen having set out on a walk feeling fine.

[Gambit62 Administrator in reply to Frodo]

Think my problem is battling against functional deficiency caused by my immune system ... and probably as the immune system gets stronger the levels of B12 I need have increased.

Really wish that GPs were more interested and aware of B12 and things like functional deficiency ... as well as the fact that there isn't any real scientific evidence for maintenance shots being 2/3 months which affects an awful lot more people.

[Frodo in reply to Gambit62]

I agree. And it is so difficult for the majority of us to uncover why we are deficient that it isn't really possible to provide 'evidence'. From reading up, it seems there are potentially multiple ways to become deficient ranging from diet, to auto immune, to several genetic malfunctions, to medication interaction.

What I wanted to add is that although I'm sure you know all there is to know about supplements, I've recently found that if my weird headachey, muscle-spasmy, weak, hard-to-breathe symptoms begin to recur despite B12, I seem to be able to help them to an extent by taking one or two sachets of spatone iron in juice, and a magnesium (citrate) capsule (plus B12 spray).

It doesn't mean that will help you or anyone else necessarily, but I just mention it in case.

[Gambit62 Administrator in reply to Frodo]

Thanks - may main battle has actually been getting my B6 levels right as otherwise I get horrendous migraines with really bad gut spasms. I still get the migraines (hormonal) but at least I'm not having the gut spasms which is the most debilitating thing for me.

I've supplemented iron and iodine (sea kelp) for years ... and use glucosamine with chondroitin because I used to have really weak ankles and the chondroitin really seems to have helped with that. I also get through high amounts of folic acid - above EU recommended upper limit but that seems to impact on B6 problems if I use less, and I don't have any of the real risk factors for folic acid, so calculated risk.

Recently started using adenosyl - that seems to be really good for my ankles so may be the problems there were in part due to B12.

[Leilanilea in reply to Gambit62]

Hello, Could you please tell me whether you take Folic Acid, or Folate? Thank you

[Gambit62 Administrator in reply to Leilanilea]

I take folic acid - it doesn't cause me any problems and I'm not in a risk group - no epilepsy and I don't have a problem with converting to methylated forms

[LadyNZ in reply to Gambit62]

Hi Gambit...You will know that I'm new to the group so I'm not sure of your complete history, but you mentioned having bad gut spasms and migraines. Are you gluten free or have you considered going gluten free, because gluten is infamous for causing gut disturbances and migraines. All my life I suffered from IBS and every doctor I ever saw told me it was caused by my diabetes. Well well. Went gluten free 5 years ago, all gut and bowel problems (at that time) sorted. Current problems are caused by low stomach acid. i wish you well, Gambit62. You're a valuable member of this community with the wealth of information you have.

[Gambit62 Administrator in reply to LadyNZ]

Have thought about going gluten free but never actually done it for more than a short while.. The migraines are genuinely triggered by hormonal changes ... and for many years were one way of knowing where I was in my cycle. B6 has sorted out the gut spasms - they come back if I try reducing the dose. The migraines - in terms of headache etc are a lot more manageable as well with B6 supplementation as well.

[Sleepybunny]

Sorry to hear you had a hard time at your bowls match.

Hope you're okay now.