Hello fellow B12 crack-wh*res. I went to my doctor today, armed with the names of two simple tests: MMA & Homocysteine.That was all I wanted, to be given two simple tests. Even one, MMA, would have made me very happy. I told my doctor I thought I might have something called Functional B12 Deficiency; was immediately wary when I saw ‘the expression’ on her face, the one that says ‘I’m jumping in right about NOW’ and then she jumped in. God forbid you actually get a chance to tell them what the problem is before they decide they know exactly what the problem is, and you’re not getting it. Now leave.
I couldn’t possibly have B12 deficiency because I get B12 injections once every 4 weeks, she announced, pointing at the computer and almost shouting AHA! In fact, her face said, if she had her way I wouldn’t be getting that much, because really they were just indulging me.
I had to interrupt her back - she loved that - by explaining what Functional Deficiency was and that me getting monthly injections wasn’t really relevant if the B12 couldn’t get where it was needed. When I got to the point of explaining how the B12 gets through the stomach wall okay and into the blood but can’t get from the blood to the cells she developed the other face: ‘Oh, this is a fairy story you made up from the interwebs’.
So then I had to explain why the tests, neither of which she’d ever heard of, were sound and could answer the question definitively; I didn’t just want them because I thought it was a good way of wasting her time and NHS money. She told me she’d have to consult The Biochemist (my doctors always bring up The Biochemist when they don’t know about tests, or don’t really want to give you them). I love that a biochemist who has never met me, knows nothing about my medical history or my symptoms gets to decide whether I get treatment or not.
After all that audacity I was punished by having my medications withheld. These medications are anti-convulsants, strong and essential for my (currently recurring; hence my desperation) neurological condition of Trigeminal Neuralgia. My doctor used the excuse that I had once (while overdosed on water due to cystitis) landed in hospital with low blood sodium. Yes, the drugs adversely affected my blood sodium but hospital was ONCE in 18 months and under extreme circumstances. She wasn’t interested; I had to be made to pay for daring to bring in my mad addiction for more B12, and subjecting her to the terrible humiliation of not knowing something.
The real irony of all this is I DON'T expect my doctor to know everything. She’s a human being, not a walking encyclopaedia. What I DO expect (oh how naive) is that she might listen and not behave as if I am a crazed loon off the street doing anything – ANYTHING I tell you! – to get more of that delicious B12.
I brought her a list of 37 symptoms, something I NEVER do (what’s the point?), but I am sick of all these problems never being mentioned because the docs don’t have the time to hear you out, or even read a page (I kept it to one page long). I’ve had tendonitis – incapacitating tendonitis – in both ankles for two years. Two YEARS, and I never bring it up, never seek treatment, never connect it to my TN or anything else because hey, it could be caused by anything. And what does she say on reading these symptoms? “These could be caused by anything. Or nothing. They may not even be connected.”
NO. You don’t SAY. That’s never occurred to me. Gosh, I am so glad you are here to keep me straight, infer I am neurotic, behave as if I am trying to extract unfair amounts of B12 from the NHS, probably by stealing it from babies, AND having the audacity to invent a condition, with fake tests, called Functional B12 Deficiency, which I definitely don’t have because I’m already getting B12 injections. Praise Jesus!
I absolutely might not have Functional B12 Deficiency. No-one is a bigger sceptic than me, but all I am asking for is the damn tests to find out. Why is that so terrible? Why does it have all this drama attached? If she was in my place, with a condition that caused severe electric shock pain to the face, that’s incurable, that is treated by horrible drugs, that is rare and no-one knows anything about, and then on top of this she develops a numb leg and face, crawling sensations on her scalp, tendonitis all over her body (high Homocysteine causes collagen problems so this possible connection isn’t as weird as it sounds), plus about 20 more maddening symptoms, would she not want the damn tests?
So at the end of this ridiculous debacle I am awaiting a phone call after The Biochemist decides my fate. And what do I do if he turns me down? God knows, because I don’t.
Written by
Chancery
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One of my aunts had TN. May I just say that given the horrors of TN, you're doing well to keep your venting so nicely judged!
And The Biochemist sounds like an plausible name for a Bond villain.
I'm hugely entertained at the notion that your GP might think there's a network of B12 dens throughout the UK where people flick IM or SQ sites for their regular fix of B12, pausing on an occasional basis to swallow some folic acid tab, drop a tab of C or some other nutritional supplement thrill chaser...
Hell yes, I'm going out to buy some fishnets, a short fake fur coat and some large gold hoop earrings tomorrow. After taking some iron for my Restless Leg Syndrome problems, I feel just the part.
Don't know if this will help you but I've stopped the restless leg thing ( won't tempt fate saying I've cured it!) with Magnesium oil spray. Bought the " goodnight" version on Amazon and use it on the soles of my feet before I go to bed. Sleep has improved and no twitchy legs. Just don't spray it on legs you shaved a few hours earlier.......stings.
Thanks for that tip, Hollyberry, I've never heard of that one. I'm using 'Gentle Iron' currently and I find it effective. Truthfully, a cheapie one bought from Lidls or Aldis also did the trick, but they were REALLY constipating and I already have enough issues with that! But I shall definitely keep your remedy on tap for when my iron runs out, in case its better. It's certainly a little safer since you can't overdose on Magnesium spray!
Chancery, I feel your pain your in good company!! but I also enjoyed your commentary and smiled!!! We do NEED to smile. I was surprised that you didn't also report that your doctor mention to you (like mine did recently) that you 'were now here half an hour and that she had other patients to see'??? I"m lucky that the nurses in my medical centre (in S. Ireland) are willing to believe me when I say I need another injection. After all one nurse said to me recently "It's not as if you're looking for morphine injections it's B12". I wish you luck with your next phone call!!
Ah, Bengie, if only we could convince them that B12 isn't an addictive drug and that we're not all madly seeking our next high. I'd love to know who started the (convenient but insane) theory that B12 was addictive. I'd like to dig them up and shoot them. Twice.
You'd think, given all the top-rate expensive education that doctors are given, that if they noticed that B12 patients were always begging for more it might mean they WEREN'T GETTING ENOUGH, rather than it was addictive. Talk about twisting science to make it fit.
but they don't get educated about B12 in College as it's considered a vitamin with all the other vitamins and glossed over in half a day. They have much more important stuff to learn, but listening isn't one of them? lol! Oh how I would LOVE not to have injections for life but that's life. Having got encouragement from people on this site I'm going down the road of SI next week. I got my first demonstration on how and where to inject yesterday and next Friday the nurse will repeat instructions as I was shocked yesterday by the size of the needle going into my thigh so I have forgotten all I was supposed to have learnt! lol! Oh, my pins & needles are back so I'm going to bed. Night Chancery
Ah, you're a braver man than me, Bengie, I am terrified of having to self-inject, but if it comes to that I will do it. Or maybe I'll just use sublinguals...
LOL Chancery!!! I'm on a 'high' today as the nurse told me to inject myself TODAY and I did it. She gave me injections, needles, wipes and a 'Sharpak 18' to dispose needles and told me I could be better than any nurses at it???? Oh, and she gave me 'Water for injections' to practice taking 1ml out of it and told me to inject into an orange. I'll never look at oranges in the same way ever again!!! I didn't hurt myself either. Oh, and by the way I'm 68 and female! lol! Jill
Of course, you're a woman, Bengie - didn't doubt it for an instant. Only a woman would be brave enough to stick a needle into herself repeatedly!
So why have they given you permission to inject yourself, B? I know when I suggested it (in tragic desperation) my doc looked so unsettled I might as well have asked him to help me shoot up heroin. Are you one of the lucky ones who is being given frequent injections, or did you just make such a nuisance of yourself they're giving you them to make you go away? If so, good for you - you're my kind of gal!
I went in 7 weeks ago for the FIRST time with a list of symptoms I'd never had before: memory loss, pins & needles, Brain fog, exhaustion (I'd always had), Shortness of Breath, headache etc you know yourself and said what is wrong with me as I wasn't sick? I got the 'eyes up' and "I don't know" I wonder says I is it my 27 year old PA? Still didn't know. "Can I have a memory test?" Yes. Not great. Your B12 is 330 but I never had these symptoms before. Go home. Went into nurse next day Fri got my injection. Monday morning phone call from Doctor "Come in twice a week for 4 weeks and decide yourself if you need more after that". I'd won! I'm much better now and memory better. Doctor did ask me why I wanted to SI when I went in to her last Tuesday to which I replied I have to come in here every three weeks for the rest of my life. I've to make an appointment and sometimes wait an hour and the rest is history. It went a bit TOOOO quickly for me but I DID IT today and very pleased with myself. It's VERY EASY and that's from a coward but it really is very easy with the right needle. And when the time is right and your desperate enough you will do it just as easily, but the time has to be right?
If I hadn't come on this site in desperation to educate myself after getting the "eyes up" seven weeks ago and feeling labelled 'neurotic' by my doctor who didn't seem to know much about B12, I took control of my own life. I am lucky in that I always have/HAD NOW (lol) great nurses that gave me my injection whenever I needed it not when the calendar said it. As one nurse said; "It's not morphine your looking for". Now they don't have to look at my ugly BUTT ever again?
p.s. I think you might be right about the nuisance bit in that I was asserting myself for the first time and not crawling under a bush and wasn't going to go away. Now I don't know when to stop the two a week and go back to my usual 3 week injection. Perhaps I'm also lucky that I live in Ireland and attend a young female doctor with modern ideas. Still doesn't know much about PA though?? Night now.
You sound like a tenacious little terrier. I wish you weren't in Ireland. If you were here we could form a dynamic duo and we'd be unstoppable! I'd never fear going to the doctor's again with you by my side!
LOL Chancery!!! THAT'S the best offer I've got in a long time!!! I've been called lots of things but never a 'little terrier'?? or more correctly a 'tenacious little terrier'!! It's your turn next to SI so come on now don't let this very little 'tenacious' Irish Cailín (Colleen) take the better of you!! Then you won't need a dynamic duo just 'tú féin' (yourself).
Night now. I've been up since 6.30am as I do B/B here in Dingle.
Oh Jill, you really are a B12 crack-wh*re, shooting up at home indeed. Next, you'll be taking full responsibility for your own health as if you didn't need doctors at all. Expect a divorce lawyer to contact you any day now for who gets custody of the needles...
Not due till this Thursday - finally. I left it till the very last minute before my next injection so that my B12 will be at its lowest ebb. I don't know how long it will take for them to come back, since they are 'special' tests arranged by The Biochemist. So I've got the dentist tomorrow (I'm a dental phobic with a condition that causes electric shock pain in my teeth; God hates me) and then the blood tests on Thursday so I'll be all stressed and strung out. I get stressed just thinking about the stress!
To make this really special I'm doing it all while moving house, on my own. And I'm dreading changing doctor, although maybe that will prove to be a good thing - who knows? It's always a real lottery trying a new doctor. You think 'Oh they can't be any worse' and then - SURPRISE! - they are.
But other than that everything is absolutely dinkum, thanks for asking. How are you, in your wonderful rosy world of self-injection? Have you stabbed anything vital yet?
Well, your a sucker for punishment Chancery!, but you need those nashers for your next new doctor so hopefully the dentist didn't hurt. They usually DON'T!! My B12 results take 10 days to come back but that's Ireland. They have to go from Kerry to Cork. I hope YOU were on your best behaviour today for your doctor so your 'best friend' The Biochemist, might give you the results you are hoping for?
Good luck with moving house, at least it's great for de-cluttering, and sure you'll be able to find everything after a year or so?
I'm slow but sure stabbing myself, but all in the right places, but thank you for asking. It's great fun. You should try it sometime.
Deff a time to look for new gp. Not that a new one is guaranteed to be better but they could hardly be worse!
We all long for a gp that listens and has the intelligence/training/compassion/time (!) or whatever they're normally lacking, to help us. We shouldn't have to investigate our own problems but as we do the least they could do is try their best to help.
Your post did make me smile, hope the "biochemist" helps you. I complained of Neuro b12 deficiency symptoms for 10yrs and now supplement with high dose sublingual methylcobalamin. My numb hands and muscle probs are no more. Now though gps panic over my high b12 bloods and I have to tell them that it's ok. They are more concerned over a blood test than the fact I no longer hve the numb hands, crazy really.
Yes The Biochemist came through, bless him - I'm getting the tests. Now I'm just worried about them all being normal and feeling like the village idiot for asking for them!
I know it's not funny, but if we don't have a sense of humour, where will we be?
I went to see my GP yesterday, hoping for a referral to a haematologist. I've been working really really hard to get my iron levels up, and the new results came back just a squeak in range. So now, because my iron and ferritin are the tiniest bit better than the absolute minimum, he won't refer me. I wondered innocently what we might do about my tiredness, breathlessness and spaciness if it wasn't low iron. You know what he did? Sent me for a chest xray! My lungs are fine - I can breathe, just can't get enough oxygen in. He listened to them and agreed they are fine. But wouldn't do anything unless I had the xray. Good grief. I've not fessed up about my B12 habit - he thinks they're being indulgent with the eight-weekly shots they give me. He'd be horrified if he knew the full extent of my terrible vitamin addiction
I work in the NHS, and I 'accidentally' left my NHS lanyard and badge on at yesterday's appointment to see if it would help him treat me like less of a malingerer and like I had one or two useable brain cells. It didn't!
Oh dear, Spacey, you're 'one of them' and even you get The Face. Perhaps all the docs are sent for condescension and patronisation classes. Maybe we should suggest they replace them with Basic Nutrition and How the Body Works. Or B12 for Dummies. I'd be happy if they attended any of those.
If she won't agree to the tests , you will have to beg , borrow or steal a couple of hundred pounds to get tested at a private laboratory ( you can find them online )
Oh dear Gcart, missed cancer diagnoses? Now that's bad. Isn't there someone you could sue? Won't help your health any, but God it would feel good to go on a nice restorative cruise at their expense!
Oh Beginner, what a nightmare. That actually scares me, reading your litany of disasters. How did you not go mad; that's like the trials of Job.
Was it you who did the great cartoon of my doc on the dartboard? I was so busy being unnerved by the eerie similarity I completely missed the name of who drew it. I'm sure it wasn't my doc, but I tell you, the similarity was genuinely disturbing - I'm sure they are cloning them somewhere. But no, I haven't seen Mabel. Where are your cartoons at? Anywhere I can go see them?
Ranting is essential to mental health, Beginner. Without it I'm sure we'd all have gone down the toilet long ago. And as much as our loved ones want to help, and empathise with us, unless they are on the receiving end of it they don't ever really quite get it.
All things considered, I slightly question the diagnosis of TN and think if you got enough B12 when you needed it you probably wouldn't have it. There's a chance that if you get enough B12 and supporting supplements now that in time the nerves will heal and it will go away. My deficiency symptoms have improved beyond what I could ever have hoped for in 2 years of daily SI.
Please consider self injecting and taking the necessary supporting supplements to make the extra B12 work.
For more information on sourcing supplies you could look up my profile by double clicking on my name and see my post "My Experiences".
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