well, she's obviously no expert on IM injections - which can be either arm or thigh ... and although it isn't the recommended treatment in the UK subQ can work quite well - yes IM gets more into your blood stream quicker but subQ seems to last almost as long just because the rates at which B12 is removed are so high to start off with.
I knew you would like this, Gambit. Still good to know I'm not the only Functional in town ! Wonder if the other 1 or 2 are getting 2 injections a week too? Didn't dare ask !
That's how they tell it, Amy, everywhere I've read about it (not much about it to find and I've really tried).
With me, I was found to be just under range at first in Feb. 2016, then put on usual: loading injections, then maintenance dose of 1 injection every 3 months- when I just got worse and worse, despite now having serum B12 levels of over 2,000nmol/L which is the highest testable level. This meant my blood was swimming in it, but it wasn't getting through to tissues so getting worse and worse, as if not being treated at all. MMA level was tested and was high (over the top of the range) which means that diagnosis of "Functional B12 deficiency/insufficiency at tissue level" was confirmed by haematology- there are other reasons for high MMA but these had already been tested for by my GP. MMA is still believed to be the most accurate secondary test, and certainly I was very glad of a diagnosis. Homocysteine test also sometimes used. [ I believe both are fairly expensive, but I got MMA tested on NHS. You really need a good GP that you trust for all this because fast action helps] - Hope that explains things, although I know that everyone's experiences vary.
So I've never been normal range yet, and long-term treatment guidance [where any exists] is very vague. Seems that a lot of B12 injections = some getting through, but very up and down and no real pattern! Do you think this might be you?
Hi Cherylclaire, I have a diagnosis of Generalized Anxiety Disorder but my fatigue and other symptoms have been getting worse and worse. I asked for a B12 test and the Serum B12 is the high end of normal. The MMA is normal too though. (I have been taking Berocca (B vit complex) for 10 years, just to stop my tongue being sore). I have to wait another three weeks for a GP appointment to discuss a therapeutic trial of B12 and the new guidelines as I have most of the symptoms and a family history of PA.
I just don't know, the descriptions on the PA society page made me cry, I have never been so accurately described. My best friend and my husband also said it all fits. But of course I could be barking up the wrong tree, you end up doubting the evidence of your own body when you are told all is normal don't you? And then there's the fact that there are good days, the fog lifts and I can manage more. But I think that is typical of B12 deficiency.
When you are already on anti-depressants there's a tendency for the docs to attribute everything to that.
True, Amy, and I also would have been put on antidepressants- the GP tried that a couple of times and I refused on the grounds that I was not depressed (although this is a symptom on most lists anyway). Also if you are having constant mood-swings, sooner or later it might swing into depression (and hopefully out again)- my main problem was impatience, anger even with strangers...but even when crying, seemed to be out of frustration at my own shortcomings -as concentration, cognition and ability to do simple tasks all seemed affected by this.
I cried when I read Martyn Hooper's (founder of Pernicious Anaemia Society)book: the chapter about his own experience and how hard it had become to teach effectively then later, to teach at all. Recognised me there.
If you feel unable to trust your own judgement at the moment, trust your best friend and husband. I wrote down a symptoms list and still fill in a daily chart with the easiest symptoms to track recorded on it: hair loss, cracked/sore mouth etc. This was on the advice of some very helpful people here. It helped me to see where improvements had been made, slowly over time, and patterns beginning to emerge, which has only been a recent thing.
When I was really bad, and could not read my own notes, put my own case well, or understand what the GP was saying- I took my partner with me. Now at least I am able to talk to the GP alone, put questions to her and remember what she said in response. Things seem to have ground to a halt a little lately, so I sent her a letter: questions mostly, and enclosed copies of my symptoms list and symptoms frequency charts- quite a lot there so I will leave it to her to contact me when she has gone through it- if it doesn't get binned first!
No history of PA in my family to my knowledge, but lots of autoimmune links: psoriasis, thyroid problems incl. Grave's, vitiligo, autism etc, so still consider myself lucky in that respect. Have you joined the Pernicious Anaemia Society? Statistics re. family history will be on their website from member surveys carried out.
Tick off symptoms on the most appropriate list and start with that, take your best friend or your husband with you when you go back to GP. Decide what you want their role to be before you go, have a signal if you want them to intervene on your behalf, perhaps? Hope it goes well for you, let us know
Thanks so much Cherylclaire. I can relate to so much of what you describe.
I have had on and off hair loss since I was 18 and it was put down to iron deficient aneamia. I'm 37 now.
Yes I have joined the PA society and read Martin's most recent book. In fact it was him I spoke to when I phoned them. He was very kind and helpful.
Unfortunately my husband is on a course on the day of my GP appt. and my best friend lives 200 miles away. I will write everything down though and print off the symptoms with the ones I have (most of them) marked.
I do hope things continue to improve for you and that your doctor goes through your questions properly.
Thanks so much for the support. I'll let you know what happens. x
Unfortunately, when I phoned Martyn, mostly what I did was cry and make him promise to read a letter that I sent him. Not sure if he ever got it, I didn't hear back at all: it probably didn't make any sense anyway. Without this forum, however, I'd probably still be crying- instead, I've started painting again today! So, still a lot of reasons to thank him.
Let's hope the list of questions to my GP make for easier reading!
They can be in the stomach as well! I'm located in the US and just started doing my own injections. My neurologist told me stomach or thigh, whichever is my preference.
sounds like you are actually doing subQ rather than IM - into the layer of fat below the skin rather than the muscle - which can be done into stomach or thigh - but IM can't be done into the stomach.
In the US they use subQ quite a bit for B12 injections but here in the UK most medics seem totally unaware of it as an option and it isn't mentioned at all in guidelines.
Reminds me of a conversation I had with the relatively new nurse at my practice where I have been having injections of cyanocobamalin for 45 years - originally every four weeks now increased to every three weeks.
As I walked in, took my jacket off and gave her my vial of B12 she exclaimed "My! that three months went by quickly"
I said "Ah but I have my cyanocobamalin injections every three weeks"
I know. Even my favourite nurse admitted she looked up 'B12 and Toxicity' when I was put on 2 a week. At least she cared enough to check if she was killing me, I suppose !
just unfortunate that they don't care enough to check that they aren't killing you by undertreating you by blindly following guidelines on 3 months rather than listening to what people say about their symptoms.
Yes I think you have to give her a Brownie point for that.
Both nurses at my practice say the same things everytime with a tone in their voices like Oh your a month early for yours it's not 3mths yet.. me i politely say i have mine every 8 weeks always reply with same answers it's usually 3mths in the end the last visit I had a tone in my voice which I said please look at my notes properly if anyone is going to change it it will be my GP I am happy to go on 3mths now as it's well up but I don't like their tones how they speak not at all friendly
yes, I have got a Special Left Arm, which is being operated on soon: 29th March. Special because I broke it in June last year and it doesn't work now.
The other one is quite special, too, because I broke that one 10 years ago and it's got a pin in it- I've got a great Action Woman scar and may soon have a matching one !
[And before anyone else says it, I've told them about B12 and laughing gas, and how it's not that funny a mix.]
Not at all, Ryaan, -doesn't bother me, and will soon be fixed. Can't say my arm even hurts if I don't try to push it to it's limits or sleep on it. It just won't move very far from my side at the moment.
As for SI, I am not at all squeamish, and so I find it quite comforting that there is a plan B if I run out of luck with NHS and can't survive on programme offered. I know there is support and guidance if I need it.
So far, I seem to be alright; gradual improvement mainly and hopeful for more, some setbacks so trying not to get too overjoyed about 2 good days in a row, and learning to adapt better.
You didn't say anything I didn't like; I liked what you said and that's why I replied !
My very first encounter of vitamin B12 was when I was a student nurse 20 years ago and doing a stint on the mental health wards. They always did them in the bottom. We had to visualise the muscle, so far down and so far in to administer IM. Good job I asked when I went for my loading doses before I dropped my knickers and assumed the position!
Only 2 or 3, then I think there's a lot of untreated sufferers in her patch. Either that or she's hiding something for some reason. In the couple of streets around me, there's 5 other people with b12 deficiency.
I meant Functional B12 Deficient (and so she isn't counting the others)- which is why I called it "One for the Functionals". We are definitely the wierdos: load us up to the gills and still nothing happens. Nightmare. Should be called Non-Functionals.
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Functional Neurological Disorder!
Functional vitB12 deficiency - anyone else?
