I'm wondering if anyone has had issues with getting a jab from a different source. My husband normally does my jab (Pascoe 1500 hydroxo, was every 10 days but have recently gone to weekly). He was out of town so I had it done at my GP's office -- the nurse was a real snot about it because my levels (of course) were high on my last checkup, and said next time I'd have to have the doctor do it because she would refuse. I actually wondered if she gave me a placebo, because I'm usually at my best two days after, and I wasn't this time. But what was really weird is that after my husband was back in town, I had him give me a jab on my usual day -- it had been about 10 days at this point and I was a basket case. But I was still a basket case three days later, most fatigued I've been in years. I had him give me another yesterday, and am now at least able to sit up in a chair with my head unsupported, which has been a challenge all week long.
I also wondered if by increasing the frequency I was neglecting co-factors, so I took an extra folate last night (I normally take 400/day). I'm hesitant about doubling that permanently since too much folate can be a problem.
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cdragin
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Firstly , I don’t think that any nurse would dare give you a placebo , no matter how horrid she was . ( placebos are in tablet form anyhow , aren’t they? )
Secondly ,how come that she know your B12 levels ? . They are not supposed to be measured anyhow , once injections have started.. Written in the guide-lines for treating P.A.
You won’t have received your usual Pascoe injection at your surgery, so that might be a reason .
If you are taking 400 folic acid a day , you don’t need to increase that dose , no matter if you have increased the B12 .
Do point out that it is pointless to measure your B12 .once you have started injecting That is written into the guide lines for treating P.A. It has to be high . . P.A. patients have to regard obtaining enough B12 in this way . —-It’s like having a jug of water, .and you can only get access to the water that pours over the top of the full jug . You cells can only benefit from the excess B12 when your “jug “ runs over . I can’t explain it any other way.
If I were you , I would regard regard the incident as a coincidence. Just a “blip “ that happens every now and then . So glad that you are back on track again . Best wishes .
Tell that nurse to go to practice with the near neighbours, . . . . She'll do well there. . . . Seems to be a common theme there. . . . . . I havent heard anyone say similar here as yet but of course there has to be one somewhere . . . . . Yes in Ireland we have a program where those with serious health issues are given an check up every 6 months and bloods taken which includes B12 every time . . . . I my case as mine is sky high it is ignored as others are but for none sufferers it can be an advantage and that is why the B12 was included in blood tests. . . . It is part of the prevention program . . . .. . . . But never the less the nurse should not threaten to with hold an injection here . . . . She is there to as she is instructed. . . . . As matter of interest. . . . . The full works on bloods here costs about 30/35 euro in the West dont know about city dwellers and ye can book that anytime with reception . . . .It is free at 6 month checkup though. . . . . We could not do that in NI without the GP sending you to see the nurse so free was of no use. . . . .Free is only free if ye can get it
Sorry to read cdragin. No, it is unlawful and unethical to give someone a placebo.
Unless you have signed up for a Clinical Trial for Research then placebos cannot be given to anyone. Then there are massive policies, Ethics Committee approval which takes months. Finally, participants sign consent forms and during the research it is ALWAYS stipulated that they can withdraw at ANY time.
Different brands can affect us differently because we are individual biochemistry, genetics and other deficiencies and illnesses/diseases.
Like wedgewood said about retesting levels. It is quite simple that you do not offer your arm until you ask what blood tests have been ordered. Then tell the nurse/phlebotomist, Do not test my B12 level. Please write that on the form. Only when you have seen it written on the form, roll up your sleeve and offer your arm. This is informed consent.
I totally agree just a blip. Hope you feel better soon.
yeah I was kinda joking about placebo…didn’t really suspect that but it was weird how little a boost I had. She had looked at my chart from my last physical, the first for me at this practice, B12 was about 1500 then. I explained to the nurse about B12 testing a diagnosis and referred her to the November BMJ article, to which she said she does not take her orders from a magazine. The GP, who I’ve only met once a few months ago, was much nicer and was not judgmental when I said that I inject frequently and to expect my levels to be high. Next time I see the GP I will bring in a copy of the BMJ article with highlighted passages and ask her to put in my chart with a note that I am to be given injections based on symptom, not a 3-months old serum test. Hopefully my husband won’t need to leave town without me again. I’ve tried self injections but am squeamish, but I’ll get over that if I need to.
I hate blips! Perhaps I’m too hung up on the idea that there is a predictable cause and effect…I think I also have some mild ME/CFS in addition to PA, so it is often difficult to suss out if I need a jab or have just triggered PEM (post-exertional malaise) for some reason.
It may be worth just playing with needles and syringes. Get a yoghurt pot type receptacle and fill with 2 inches of water. And learn to inject an orange. If you knew someone was having anaphylaxis, you may surprise yourself and administer their life saving epinephrine.
Blips unfortunately are just part of life and part of our journey. It is weird and complicated. I’m trying to get back to swimming, it has happened once this year. Managed 4 lengths 😵💫. Last week, I got there, couldn’t even get undressed, home quick. Ever such a wonky donkey.
The nurse sounds like another fun-filled lollipop triple dipped in bad manners. There’s nowt wrong with saying, Sorry, I have to stick to our policies but can I take a snapshot of that article for my Continuous Professional Development ?
I like your reference to anaphylaxis . . . . .. . Good one. . . . . Yes blips. . . . I think we all have those . . . . Although unless I am driving I dont worry too much as it is now not severe. . . . . I do keep 4 ampoules in my van though. . . . . . Which brings me back to SC V IM. . . . . SC is not so bad for 1ml maybe 1.5ml as you are injecting water based into fat . . . Dont worry ye wont feel that bit but I have to double up with SC due to the B6. . . . . Really SC is just a prick and once the prick is done thats that. . . . . Use good wet alcohol wipes and make sure the skin is well wetted but let the alcohol dry and the skin should barely feel the prick if at all. . . . Sometimes I do not feel the prick at all. . . . . IM is fine if ye get relaxed. . . . . . Sitting in a chair of any type does not do it for me. . . . . Only way it set up straight in bed legs out straight. . . . . SC is probaly best to start with if you are squemish as said. . . . . .
"Fun-filled lollipop triple dipped in bad manners" ? ??
What wonderful pictures you paint, Narwhal.
cdragin - sorry you are going through a hard time - as the others have said :
a blip, plus less per injection than you are used to with Pascoe, plus, I would imagine, STRESS, which can be the worst waste of B12.
Stress at having to have a lollipop replace your husband as your injection administrator !
Recovery from all that could take a week or two. Sometimes I find that I need to up the frequency a little post-illness or post-stressful situation. Hope you are soon back on track.
Well I feel it rather rude to start singing at them, If you only had a brain.
The nurse cdragin encountered has been programmed about ‘high B12 levels’ which is misinformation and not open to new research and literature. That goes against Evidence Based Medicine. So, who is the Fool now ? 🤹🏽♀️
You are expecting the GP to read the magazine you bring in? I brought a printout of NHS, B12 deficiency, highlighting my problems. A year later, she tells me that A. Fib has nothing to do with B12. I also sent her in the NICE report. Which was when I realised that she hadn't read a word or took any notice of the heart will be damaged or the nerve problems will become permanent if left.It's fighting an uphill battle! No one cares!
Two friends said that they would do the injections, so I sent for the injections. Both have been advised not to. Because they can't test, my blood. We, all know that testing is useless but my friends probably think I am making it up. They do care but are worried that they will get in trouble.
I've contacted my PM, I doubt anything will come of it.
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High Folate with PA terrible GP
Feeling awful a week after jab. 
