I have PA and my 15 year old daughter has recently been displaying symptoms - utter exhaustion to the point where she was falling asleep at 4.30pm and sleeping through to the following morning day after day. Plus memory problems and a weird kind of involuntary jumping / twitching / startle response. Her GP gave her a course of 6 vitamin B12 injections after a low B12 blood test (but negative for the antibody) and wanted to review in 6 months. Originally she had wanted to prescribe oral, but due to family history of PA and Neuro symptoms agreed to give injections.
She has been like a different child- she has caught up on all her school work and is finally really knuckling down to studying for her upcoming GCSE'S in May / June. I feel guilty that I'd let it get so bad before getting her properly treated. We are coming up to 4 months in and the exhaustion is kicking in again. The first available GP appointment isn't for another month. I have B12 and needles here - can anyone point me to instructions on how to use? YouTube has videos on IM injections but it's the set up with which needle is for drawing out of the vial and which is for injecting - the green needle looks thicker, so I'm guessing that's the one for drawing up?
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TFH1
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Needles are graded according to fineness The higher the number , the finer the needle . You don’t say if you are injecting by the I.M.method ( Intra-Muscular ) or the sub-cutaneous ( sub -cut ) GPs use I.M . , but many members on this forum use Sub-cut successfully .
You should know that as many as 50 % of Pernicious Anaemia Patients test negative for Intrinsic Factor Antibodies! Our Chairman , tested 3 times before they showed up . Your GP should know this . You must know that the medical professional is very ignorant on the subject of P.A. / B12 deficiency. We have to look out for ourselves I’m afraid. Hence the PAS !
If you inject I.M . there is a 26 x 1inch needle which is the finest suitable for I.M.
For sub-cut , a 30G x 1/2 inch is best -really fine .
I will send you a link to sone information by Private message . Best wishes to you and your daughter .
hi, wedgewood I love all the info you give out, I have home injecting, for couple years after gp decided pa was OK now! My husband type 1 diabetic always done my injection, silly me should have paid more attention. Anyway he is away for a while and am desperate for a shot I normally do every 2 weeks but have just had cataract surgery and feel I have depleted quicker. Is it possible you could show me how to prepare injection, seen on YouTube but don't trust. Don't mind the actual injection just confused how to draw up.
Open the ampoule using a swab wrapped around it , to avoid nasty cuts . The weakest spot on the ampoule is marked with a spot on the neck .If you have a problem with this procedure, a device called an ampoule opener , about £4.00 is obtainable from amazon.co.uk
I use a 2ml syringe , although the ampoule is 1ml This ensures that I get every last drop of precious B12 into the syringe .I use a long 1 1/2 inch needle to extract the B12 from the ampoule . Flick the ampoule to ensure that the B12 is in the bottom , and break it open at the spot that is marked on the neck of the ampoule ( the spot marks the weakest place on the neck . ) Put the extracting needle on the 2ml syringe I then pull out the plunger on the syringe , and inject air SLOWLY into the ampoule . Then , when the plunger is totally pushed in, every last drop of B12 is in the syringe . Now the injection needle ( I use a 25G x 1inch ) is put on the syringe and any air left in the syringe is expelled until a tiny bead of B12 appears on the tip of the needle 💉. Now you are ready to inject into the middle outside third of your thigh , where the muscle is nearest the surface ( Vastus Lateralis ) . Inject at an angle of 90 degrees .
Thanks Nackapan - giving her an injection myself is second choice, first choice is GP agreeing to do it - last choice is continuing to sit by and watch her suffer.
If she needs injections, it is much easier if the mom learns how to do it. Maybe the mom can make an appointment with the physician for a lesson on how to do it? My husband gives me injections every three weeks. It is so much more convenient than going to the doctor to get one. Especially when I am out of town skiing. My husband learned how from a doctor.
TFH1 Please note that this isn't a substitute for professional medical advice. I am with Nackapan below in trying to get an emergency appointment with the GP rather than going down the road of injecting your own child. Put down details of your daughters symptoms and how they have and are changing, list out any other information you want to share with the GP, and, under the circumstances you might want to take a friend or partner with you as it is very difficult to communicate when you are emotionally involved in a situtation. Write down your daughter's thoughts as well and be clear as to what it is that you want from the appointment - testing, a referral or another injection.
It may be worth trying high dose oral/sublinguals in between injections - they can be effective for some patients - even those with PA - but don't help everyone. They are most likely to work best if started immediately after an injection.
Just got this from the docs - can you help me respond? Hello, It does sound like your daughter probably needs some further injections. However we do need a B12 level on her before we do this as otherwise we risk overdosing her if her levels are normal. Could you book her in with a nurse for a blood test? We should be able to do this week. The results come back quickly and we can then get her started.
A blood test will likely show nothing useful as its likely raised anyway - just not far enough. Its impossible to overdose so I suggest you just insist on her having the injection now.
I think it's hopeful that GP is considering more injections.
Some links may have details that could be upsetting.
I agree with Gambit62 that it might be helpful to take another adult with you and with Nackapan that it's worth trying to get an emergency appointment.
My understanding is that testing B12 during treatment is not normally needed.
The website is run by Tracey Witty, a UK campaigner for B12 deficiency issues. The website has articles on B12 deficiency in children.
"Her GP gave her a course of 6 vitamin B12 injections"
My understanding of UK guidance on treatment for B12 deficiency is that as neurological symptoms were present eg twitching, memory problems then the treatment should have continued beyond the 6 loading injections.
Does her GP have a list of all her symptoms?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
As far as I know treatment patterns for children are similar. I don't think there are any formal guidelines in UK for the treatment of children with B12 deficiency.
BNFC (British National Formulary for Children) Hydroxocobalamin
Click on Indications and Dose then click on "for hydroxocobalamin"
It says that children with neurological involvement (meaning neuro symptoms) should have
a b12 injection every other day until improvement stops then every 2 months
The above might be a good one to show GP.
If the GP says that she doesn't have macrocytic anaemia so doesn't need this pattern of treatment, you could point out that NICE guidelines for B12 deficiency say that
"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."
Has she been referred to a neurologist or haematologist?
If you have time, might be worth finding the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board. These may cover just adults not children.
my 16 year old grandson was diagnosed yesterday and was exactly the same as your daughter. He refused injections through fear. Dr said to my daughter just to go out and buy tablets. He is terrible with symptoms and looks grey/white.
Good morning...your grandson needs to be encouraged to have the injections.. delayed or undertreated b12 deficiency can cause irreversible nerve damage including subacute combined degeneration of the spinal cord Please get your daughter to research B12 deficiency... there is the pernicious anaemia society and also the B12 Society...
The gps advice of taking supplements just goes to show how little they know... some of us cannot absorb B12.. so supplements will not help at all but will increase further blood test results ( unusable B12)
With low B12 it is also common to have low folate ferritin and vitamin D.. so definitely worth finding out those levels.. what gps say is OK is rarely optimal
yes with both my daughter and I having PA and having to self inject because of ignorant Drs we are all to aware. I have SACD my daughter is a bit luckier. I’ve managed to persuade him this morning but they are very painful. I’ve also got him some vit D and K2.
B12 deficiency causes the body to produce abnormally large red blood cells that are unable to function correctly... B12 needs both folate and ferritin to create new red blood cells... therefore when on B12 injections our body is depleting folate and ferritin
I'm not medically trained... but I would take that to mean that once you are on an adequate amount of B12 injections and no longer have large red blood cells , both folate and ferritin should remain at a good level with a healthy diet .. but on a starvation diet of B12 injections,red blood cells will continue to be unable to function correctly and place more demand on folate and ferritin resulting in low levels and deficiency
iron and ferritin levels were ok. Kidneys not good for some reason which in a 16 yr old is concerning. I’m a retired nurse but kidneys aren’t my speciality unfortunately. Don’t know about folate which would suggest either they didn’t do it or it’s normal. I would imagine it’s part of a basic blood panel although our gp practise is abominable so it’s anyone’s guess. They didn’t do vitamin d which is surprising. I wonder if he would cope with subcut better. They won’t do that at surgery but going forward my daughter is a nurse so could do them at home.
Folate should always be tested along with B12... as when B12 deficient folate is almost always low also.I take folic acid daily.. I also inject B12 daily as I have severe neurological symptoms
Subcut is definitely easier and far less painful.. I don't feel it at all
How often are you and your daughter injecting? And do either of you have neurological symptoms?
I'm every 8 weeks and daughter hasn't been given any since her 6 loading doses, so currently fighting for treatment. I was original poster on this thread.
social services would remove her if they found out you had injected her, it would very wrongly be considered abuse. You could anonymously contact NSPCC for advice re response they would make. The NHS and social services very controlling re issues like this and children and if she ended up out of your care who know when she would get her injections on NHS.
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Help re B12 and folate treatment please...
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