I was given the 6 loading doses of b12 back in august, 4 weeks later i told my gp that the symptoms were back but she told me i have to wait until my next jab.... which worked out this month! I have 2 kids who need and rely on me so i cant be feeling rubbish, therefore started to self inject every 2 weeks and i am feeling the benefits of this! (i buy the ampoules from germany)
However, i recieved a call from to gp today to say they wanted to see me to review my jabs. (i had my jab at the drs last week and told the nurse i self inject once a month as what they offered was not enough, think this is why i got this call). Does anyone know what i should expect from this review? I am expecting a bollocking and for them to say they wont give them me anymore....
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Jessicarod
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much B12 is toxic” That is what my doctor told me , which is simply not true . Couldn’t say how much too much was . Could not show me any scientific evidence for that assumption ( there is none -only for the opposite ) . But you can quote the Stichting B12 Tekort — bottom left under Pinned Posts . Look at that reference . You might find information that you can quote to your GP .
you might want to suggest that your GP signs up to the area of the PAS website specifically aimed at helping medical professionals improve the diagnosis and treatment of PA - plenty there about the myth of 3 months or even 2 months being okay.
Can you or anyone else explain, on the one hand we read you can’t overdose on B12 injections as what isn’t used is being cleared from body( peed out) but on the other hand many of us who regularly top up show high serum B12 in bloodtests, obviously the surplus B12 isn’t being cleared from body very quickly, it builds up and has to be stored (in ‘liver’? ) somewhere in body until such time it is being cleared? Is this clearing of inactive B12 a very slow process and therefore showing a high serum level? Is it really not a problem to have this high level serum, is it safe and is it not a problem going around and around your body (or sitting in the liver)? I googled this but can’t find an explanation. I did read that high levels of b12 are being injected as a one off treatment in a certain medical condition , but that is different from a regular high dose, constantly. Perhaps in my muddled state I overlooked this information about it being safe somewhere mentioned. It might be this that worries our GP’s and they err on the safe side?
However, it is also the case that some people respond to high serum B12 in a way that makes the process that allows B12 to go from blood to cells less efficient. This also seems to make the process that would normally remove excess B12 less efficient meaning that serum B12 levels continue to stay high.
The easiest way of treating a functional B12 deficiency is to raise serum B12 levels even higher - and keep them there ... hence not toxicity.
Not sure if this is documented anywhere. It certainly isn't a process that is understood though the PAS is funding some research that may help identify what is actually going on.
Thank you. I must fall into this category where the serum stays high but needing more to keep on top of the recurring symptoms. I have tried to do without for 3-4 month when my injections were stopped from monthly or as required to once in 3 month. I proved to myself that it was not an option as my neurological symptoms came back. I had to start all over again with the loading procedure until I was balanced again. Have done this privately and since then SI as well as getting my injection at GP surgery. My new medical surgery is better, nurse told me GP will put me back to 1 in 2 month, if I ask him, cause that is the most they can offer. So I thanked her and haven’t bothered to ask as I manage myself quite well. I have informed her that I do get the injections in a different way.
I do hope there will be an answer in future why this occurs with some of us
They will probably be completely panicked by the non-adherence to their regime, which is inadequate for so many people with B12 deficiency that it has become a bit of a nonsense. Waiting for 3 months sent me into a tailspin. Now that would be the time to panic, don't you think ?
There is a pie-chart (I think it's under "All Things Pernicious Anaemia Society" on the right of this page)which shows the result of a survey carried out a few years ago, where people were asked what frequency most suited their needs. Have a look. Your GP might be interested to see that you are not alone .. or imagining it/ "addicted" to B12/ a hypochondriac/ depressed/ getting a "euphoric" feeling from self-injecting !
Also on the right you can find information from Stichting B12 Tekort dispelling the myth that you can overdose on B12. Might also be useful.
I was also honest about self-injection. I had my B12 injections stopped because I went to see a different GP while my usual one was away: he brought my case up at a practice meeting while she was still on leave. The letter I was sent said that if I stopped self-injecting, they would continue with my injections.
This GP had never met me before, so had never seen the effects of under-treatment. I could of course lie and say that I'd stopped, but that won't help me in the long-run, if they believe this is adequate treatment for my condition - and it won't help anyone after me, either. It will only help to maintain the status quo at the practice. So now it's just me treating myself: fine with that.
Do you keep a symptom diary that shows how your symptoms change with treatment over time?
This could be evidence that your NHS treatment is not enough for you.
In a similar situation I would ask GPs politely ( probably in a letter) how far is it safe to allow myself to deteriorate after an NHS jab before I self inject
1) Till my eyelids start twitching?
2) Till the high pitched tinnitus starts?
3) Till my muscles start twitching randomly across body
4) Till restless legs syndrome RLS spreads to my arms and head
5) Till my feet start burning
6) Till I get pins and needles in my spine
etc
However this is quite confrontational.
Did you have any neuro symptoms before treatment started or have you developed any while on treatment eg
Tinnitus
Twitching muscles
Pins and needles
Burning sensations
Insect crawling sensation
Tingling sensations
Electric shock sensations
Migraine
Brainfog
Confusion
Memory problems
Word finding problems (nominal aphasia)
Balance issues
Proprioception problems (problems with awareness of body in space)
Clumsiness
Dropping things
Limb weakness
Periodic limb movements (limb jerks)
Tremors
There are many other neuro symptoms than can be associated with b12 deficiency.
If yes to neuro symptoms and you're in UK, my understanding is that you should have been on every other day loading jabs for as long as symptoms continued to get better then a jab every 2 months.
GP can check this in her BNF book Chapter 9 Section 1.2
Even if you do not have neuro symptoms, BNF allows for jabs to be given every 2 months, see BNF link. GP may not know that BNF guidance changed a few months ago.
It's possible that you have not been receiving the recommended level of treatment and if this is so, you could argue that you had no alternative but to treat yourself in order to prevent permanent neuro damage.
You might also be able to negotiate another set of loading doses.
Sometimes I think cost can be an issue in how often jabs are given...it's a cheaper to give jabs every 3 months than every 2 months and cheaper to give 6 loading jabs over 2 weeks rather than every other day loading jabs for an unlimited period for those with neuro symptoms.
B12 injections are cheap but the nurses' time to give them is not. If you think cost is why you are only getting them every 3 months, you could point out the cost saving to the practice if you self inject your NHS jabs.
If they want to retest your b12 levels to see how high your B12 levels are then you could point out that the BSH Cobalamin and Folate Guidelines indicate that retesting after treatment has started is irrelevant.
There is a useful summary of B12 documents in fifth pinned post that mentions issue of retesting after treatment has started.
Perhaps have a copy of BSH guidelines with you with relevant bits circled.
Hopefully your review will go okay. I suggest taking a supportive friend or family member with you if possible, especially one who can back you up if you say that 3 monthly jabs are not enough.
My impression is that GPs are kinder if a witness is present.
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