Hi, I was hoping to get some advice. So I told my doctor I was self injecting due to lengthy waiting times in the clinic and not having the time to wait 3 hours to be seen and that I had been si every month( iv been doing it weekly but was afraid she would freak out if I told her that) any way she insisted on a blood test which has come back at 2000 mg > L apparently it should be between 197 and 771. Iv tried just taking it monthly but when I go more than 2 weeks between shots I feel horrendous. Is 2000 too high and if so how should I go about increasing the time between shots without feeling terrible.
Thank you for your time and advice
Written by
Meisor
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It should be whatever improves your symptoms you will find a frequency that works for you and don't forget the folic acid. As for the levels your gp gives you they are meaningless when you are on in injections as you will always be high. Others on this great site will give you Information to support you. I SI every 10 days and have done for 2 years I don't see that changing anytime soon
Thank you Knowlesm I have been si too for almost the same time and for the whole time have been trying to increase the time between injections I get this feeling in my head that feels like a tremor or an electric shock and was concerned it may be because I was taking to much b12
My results came back exactly the same, everyone else's will once injections start.
I've been SI every other day for 14 months now & feel loads better, when I've tried to spread them out I soon suffer.
I'm not bothered what my levels are as the guidelines doctors should follow say it's pointless checking levels once treatment has started & to just treat the symptoms, unfortunately most doctors don't follow those guidelines.
Your body takes what it needs & you pee the rest out.
I can only talk about my experience with PA, but it extends some 33 years, so I guess it might be relevant. When I was diagnosed I was started on a hydroxocobalamin injection every three months. It was not enough. I had an amazing GP who worked with me to decide how often I needed an injection. It came down to every two weeks and has been there ever since. I am surprisingly fit for an 81 year old.
When they measure my B12 level it is always off the scale - over 2000. I suspect that the problem is that they measure all the B12 in your system rather than that which is actually useful.
Please don't quote me without doing your own research, but my rather vague understanding of the problem is that the hydroxocobalamin in the injection changes to a mixture of holohaptocorrin and to methylcobalamin and adenosylcobalamin (and probably various other versions of B12) when in the body. Only the methylcobalamin and adenosylcobalamin will be useful to the cells in your body. When they measure the B12 in your blood stream they measure all the cobalamins, useful or not. So they include in the measurement a lot of holohaptocorrin and considerably less of "active B12". (Go and search "active B12".)
A lot of the holohaptocorrin will be swept up by your liver and sent down your bile duct. That is fine, if the parietal cells in your stomach are producing Intrinsic Factor (and you don't have Intrinsic factor antibodies) to convert the holohaptocorrin to holotranscobalamin, which is absorbable in the gut. That is the "enterohepatic circulation", which is also worth a search. But we PA people do not have Intrinsic Factor, so we simply add a load of holohaptocorrin to the sewers.
But, as I said, I have 33 years experience of having PA, and can still be active, intelligent and generally annoying. But I am not an expert. Search "active B12" and the various corrins and cobalamins that I have mentioned. It is really quite nice to have a vague understanding of what is going on.
Incidentally, I either self inject or my wife (retired sister) injects me if I feel idle. Self injection is actually, really, easy, even when one is ancient!
Once B12 injections have been commenced all guidelines state that testing serum B12 (or active B12) is not necessary (unless checking for continued low levels, in which case more frequent B12 injections are needed).
Both serum B12 and active B12 will be high after injections, so neither can tell you anything about the efficacy of treatment. Treatment of B12 deficiency should be based on symptoms.
Meisor - high serum B12 levels are only a potential issue if no supplements or injections have been commenced - whilst high levels can be 'normal' for some people, they can also indicate an underlying health condition (perhaps your GP is thinking of and being confused by this?).
However, when injections have been commenced, it is usual to see B12 levels that are way over the top of the reference range (because high doses have been injected). My levels are always over 2000 and we have seen the here as high as 5999 (i.e. over the top of the reference range used by that particular lab). So, no surprise that you B12 level is also over 2000 - nothing to worry about when on injections. B12 is non-toxic, non-addictive and safe at high doses (repeated doses of 5g are given IV for the treatment of cyanide poisoning, with no detrimental effect). That’s fifty times the amount injected for B12 deficiency). Given twice. And perhaps more, if required!
So...it follows...your GP is not correct in saying that your B12 levels should be within the 'normal' reference range when on injections.
Frequent of injections differs for each individual - some here have to inject every day to stay symptom free - and some (though not many) manage on an injection every three months. There is no one-size-fits all treatment regime that suits everybody (the human body runs like a car - we all need different amounts of oil and petrol (vitamin B12).
So...frequency of injections should be based on symptoms, the aim being to have frequent enough injections to stop symptoms returning. If symptoms return before the next jab and then abate once that jab has been given, that's a sure indicator that injections are needed more often.
The fact that you feel terrible if you go longer than two week without a B12 injection is a sure indicator that you need your injections two weekly. It's quite safe to have this frequency of injection so please don't stretch out your injections, suffer the return of symptoms, and end up feeling terrible.
It's also worth noting that sometimes the frequency of injections needed to stay well changes - more are sometimes needed to,keep,symtpoms at bay - nobody really knows why!
The most important thing is that you have your injections frequently enough to keep symptoms at bay.
If you look at the PAS pinned posts to the right of this page (third and fourth ones down) there's more detailed information about these issues (well worth a read and you could print them and take to your GP, if needed).
Many GP's are quite ill-informed about B12 deficiency, the symptoms it can cause, and it's treatment!
It's quite ridiculous to suggest that you withhold injections to get within the 'normal' serum B12 reference range when injecting B12, which will inevitably push B12 levels over the top of that range!
Further to that which I said about the enterohepatic circulation, which those without PA have and those of us with PA don't have, it might be worthwhile to read b12deficiency.info/assets/t... . That is the best, easiest to read, paper that I have seen on the subject. And it goes into far more about PA, or, to be precise, B12 deficiency, than only the enterohepatic circulation. It also describes the various forms in which the vitamin appears. There are many such forms, and, every time the medics check your B12 serum level, they measure all of the useful forms and the useless forms all at once. The usual serum level reading is not actually very useful by itself.
It is, apparently, possible to get an "active B12" measurement, but it seems that not many GPs know this and it might be that such a measurement is only available privately. I have never had one and have no intention of paying for one. Provided I stay healthy with a shot every two weeks I am content.
So, I shall keep on with my two-weekly shots, and with a serum level off the scale, at over 2000. I have lived 33 years with PA. I plan to live to 120, at least, with PA, provided I still have a GP who is willing to prescribe a shot every two weeks.
Just one final thought: the day after I had the first shot of hydroxcobalamin, 33 years ago, I had the most horrendous headache. (My goodness, don't I remember it.) But the next day I found I could think properly, having been relatively incompetent for a couple of years prior to that. Lesson: don't let the medics worry only about the size of your red blood cells. They will be sorted out if you only have the amounts of B12 that so many GPs think is enough. But the thing that really needs lots of the vitamin, in my case 1mg every two weeks, sometimes more often, is the nervous system, including, especially, the brain.
Just to mention that when my original B12 serum test on the NHS showed a below range reading, the lab automatically tested active B12. This also showed a below range level and so the lab commented that this confirmed my B12 deficiency.
So the NHS can do active B12 tests and therefore it might be worth asking for if anyone is trying to get a diagnosis.
Thank you everyone for your advice, I'm so grateful, I feel confident now that si every week is the right thing for me. I will print off the b12 information and bring it into my doctors, I doubt they'll approve weekly injections but so long as I can continue to purchase from mycare.de I'm happy to keep doing it myself. Iv si 3 times now in 5 days last one this morning and my god I feel 100 times better, my mood is lighter too, I was beginning to fall into a dark place and anxiety was becoming unmanageable, I wont be trying to increase time between doses any longer.
There is only one side of things that I am fairly sure about.
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