I have had 2 loading doses of B12. Before the 3rd set of loading doses began, the nurses queried the reason for such frequency...This started the drs querying it despite agreeing another 2 nd and 3rd course of B12 due to neurological symptoms. It appears my improvement in symptoms was not quite enough to justify and they've now suggested my improvements are the result of the placebo effect 🙄 I explained that I have read some people take years to see positive results from EOD but I can tell they now do not want to continue despite what I tell them and have asked what is the science behind EOD injections.
They suggested taking blood tests to check my serum levels but I declined as I don't see the point when I've started injections and any guidelines I've read state clearly that testing after treatment has begun is ill advised.
I need to get bloods for an unrelated referral and wouldn't put it past them to add in B12 but at this stage I cannot win based on their most recent response.
What IS the science behind EOD injections?
P.S I'm in Scotland
Thanks for reading!
Written by
La2016
To view profiles and participate in discussions please or .
My researches tell me that injected B12 has a life of 48 hours in the system (80%) and the remaining 20% has a half life of 6 days. I don't know what half life means in this context other than a residual presence. Nor can I tell you where I read this information. I am not a scientist or medic. I will ask my haematologist in August and report back then.
They should be acting on your symptoms not the numbers reported on a blood test form........... nice.org.uk/guidance/ng239/...
It sounds like your Dr is biased with regard to treatment and unfounded comment of a placebo effect. I would arm yourself with info and send a stiff letter to the surgery manager.
There is information on the PAS website to guide Drs with regard to correct treatment......... pernicious-anaemia-society....
Dont be beaten down by their ignorance.............
It is not for you to have to explain the science behind EOD injections for those presenting with neurological symptoms, it is for the GP to read the recent NICE guidelines if they need any advice about your correct treatment frequency !
What is the science behind constantly measuring B12 that they have just administered ? It is already injected as a measured amount !
My GP requested 3 injections a week for me (the closest she could get to EOD) after having online discussions with secondary care specialists, because she could see that I was unresponsive to the loading dose of 6 and subsequent B12 maintenance dose every 3 months. My B12 was, at that time, above measurable : >2000 ng/L.
She did not need to rely on a blood test to know what ill looked like, luckily. She also knew enough to get my MMA tested - which was raised. It did not do what it was supposed to do: link with the injected B12 during loading and take it to cells ad tissues. It took three years of frequent injections to clear my MMA down to a figure within normal range.
I still need frequent injections to control symptoms, but now do it myself. I started with EOD, then reduced after about two years to twice a week.
We aren't all the same and cannot all get to an injection frequency that they find acceptable- although like Nackapan , I tried. So no miracle cure, no placebo effect and no "sense of euphoria" as one consultant truly believed. Until I explained from a patient perspective that this might be true for well people, but I wouldn't know, having been ill for many years by that point.
[ Never had euphoria down as a goal, but I would have liked to have been able to return to my job. ]
Jillymo has supplied a link to the NICE guidelines. They are also to be found on a link from the posted women's magazine article today. Worth reading what they have to say about frequency of treatment ...and retesting once treatment has started.
Then ensure those who are responsible for your treatment do the same.
"I need to get bloods for an unrelated referral and wouldn't put it past them to add in B12"
You could state clearly to them (probably best to do it in writing so you have proof) that you do not give permission for B12 to be tested. Keep copies.
Link below has some useful quotes from UK B12 deficiency documents.
What is the science behind EOD injections is a great question.
The answer is this. Many people, I would estimate thousands, let's say 5000, find that EOD injections keep their symptoms at bay and they live good lives which they would not do if they stopped - we know cos we have all tried reducing the frequency. So the science is that data (5000 people) are available which demonstrate the efficacy of EOD injections and there is even more data that stopping this frequency results in the symptomsreturning - this is a very profound observation. A deeper question is why is a lesser frequency of injection is not effective for these people, a curious mind, a scientist, might wonder and investigate. Instead they cling to dogmatism and don't observe. This is why progress is so slow.
I would be interested to know what the science is behind seeking every opportunity to not give b12 injections to people with continuing neurologicalsymptoms. Perhaps someone should investigate.
I found 2 sources describing how fast B12 is eliminated, the 50-98% elimination claim may be related to the EOD injection logic. However it doesn't seem quite compatible with the second source which found a half-life for B12 in plasma of 5-6 days : If at least 50% was eliminated in 48 hours, I don't see how 50% would still be in plasma by the sixth day. I may have missed something, if someone has come across clarifying research, let me know.
Hydroxocobalamin is more slowly absorbed and more slowly excreted thus why the injection materials sometimes refer to it as "depot".
"One of the cobalamin analogues, hydroxocobalamin (aquacobalamin, vitamin B12a) is more slowly absorbed from the site of injection, more slowly excreted in the urine, and builds much higher and more prolonged vitamin B12 blood levels than cyanocobalamin. These “depot-like” features depend on the tighter binding of hydroxocobalamin to body proteins, including serum, liver and muscle proteins."
"Peak plasma levels of cyanocobalamin are achieved within 1 hour after intramuscular injection. Within 48 hours after injection, 50% to 98% of the dose is excreted in the urine, with the majority within the first 8 hours."
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
3 Months of EOD B12 Injections
Continued B12 refused
Continue supplementing for next blood tests?
How long I should stay on b12 Eod injections?
