Hi, just had my blood test done which came back as 256pmol/L and they recommend I reduce any supplement I am using. Last July it was 39.1 and after trying patches and oral spray I self injected 6 x 1000mcg Hydroxocobalamin spread over 2 weeks starting 3 weeks ago. I feel a lot better, memory has returned with my energy levels and feel at least 5+ years younger. Could someone please give an indication if this level is too high or not. I will be starting a monthly or two monthly single dose maintenance next.
thank you
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john159
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One is arrhythmia and while I was on the patches I did develop Paroxysmal Atrial Fibrillation but I'm thinking the level in my blood from these would not have been significant then. These odd attacks have continued while I was taking the injections but I am thinking it is just coincidence? It still is something else to worry about. regards John
As fbirder says that level is not too high I self inject and I’m over 2000 and like you say feel so much better,I’ve been self injecting a year now every other day and presently trying twice weekly.I have pernicious anemia and functional b12 so trying to reduce too much is useless for me I quickly revert to being symptomatic as the b12 can’t get to my cells unless I have really high levels in my blood.You will find a frequency that works for you and keeps You well so keep reading the forum and the members will keep you well informed they’re a great bunch.best of luck
I've also reduced my injections from every other day to every three days, and was given a diagnosis by GP, confirmed by the hospital lab, of functional B12 deficiency. It was going well until I got covid -after that, went back to every other day for a while. Just a blip, and now back to "normal": every three days. Functional B12 deficiency is quite rare, I think: my GP said she has only found 2 cases in her 20+yr career. My last blood test in November was the best I've had yet: folate, ferritin etc perfect finally. Unsurprisingly, B12 was over 2000ng/L. MMA finally within range in 2019, after being raised for three years. As for vitamin D; awaiting news about my osteoporosis of the spine- and expecting it to be good news.
john159 - the results you have given look as if one was from a serum B12 blood test, and the other was from measuring the active form of B12 only: holoTC (holotranscobalamin). Could be mistaken (?).
Initially, if B12 deficient, a GP would ensure you got a loading dose to bring your levels up quickly and then continue with a maintenance dose once B12 replete. The loading injections are generally 6 within a month, then every 2-3 months to maintain levels.
If you have neurological symptoms, the medical advice to GPs is to continue every other day injections until no further improvement can be achieved, and only then reduce frequency. It seems many do not follow this advice, which is a great shame as nerve damage can take a while to repair, and sometimes doesn't.
So you are reaping the benefit currently of correct (self-)treatment !
B12 Patches and oral treatments (tablets, lozenges, spray) do work for some people to some degree but certainly not all. Some use them as a top-up between inadequately-spaced injections.
The good thing about self injecting with GP's knowledge/approval/guidance is that the other things that can be affected get monitored regularly: folate, ferritin, vitamin D and thyroid.
My levels of these were very erratic for a few years, despite my best efforts re supplements and diet. Not easy to work out what is required on your own.
Hi Cherylclaire thanks for the info. I have checked my Medichecks results and the both say Active B12 and the same range is shown on the results so I am assuming they are the same. I have attached one and will attach the latest next
Just checked what my active B12 had been when I saw haematologist in 2017: it was over 128 (no unit of measurement or range given in report) - so am guessing that this was the limit of measuring capability in that lab. A true reflection of the frequent B12 injections I was getting at this point in time. My serum B12 tests were coming back at over 2000 ng/L for the same reason.I wouldn't be too concerned about a high level, John. Get those other things checked on though, if you haven't already.
Ferritin, folate, vitamin D, thyroid most commonly.
Thank you DevH now I know the present level I wait till my symptoms reappear then restart. Reading the forum there seems quite a variation in frequency of doses. John
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