Here’s one for you. Some say it takes weeks or months for B12 levels to drop, even in the case of those with poor absorption or storage or methylation, so is there any point going without B12 the day/s before a test if you need it more often to function? E.g. I can't go without for more than a few days, a week max (and then it's painful/uncomfortable/deleterious). Yet my GPs say I shouldn't take it for a week or more beforehand. I’ve a test in 10 hours and counting, as well as a dose due, idk🫠
It’s possible I’m just down the rabbit hole looking for any help or further diagnosis, anyhow. Wherever I’ve lived (in the UK), health boards all say the same about not injecting or supplementing EOD due to cancer risk etc. All well and good, but some of us need it to function! And it sounds like the most anyone can offer is a clinic to diagnose PA, and after that we’re on our own. Perhaps if these professionals looked into the holistic/systemic reason for deficiencies, then they could treat the root cause and eliminate the need for SI…🙏
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a-wonderful-seed
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I assume yourself injecting but as yet not diagnosed, am I correct ? If diagnosed there is no need to recheck your levels because it is obvious they will be high......... dont offer your arm and refuse further testing, it states in the guidelines no need to retest once on treatment.
If a person stops B12 the body's stores of this vitamin usually take about 3 to 5 years to exhaust.
A Dr might recheck your levels a few weeks after starting treatment to see if your levels have gone up but after that it is not necessary.
I agree the root cause of the deficiency should be addressed but the idiots go by the numbers on the blood form !
I agree with Jillymo re testing... but I haven't seen any references to an increased cancer risk from supplementing B12 at any frequency, only that naturally high B12 without supplementation can be a sign of certain cancers.
My B12 serum level was retested because I was not responding at all to the loading dose, then deteriorating once the maintenance dose was started. My blood was absolutely swimming in B12. Luckily, my GP also had my serum MMA tested - and it was raised. She had suspected functional B12 deficiency as the cause and this was my diagnosis. A very good reason for retesting.
It did not prevent her from sending me to consultants to check that there was no other reason for my symptoms remaining. It did mean that my B12 treatment was increased to 2 injections per week. This was the closest to EOD that the nurses could manage. The GP, aware that this was working well, requested a continuation at this frequency after 3 months - and so I had 6 months in all.
She was in regular contact with consultants at this point.
Nothing else was ever found. I now self-inject at this frequency and have done for 7 years now. I informed my GP and consultants. My folate, ferritin, vitamin D and thyroid were regularly monitored as these can be affected.
But not my B12 level as there is no longer a reason to do so.
The Adult Inherited Metabolics Diseases consultants who were looking for DNA clues to what was causing the functional problem told me that, should they find a genetic reason, my practice would have been asked to administer 2 injections per week for life.
Sadly, they did not find a cause for me - but my point is that if it is a necessary frequency regime, it is the required and advised lifelong treatment. Not a cure, but neither would it be advised if dangerous. If not a cure either, then what would be the point of a retest ?
No consultant ever asked me to stop the B12 injections. One consultant once asked my GP to monitor and observe me while I reduced my injection frequency, concerned that "over measurable" results could be increasing over time .... then reversed his opinion completely after having spoken to colleagues, saying: "Your body needs this amount of B12 to function, and of course tablets won't be of any use."
He had made a reasonable assumption about my "sky-high" B12 levels and then checked if he was correct with knowledgeable and experienced colleagues, accepted their findings and relayed them to me. And that's fine.
Now neither of us are worried about what I am doing.
Thank you for sharing your journey, it’s really heartening to know that there are intelligent switched-on doctors out there still who see us. And I’m so glad to hear your road to optimal health is being supported🫶🏻
Tbh I hadn’t considered metabolic/DNA testing to find out a cause. Ngl I’m rather squeamish about anyone looking at my genome map😖
This was an NHS referral to Adult Inherited Metabolics Diseases, primary care to secondary care, suggested by haematologists.
These people were very apologetic about not being able to find a genetic cause for my condition, were very supportive and ended the final consultation, a couple of years after the first, by suggesting I join the Pernicious Anaemia Society, discussing Martyn Hooper and the plans for further research.
It was really the end of a long journey looking for my answers. So although I cried, at least this time, not angry tears of frustration and exhaustion. Just felt as they did; sad that nothing came of it.
An excellent GP vital, and a consultant able to admit to a complete change of opinion, in front of a group of his students, was just an added bonus.
Sadly that GP has now left the practice.
Myoldcat : not all of them ! But an experienced, confident professional should be able to admit they don't know everything and then look for where the answers lie. Communication is key; "I don't know, but I will try my best to find out for you" is acceptable as an answer - when true.
It's good to hear you had a positive experience with the thoughtful medical professionals you encountered. They were willing to listen, acknowledge they're not B12 experts and seek advice, rather than reacting with the knee jerk responses we often hear of.
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