I have been feeling quite unwell with intense fatigue and a myriad of other issues since January 2023. I have sibo and gastritis. My b12 and folate were checked and my folate came back at 2.7 which is low. My b12 however looked ok at around 500. I began to supplement with folinic acid (800mcg) and sublingual hydroxocobalamin but didn’t notice any effects really.
I then decided to get injections privately and I’ve been having them weekly. This is my third week. I have noticed after injection a pins and needles like symptom on my fingers, i sometimes feel it in my toes as well. I also feel very tired. I take potassium, magnesium and a seeking health methyl free multivitamin.
I am new to this and I am wondering, despite my “normal” b12 levels, does this suggesting a wake up or reversing out is happening and I should continue with injections?
Any thoughts on this most welcome. Thanks.
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Gremmygrem
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My vitamin d levels are really good because I supplement 3000iu each day with k2. My ferritin last check was 88.
I haven’t retested my folate levels yet but I plan to do that at the start of next month.
My thyroid was checked and gp said it was fine. And yeah I’ve taken antibiotics and other things for sibo but never managed to improve my gastro issues, if anything they’ve just gotten a bit worse.
I drink coconut water for potassium as I don’t like to supplement it directly as it irritates my stomach.
You can have a cellular/functional B12 deficiency at any serum level. My serum was top of range but I am still benefitting from injections. Depends what the problem is, and where. Cheers
With small intestine bacterial overgrowth (SIBO), you might expect B12to be low as the bacteria steal your B12. They also like to rob you of oil-based vitamins.
This can make you feel really unwell, and be difficult to treat. Antibiotics are usually prescribed, but the bacteria can become immune, meaning that a series of different antibiotics are needed to get this under control. Some antibiotics (just to complicate matters) can deplete B12 levels.
This should be a problem that your GP can help you with ; monitoring of vitamin levels and which might be the best choice of antibiotic etc not something I'd expect a patient to have to deal with.
Functional B12 deficiency: an inability or reduced ability to transport the B12 using methylmalonic acid (MMA) to where it is needed - cells and tissues - might well show up as an increase in both serum B12 and MMA, the link between the two not having been made effectively. This would mean that, while total serum B12 is testing as high, not enough of it is being transferred properly. An MMA test result showing as raised or high is a recommended secondary test. This is not a common complaint - but this may be due in part to lack of access to MMA testing at primary care level.
My understanding is literally once b12 injections begin, regardless of blood/absorption levels, mma levels will decrease. Because I requested more frequent injections than once a week, My GP wanted to test my mma levels due to a higher level b12. He felt that if my mma levels were within normal range, I would not need more frequent injections even though I still have neurological issues. My point is you can still have a functional b12 deficiency even with normal mma and b12 levels.
Ordinarily, MMA levels would start to decrease once loading set of injections are started. So you would expect an MMA level to be back within range as soon as the backlog is cleared, certainly by the time the loading dose is completed. Unless the MMA and the B12 were not forming the required link.
I am sure that more ways to have a functional B12 deficiency problem exist. More ways for B12 to not get to where it is required to relieve symptoms. A long way from food to cells and tissues.
For instance, an ENT consultant once told me that saliva duct strictures would compromise haptocorrin - which has the task of allowing B12 from food (extrinsic factor) protection from stomach acid - so curtailing its journey. This is the first stage of the B12 journey and one that is rarely mentioned or shown on diagrams.
My MMA remained raised for three years, in spite of frequent B12 injections.
I doubt there is one answer for all of us. Keep looking.
Neurological problems with a B12 deficiency cause would need EOD injections. The nearest I got was 2 a week - and this worked so well that my GP requested that injections continue at this frequency - and that went on for six months.
Hello! GP is going to run the various tests one month after the last injection. I still have another two weeks of weekly injections. Hopefully it doesn’t mess with the blood test too much. But regardless I am considering just self injecting because it appears to be difficult to convince doctors in the UK to stick with weekly injections! I am terrified to self treat though, but I just need to get over the fear and give it a try.
It is a difficult choice - until choice is removed completely.
Bravery can be allowing yourself to deteriorate deliberately in order that a GP might see what that looks like - they usually want to see blood evidence ! Bravery can also be deciding to take control over a lifelong treatment to get better symptom control over an incurable condition.
To me, the second choice is the favourable option, but something that seriously affects your quality of life needs mulling over.
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