I am in about week 6 of weekly self injections. Usually for a few days after I have increased fatigue and some increased tingling in legs, arms, hands, feet, and buttocks. This time it has gone on for 4 days. Should I be injecting more frequently in order to not have this type of side effect? It kind of defeats the purpose to feel crappier for the whole week before the next injection. Any other advice? I see my GP in about a week for a follow up to see how things are going and I’m wondering what if any other tests I should ask for? My serum B12 was 237, and my ALP (alkaline phosphorus) was 34 which is low...which shows a possibility of being low in D, magnesium, Zinc, and calcium. They did not determine the cause of the deficiency so I would like to go in prepared with questions and types of tests as he is pretty good to test what I ask him to test.
The days that I feel good I am so hopeful that I am finally on the mend then to go so many days feeling so bad is so frustrating and demoralizing.
Thank you
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sammisboys
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Is it possible that what you are experiencing is from the repair of nerve damage? It takes the brain about 3 to 4 days to recalibrate to the stronger signals on nerves being repaired. The brain initially interprets these stronger signals as pain.
The worry and stress about this pain makes them appear worse and last longer. It also consumes a lot of B12.
If you can do gentle range of motion exercises and tell yourself that the pain is a good indication of the nerve repair your brain releases the chemicals to recalibrate faster. Sleep doesn’t help these symptoms and seems to make matters worse. Getting started is hard but you will find that you can keep going if you pace yourself and get on with physical activity.
Repair of nerve damage is triggered by usage of the muscles and the associated nerves.
One tool is to start a logbook and record when the symptoms show up. Reset and treat the jab as day zero each cycle. You will see your pattern of “good” symptoms repeat in a sequence each time.
Once you can recognize these counterintuitive symptoms and convince yourself that they are good, you will regain some control and not worry about them.
I believe it is very likely that it is repair and I have noticed all the things that you say as far as sleep not making it better, the more I stress the worse I feel, and the days that I can convince myself it is part of the process I feel somewhat better. Thank you
Gentle exercises, swimming or physical activity help stimulate the nerve repair as well as help convince the brain that it is all an illusion.
My post injection symptom is ravenous hunger from my vagus nerve to the stomach. I have to ration my food of jab day to keep from eating everything in sight.
If you are on B12, your folate and minerals will get used up as metabolism kicks into high gear. Testing should show them at the lower end or below normal.
When you start, begin with 800 mcg folic acid and work up each week to what you can tolerate but never more than 5 mg per day. Spread your folic acid throughout the week as evenly as possible.
Also take a daily multivitamin for the minerals and metals. Or eat a banana for the potassium.
I can’t tell you all your symptoms or how you will react but use the logbook and take things slowly. Typically stick with something for a week or two before changing things up. This allows the hepatic loop ( small intestine, portal vein, liver, bile, duodenum and back to the small intestine) to stabilize and/ or detoxify.
You are beginning the process of treating by symptoms. Further testing will show B12 off the top of the test. You want it there to repair nerve damage.
You probably also feel like you are on a roller coaster ride so it is hard to monitor progress day to day.
The way you monitor progress is to compare the severity of a symptom on the same day between cycles or over months and years. So assess your own severity score for each symptom. You may also be able to identify a “marker” that your B12 is getting too low.
Nerve repair is very slow, if it is possible at all. The thought is that myelin sheath can be repaired but once the axon is damaged, the nerve is gone.
The logbook also helps with remembering stuff if you are having short term memory loss as well. Long term memory doesn’t seem to be initially impacted by B12D.
Set your regime of supplements and stick to it even on jab day. It is whatever works for you. You are your own guinea pig.
Provide a list of all your symptoms to your GP as well as your regime of supplements at each visit. You may get treated as a total hypochondriac like some of the rest of us have been, as more and more symptoms are recognized. But you need to build up a partnership with your GP, especially if they are providing you prescriptions.
Very sorry for a very brief reply but I must get to work...
It sounds a lot to me like mineral deficiencies caused by the extra B12 using up other resources as it heals the damage you have sustained from the deficiency. You will probably benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, maybe vitamin D ideally from your diet but possibly in supplement form too.
Please look up my profile by double clicking on my name and look under the heading "replies" for more information to others in the past.
Sorry not to be more personally helpful.
Good luck with getting the right balance of everything - you should feel good once you do!
34 IU/L of alkaline phosphatase isn'[t low. The normal range is 20-140 iU/L. Low ALP can be caused by severe malnutrition.
If you were low in Vitamin D, Mg, Zn, or Ca then blood tests will show that deficiency. Too much Vitamin D isn't normally a problem, but too much Mg can cause diarrhoea - as can too much calcium, too much zinc can deplete copper levels and cause anaemia and weak bones.
Injecting B12 doesn't use up extra folate or minerals to a sufficient extent to require supplementation. With the exception of potassium in the first month or two after you start injecting.
When you've been short of B12, to an extent whereby you have macrocytic anaemia, the body responds to the restoration of normal B12 with a burst of red cell formation. This process requires B12, folate, iron and potassium (and other things that everybody ignores). The B12 and folate are recycled - so they don't get used up. The body contains large stores of iron, so anybody who doesn't also have iron-deficiency anaemia has enough to cope with the extra demand. But the body doesn't keep large stores of potassium as too much is deadly (it is the potassium chloride that is responsible for death by fatal injection in some US states).
Once the body has finished off this burst of red cell making then it doesn't need any more folate, iron or potassium than anybody else.
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