I take a weekly shot. It seems like the effects start to wear off after a few days and my last two shots were late bringing all sorts of symptoms. Should I ask about increasing frequency to every few days instead or will I run the risk of getting too much now? My last levels drawn were in the proper range. My folate and iron levels are fine. I've never had intrinsic factors drawn. So I don't know about that.
The dizziness was so bad and my hands had pains and needles and I lost all fine motor skills that I had to talk a friend through drawing up my shot. She didn't feel comfortable injecting so I couldn't take it that day. I slept for 23 hours and was finally able to draw up a new vial and inject myself, but my GP thinks something Neuro is going on and now has me on disability until I see a neurologist.
Im so frustrated with my body anymore.
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Sgboyd
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No, I keep forgetting. That sounds horrible but I should be on vit D too and keep forgetting. I'll try to remember at least that. I'm scared of a multivitamin with all my GI issues. I've been hospitalized recently with erosive gastritis and most things make me so k to my stomach since.
Get yourself one of those weekly pill cases and set a regular schedule for your pills. I split my folic acid into three doses to spread it throughout the day. You need to stay ahead of this because if you only take them when you feel a symptom coming on, it’s too late.
I ended up setting a daily alarm on my phone for the noon pills because I kept forgetting that one. Even if you forget, take the last dose as soon as you remember.
Toxic does not equal death. Toxic means damage. I'm not home ATM to look it up in the old textbook, but here is a QUICK case study on pub med for you.
If water toxicity is a real thing (and that one can cause death) then anything in too high amounts can cause damage The body does need homeostasis, but I am aware water soluble vitamins have much higher thresholds than most meds too.
I'm trying to be as informed as possible when I speak with my doc. That whole nursing thing means I can have a much more educated conversation with him than the average Joe and it necessitates me doing my homework. It's why our relationship works well. He trusts me and I trust him.
This appears to concern only one young woman who had multiple cyanocobalamin injections daily as treatment for a severe B12 deficiency. Bit vague, bit singular.
I have not heard of anyone here getting adverse reactions related to B12 injections beyond acne-type spots appearing after injecting, which then last a few days, Mainly facial, hairline, neck. These usually do not last for long.
If your folate level is fine, there seems no particular reason for specific supplementing. Keep an eye on this and ferritin levels - these can cause problems at the low end of range. If they are heading that way, don't wait for them to drop off any further.
In UK, if you have neurological symptoms, you are supposed to receive B12 injections every other day until no more improvement can be gained by this. Then one injection every 2 months as a maintenance dose. This is medical guidance for GPs regarding treatment for B12 deficiency. Not always adhered to, admittedly.
A lot of people need more frequent injections than the NHS will give them in order to control their symptoms. Some of them have done so for many years.
"Something Neuro" might well apply to B12 deficiency - which can affect hair, nails, skin, eyesight, tongue, teeth, dizziness, cognitive ability, memory, sensory perception, mood, feeling in hands and feet, ability to walk, energy, balance, blood, breathing etc etc - so a good thing that you are being sent for a neurological appointment. There could be another reason, but this seems the most likely. Best to have anything else ruled out.
I'm glad you have a good relationship with your GP. It really helps to have someone pushing for answers for you, getting referrals, checking and monitoring - not the B12, which would be expected to be high, but certainly folate, ferritin, vitamin D*.
Undoing damage can take a while so don't get disheartened.
* Please try to remember to take this : I found out by a chance Dexascan that I had osteoporosis of the spine and was then prescribed vitamin D.
They did test folate Ferratin and D. No intrinsic factors though. Only thing low at first was B12 and D. I work night shift. It is always in the basement. But I get symptoms creeping back within a few days so my doc said stay on it.
I'm in the US so we have a little more leeway with our docs buyer cannot get it over the counter like I've seen some of you do. I'm just glad he listens to me. Bonus points for him being a knitter like me. LOL
While some countries do have B12 available over the counter, in the UK it is only available through the NHS - if the frequency proves inadequate to control symptoms, we would have to buy supplies from other countries (usually Germany) and self inject. Post- Brexit, that is not as easy as it once was.
Testing negative for Intrinsic Factor antibodies does not prove you don't have pernicious anaemia. 40-60% of those with PA test negative. However, if you had tested positive, it is pretty much a guaranteed diagnosis (95% correct). Martyn Hooper, founder of the Pernicious Anaemia Society, did not test positive until the third test.
I don't know of anyone else that has had three tests, probably because many GPs are unaware of the need for a correct diagnosis or why a negative result for this test may not be that useful for eliminating PA as a diagnosis.
I have found that in general for me, an injection every three days will control most of my symptoms. My B12 if tested would now be constantly above range, but this does not give me cause for concern.
We are all different. In the column on the right-hand side of the page, you can find survey results of the varying frequencies that people use to stop themselves from being symptomatic.
Oh the article I linked was a case study. I just did a quick Google search as I'm away from my books right now. Case studies are usually limited. But if anyone wants to Google further until I get home they are free to do so.
So sorry you are feeling so badly! Did you ever have loading doses when you were diagnosed? I didn't have proper loading doses so it took me a very long time to have symptoms relieved. There are folks on this forum who inject daily. It can take awhile to figure out how often you need injections.
I didn't really have a loading dose. He had me doing oral and injections weekly though and my numbers resolved quickly as per labs. I don't think the oral does anything though especially with my alk phos being high. It's chronically high.
Once you have started injections it's important to go by symptoms and not by test results as the injections skew the test. I suffered far too long because they didn't give me proper loading doses. Check this site for information about loading doses protocol
Hi Sgboyd, I would add that I take1000 mags B12 subcutaneously every four days to keep symptoms at bay. I don’t take a multi vitamin, rather I take “B-minus” (minus B12 and methyl folate). I take 400 Mach’s of methyl folate separately I know this is an aside but since you mentioned it: As far as Vit D, I take Thorne Vitamin D and K (as MK7) The K helps to get the calcium into your bones and keeps it from clogging your arteries.
Then I take the other vitamins separately as well.
One more note regarding the lack of toxicity of B12. My nurse practitioner gives some patients 2,000 mg of B12 weekly.
I was low on B12 three times in my life that I’m aware of. I don’t know the numbers. Those were the few times I was not on sub-lingual B12. I felt no-zero difference taking the SL B12 I questioned my doctor about why my mean corpuscular volume was over 100 and he did not know why because my B12 was over 2,000 (with the SL B12). A high MCV is a classic sign of low B12 After some reading, I learned about functional B12. A friend gave me one of her B12 shots and in about four days I was feeling much better. That started me on a quest, brought me to this site and my life and health has dramatically improved
Alkaline phosphatase? It shows possible liver damage and inability to absorb B12. It also shows rapid bone turn over like when a kid is going through a growth spurt. So it's not necessarily a definite thing they look at but it does help with the over all picture at identifying PA vs other B12 deficiencies.
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