So been back to doctor regarding heaviness in legs arms etc, shes performed ana test which has come back positive for inflammation? ??
Now awaiting further bloods for muscle related inflammation? ?
I had loading doses 11 weeks ago for low b12 not PA and now confused to above article as to whether i have too much b12 now or not enough?? Started to experience more fatigue and heaviness in past 2 weeks and tingling and muscle twitching and heart palpitations, not sure whether b12 related or something else going on??
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sbadd
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It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
Thankyou for reply yes very confusing coming across this article quite scary 2 but i guess there are many on here that receive injections frequently so i think if this was the case there would be more reports of these side effects ,so wont take too much notice of this
I get heavy arms and legs as well as joint pains, my ana was positive too and ended up getting lots of joint pains, and eventually diagnosed with rheumatoid arthritis, don’t think it’s related to my b12 deficiency though x
This is what she is testing for at the moment, thankyou for replys, how are you with treatment for the arthritis? ? As my sister just been diagnosed with this aswell, we both have underactive thyroid aswell
Totally agree with you. I read through the article and followed the reference links. It is complete fear mongering rubbish. From everything I have read so far elsewhere if you have too much B12 in your body it will get flushed through naturally and no medical professional has set an 'overdose' amount
It confuses a lot of things and a gets cause and effect round the wrong way a number of times.
Functional B12 deficiency is a real thing - that is high levels of serum B12 but not enough getting through to your cells - for some people something does happen when serum B12 is raised which seems to make the process that allows the B12 to get through to your cells where it is used less efficient but this certainly doesn't happen to everyone and, because it is about efficiency of a process rather than toxicity an effective treatment for a functional B12 deficiency is to raise serum B12 levels further. This may be one reason why those of us who have had injections find we need much higher serum B12 levels after the injections, but research doesn't really know why that happens.
Kidney and liver problems can lead to high serum B12 levels - not the other way round.
The risk of using hydroxocobalamin to treat cyanide poisoning comes from risks around hypertension but that is to do with the amount of fluid that needs to be injected into your veins in order to deliver a 5g dosage, not to do with B12 itself.
If your saw symptoms disappear and they are now back after 2 weeks that would imply that you are one of those people who needs much higher serum B12 levels post loading shots - and hence needs maintenance doses more frequently - at least every 2 weeks to make sure that enough is getting through to do everything that your cells do with B12
ANA is anti nuclear antibody test. They often use this to look for Lupus. Did they diagnose Lupus? The antimalarial you have been prescribed is also Lupus treatment
Ahh, I must have confused your test with someone else's treatment..Brain fog!!
It is one of the 'might', 'could', 'maybe' type of articles. I take the view that if I didn't do the B12 injections at the frequency I do, about 10 days, then I would be on massive doses of painkiller such a codeine, to stop the burning pains and shooting pains in my feet and hands every evening, probably ending up taking too many just to stop it happening.
Anyway I am also on Apixaban for atrial fibrillation so that should avoid the blood clot aspect.
There is a risk involved in everything and my risk assessment, for me, is to ignore such scare mongering and the cynic looks for the ulterior motive behind the article.
We all have a fatal condition, one we were born with and no-one has ever survived it, and that is life, it gets us all in the end. When the quacks cure us of that then I might listen to them with more confidence.
I have asked for research that proves B12 to be "toxic", "carcinogenic" and "highly addictive", these being alarmist statements made to me by haematologists, and I am still waiting.... meanwhile, Googling "B12" and "Toxic" will reveal that B12 is used in huge amounts as an effective anti-toxin.
If I have B12 every 3 months, I get worse quite quickly, every 2 months less quickly, every month...... etc etc, so the answer for me is to self-inject every other day, have a good daily multivitamin and mineral tablet, watch for changes and hope for a day with no symptoms at all. Having had endless tests to see what else it could be has resulted in a mire of inconclusion and conflict of opinion. I don't want to keep getting worse to prove I keep getting worse, and so I look after my own health the best I can, with support and guidance from this forum and from my GP. I still get an 8 weekly NHS injection just to keep my foot in the door, and in case a miracle cure arrives (!)
PS: Dogs with B12 deficiency get a weekly injection.
My first hematologist tried to tell me this. My new one said “NO WAY!” It’s a water soluble vitamin. Your body will take only what it can and when you use the restroom, you expel what you can’t use. This Dr also said I may need more frequent injections, due to symptoms. When I go every two months, he stated to watch my symptoms. I may need the injections sooner. He is AMAZING and I stated previously he sounded so much like the people on this site. I am getting there with knowledge of PA, but some on here are 💯 times more knowledgeable then my GP, GI and first hematologist Dr’s!!!
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