I'm wondering if any of you have experienced this... I've noticed over the years that (yep, YEARS!), after I get my monthly B12 injection (cyanocobalamin), I almost always go through 3 to 5 days of feeling incredibly tired (I could sleep 12 hours a day), having a sore throat, hoarseness, shortness of breath, dizziness, and headache. The sore throat/hoarseness part is annoying (I always wonder if I'm getting sick).
Would this be some kind of rebound effect, like an immune (or autoimmune) reaction to the injection/B12?! Is the injection somehow requiring my iron/ferritin (which is below 45), possibly causing these symptoms? It happens almost every single month, post-injection... and while I believe in coincidence, I am questioning it now. :/
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annagaia06
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Hmmm, that's interesting. I wonder if you need more frequent injections to keep you "leveled" so that each month doesn't produce such a dramatic result. Also, have you tried other forms of cobalamin? Not an expert at all, just thinking out loud. I hope you find your solution!
From my experience the relationship between B12 and iron is a crucial one. A below 45 ferritin number for someone who is B12D may well be too low. B12 injections suck up iron/ferritin to make healthy blood. I began heme iron supplements (Three Arrows) that I read about on this site and the effect has been quite dramatic, along with B12 EOD. I'm working on a ferritin count of between 80-100. Some here say 50, but my ferritin level was at 99 about 5 years before B12D was diagnosed. I felt well then so that's my target number now. It's possible too that you need more B12 and that you're body is still trying to catch up on the original B12 deficit.
My GP said, very early on in B12 deficiency treatment, that ferritin below 60 can cause iron deficiency symptoms. Years later, my Oral Medicine consultant, trying to treat my angular cheilitis and burning tongue, preferred ferritin to be above 80. Can be hard work keeping it there or above.
Have been lucky so far with regular monitoring of ferritin, folate, thyroid and vitamin d etc. but now getting more difficult as no regular GP and less appointments. Plus no funding for routine checks, and blood test form asks GP to state reasons for requests - so likely audited.
I agree that it is possible annagaia06 could be feeling the effects of undertreatment of B12deficiency. Although I need far more frequent injections than this, if I am a little late with an injection or have used up more than the usual day-to-day requirement, it often has less of an effect on me when I do inject.
GP's are now strictly monitored and required to stick with tory Government austerity. So all the suffering we have put up with have been due to an unnecessary political decision 14 years ago by an incompetent government.
My GP realised quite early on that I was unresponsive to the B12 injections given at the usual frequency (6 loading then 1 every 3 months maintenance) and then found that my MMA was raised despite B12 injections. Having also tested for renal problems and found none, she (under guidance) restarted my B12 injections at 2 a week - the nearest she could get to EOD. Finally, visible improvements, noticed by all: friends, family, employee, workmates and delighted GP. She made sure that ferritin and folate had been treated - and continued to monitor these without B12 being retested. She ensured that this treatment frequency continued as it was clearly working. Nurses not so keen but never mind.
This was back in 2016: prior to Covid and the subsequent changes to GP access and continuity of primary care. I'm not sure that a GP, even with her experience, would be given that degree of autonomy now, within a primary care practice. This may explain why so many of the best GPs left their practice, post Covid.
I cannot imagine a time now when we will have a choice of GP, ensuring continuity of care and monitoring of likely additional problems. Getting to actually see someone is difficult enough, but ensuring that you see a GP who already knows what you look like at best and worst can be a huge relief when you have memory and cognitive issues. A return to that situation seems unlikely.
I was told by a receptionist that the current system was a 5-year trial. It is already obvious that it is not working - and gone time for this experiment to be over. If success is measured by less patients contacting the surgery, then it has probably worked. If it is measured by general health improvements within the same group, emphatically not. If the real causes for experienced GPs leaving their jobs could be factored in, there are few winners on either side. They don't want this situation either.
We all knew that the NHS was in trouble before Covid. We were unaware how much this pandemic was going to be used, even years later, to further reduce access to NHS healthcare.
This is curious, to say the least, in that these symptoms are short duration and just after receiving EACH monthly B12 injection. And for years...
It is known that after B12 injection therapy is started that "healing symptoms" some similar to what you mention occur. However, after years of injections you should have healed what is going to heal and now be maintaining. You might want to try increasing your periodicity to once per week injection.
I have read but have no personal experience that on very rare cases people do have an allergic reaction to some forms of B12. I'm no expert here but maybe consider changing to Methylcobalamin? I'm not sure of your location but it is available in the US. I switched from Cyano to Methyl, a bioactive form of B12, several years ago and inject every 4 to 7 days.
Regarding your Ferritin:
I checked your Bio and you don't say whether you've been diagnosed with Pernicious Anemia, a late stage manifestation of Autoimmune Gastritis (AIG). If you have a confirmed diagnosis of this it is a chronic inflammatory condition where Ferritin alone is no longer a valid marker. Your CBC and hemoglobin counts can look normal (no microcytic anemia) but it's possible with AIG to still be iron deficient. My physician and I keep my Ferritin above 100 where the normal low is 30. If you have AIG then you may want to have a complete serum iron panel done. See my post on Iron Deficiency Without Anemia (IDWA).
Could well be due to the cyanocobalamin. Try hydroxocobalamin. If you want to try methyl be aware that it interferes with sleep in some people. I have no experience of adenosylcobalamin, it's not in common use anyway. I don't know your needs, but maybe more frequent injections would help.
It could be a reaction to the the preservatives in the brand you are getting. I would ask for a different brand just to see if there is any change. I use cyanocobalamin too and have noticed some brands sting more than others because of the preservatives.
Cyanocobalamin does contain Benzyl alcohol as a preservative something less than 2% I believe. Depending on the percentage I suppose this would cause a stinging sensation. Another cause of stinging is not letting the alcohol swabbed skin to dry for a few seconds prior to injecting at that site. Methylcobalamin, however, contains no preservatives, is the most bioactive form. It does require some special handling as in refrigeration and store out of light.
Thank you Rexz. I haven't tried methyl yet, not sure how to obtain it as I am in the US. Any links/ resources would be appreciated. I dont have an current RX. I order from Germany.
All B12 ampoules need to be kept in the dark and also Folic Acid tablets. All meds should be stored under 25 degrees Centigrade. I prefer the top door of my fridge for ampoules which keeps them at a very stable 10 degrees as it seems its possible for them to deteriorate if storage temperature fluctuates.
Actually, Cyanocobalamin can be stored at room temperature, is much less susceptible to light and has much longer shelf-life in other words much more stable than Methyl.
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