inconsistent response to injections

I'm in the U.S., was doing a cyanocobalamin injection once a month, but felt I needed it more, so my husband was trained to inject. I find that I have "bouts" of fatigue, and have tracked all sorts of dietary factors, exercise, sleep, alcohol use, mood, etc for months on end, and can find no correlation between my fatigue and any lifestyle factors.

But I also can't find any correlation to my B12 shots. Sometimes I can go 5 weeks between shots; other times, I get one and don't feel any better and want another one in only a couple of days.

My pharmacist told me this week that from now on they will only be supplying the 1-dose vials; he said the 10-dose vials are no good after 28 days. So I thought that might be the explanation...that I was getting less response as the serum got older...but looking at my ridiculously detailed log, that doesn't explain it either.

I know some people do fine on a month between doses, others need it more frequently...but does anyone find that the need for doses is wildly inconsistent?

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  • First thing I want to clear up is that injectable cyanocobalamin doesn't stop being effective after only a month. The FDA, in its infinite wisdom, has mandated that injectables may now only be dispensed in one month doses. Since the most typical dosing of cyano is 1ml per month, most pharmacies now only stock that size (and charge a ridiculous price for it). The thing to keep in mind is that cyano is the most shelf-stable version of B12. As long as it isn't exposed to extreme temperatures or daylight, it will remain effective for up to a year.

    On to your question about symptoms; usually I can correlate an early return of my symptoms with too much stress, exercise, or sugar. So my experience probably can't help you too much. I do know that my B12 needs seem to vary quite a bit based on whatever is going on in my life.

    If you have other health issues, your symptoms may be interrelated. I know I sometimes find it hard to tell when my symptoms are actually from low B12. (I usally assume they are for some other reason first.)

  • I did further research and would say that the FDA is wise, actually. Apparently the reasoning is not the shelf life of the cyano, but the shelf life of the antimicrobial preservatives. It appears the preservatives only have a 28-day shelf life. Per the CDC:

    Multiple-dose containers (e.g., vials) are formulated for removal of portions on multiple occasions because they usually contain antimicrobial preservatives. The BUD* after initially entering or opening (e.g., needle-punctured) multiple-dose containers is 28 days (see Antimicrobial Effectiveness Testing (51)) unless otherwise specified by the manufacturer.

    *beyond use date

    The only time the vial is exposed to light is briefly when I get the shot...but who knows, maybe that is enough to degrade it a bit. I'm willing to pay a little extra for single-use vials if there's any question of degradation from the multi-use. Also just found out it should be stored upright, so I guess putting the vial in a bag and tossing it in a drawer is not the best idea!

    Although the bouts of fatigue didn't correlate with physical activity on a day-to-day basis, I do think that exercise has a cumulative effect. There seems to be a "last straw" effect, especially as I get more vigorous in my exercise...I've been doing the 9-week "couch to 5k" program for 5 years now, and it seems that whenever I get up to running a full 30 minutes, I get another bout of fatigue. And my latest bout was after a 3-mile hike...not an unusual hike for me, but it seemed to be the trigger this time.

    Interesting re: sugar. I'm an enthusiastic baker at Christmastime, so we've had a lot more cookies around the house than usual. Something else I should pay attention to.

    Re: other sources of fatigue: I went through treatment for breast cancer 5 years ago; my PA diagnosis was 5 months after the end of treatment, when I did not seem to recover from the fatigue from chemo. The oncologists said "Oh, you should be fine by now, go see your PCP". She ran tests for thyroid, autoimmune factors, and B12, and ding ding ding! We have a winner. Subsequent tests confirmed PA.

    But while the oncologists thought I should be fine by 5 months (actually, they told me 6 weeks), I've found numerous reliable sources that say about a third of BC patients who go through chemo are dealing with fatigue 5-10 years later. So with that plus PA, I've never been quite sure which is causing fatigue. Since I've very gradually gotten better, my assumption is that most of the chemo effects have faded now, and my occasional crashes are B12 related. But who knows. The long-term hormonal treatment to prevent a BC recurrence can also cause "extreme fatigue" and "unusual tiredness" so that could be a factor as well.

    I've been pretty good at keeping stress at bay -- honestly, dealing with fatigue is usually my biggest sourc of stress -- but I do find I do much better with a routine. Which has made me a bit of a fuddy-duddy...don't like to go out on weeknights, don't like staying out late, don't do well if I sleep in...New Year's Eve should be a real hoot again, with me in bed by 10:00!

  • not in the US but interested to hear about the hormonal treatment - I find that hormonal changes etc have a significant impact on how much B12 I need - so it may be a factor in what is going on.

    A lot of chemo uses chemicals that have a severe effect on folate levels and symptoms of a folate deficiency can be very similar to a B12 deficiency - but guess that was covered by the bloods that you had ...

    There are a couple of times when I've found myself having to use artificial progesterone and that seems to totally whack my B12 levels - or at least it did the first time - second I took a very small dose and it was manageable.

    B12 plays a part in the processes that the body uses to release energy in cells and muscles so cumulative exercise could possibly do it in terms of depletion,

  • No folate deficiency, and I do supplement that and iron daily. Was a tad low on Vitamin D this last time, so I'm taking more of that as well.

    The hormonal treatment should really be called an anti-hormonal treatment...it's an aromatase inhibitor that reduces the amount of estrogen in the body (I had estrogen receptor positive BC). I was also progesterone receptor positive, so no hormonal supplements for me.

  • Am in US too. Find that my need for B12 injections varies from one to two times a month. After 4 years of diagnosis all I can correlate the need to is extra stress, wrong diet choices, and too much,physical activity. Also have a low thyroid and figure this plays into the need as well. It took quite a while to work out what was best for me. Maybe you will find something that will help you hit your stride. For what it is worth Inalso take B vitamin supplements 100mg. The best thing I've found is high dose sublingual B12 that I got at Amazin. It is 12000mcgs. It seems really to help. Wishing you well. Also rest when your body says to.

  • I order all my vitamins from the Vitamin Shoppe, but they recently changed their rewards program so maybe I'll switch to Amazon (I get points there too). I've been happy with the Jarrow, which several people on this board recommended. I take the 1000 but they also have a 5000.

    I do indeed rest when my body says to do so. In some ways I don't feel like I have a choice, or the willpower, or whatever. In fact we're having Christmas dinner tonight because I was too tired to cook on Sunday!

    I knew someone who was a TV commercial director, and his specialty was directing small children. Acting is one of the few professions where child labor is allowed, but there are lots of regulations. He told me "Of course the regulations are a good thing, but they are also completely unnecessary in this case. When a two-year-old is done filming, he's DONE. There's no sense even trying to push to get one more take".

    Since my double whammy of cancer treatment followed by PA, I feel like that two-year-old. I used to be a workaholic, but now I find that when I'm done, I'm done. I'm finally catching up on all those TV shows I missed when I was working so much...

  • Like Jarrow as well. It has been 4 years since my diagnosis of PA. It has taken this long to begin to pace myself and not overdo. Was like you--always busy. Am sorry about the cancer you had to endure. Anyway, wishing you the best and like you are binging on Netflix and other shows that I missed. 😊🌺

  • Did you find any particular thing in your diet caused problems, or just that you feel better in general if you eat better? I try to keep to an anti-inflammatory diet, which is a generally healthy diet. Maybe it was just too much rich holiday food that did it this time!

  • I really am not a good role model for proper nutrition:-). I live alone now with several dogs. I never found that any particular food set off tired spells. However, I have decided that a low carb diet works better for me. So, I am trying to follow that and cutout sugars and simple starches. These past two week, i really went off the rails with Christmas goodies and just wound up feeling bloated--just over did it. Am back to a lower carb diet it will help me feel better. I'll bet an anti-inflammatory diet is good. This time of year we all indulge and will through New Year's Day. Am going to an open house and willl avoid unhealthy things there. I think gain we each need to try different diet styles and use the one that best fits our needs. As for things that seem to really do me in are times of stress and too much physical activity. Hope you are feeling better.

  • Hi cdragin. Just a quick comment about the 28 day rule.

    Manufacturers do recommend that multidose bottles of injectable drugs - including B12 - are discarded 28 days after the sterile seal is first broken.

    This is because each time the seal is breached to draw up a new jab, the risk of introducing bacteria into the vial is increased - the anti-microbials in the drug are only safely active for 28 days and this is therefore the manufacturers' safe limit for the lifetime use of a multidose vial. So, it has nothing to do with the stability of the B12 - rather it is to do with the safety of the 'multi dose' method of storage and the way the product is treated with antimicrobials.

    And about your symptoms - it sounds very much as if there might be something else going on other than B12 deficiency - especially as you seem to have ruled out any connection between symptom relief and your injections (by using your symptom log).

    There are many cross-over symptoms between B12 deficiency, thyroid conditions, other autoimmune conditions and indeed...many other conditions.

    You have one confirmed autoimmune condition (PA - stated in a previous post) ...and autoimmune co dictionary travel in clusters, so it's possible that you could have more than one thing going on (I also note that you say you do have other things going on...but not what) 😖.

    If your medic has not done a full health work up to investigate the possibility of other causes for your symptoms - and in particular, other autoimmune conditions - I think it would be a good idea to get this done.

    Suggest for starters: CBC, CRP & ESR, full antibody screen, folate, ferritin, vitamin d, LFT's, full thyroid screen (FT3, FT4, TSH and thyroid antibodies - autoimmune thyroiditis - Hashimoto's - a distinct posibility). Oh, and...have you been tested for diabetis.

    Sorry I'm short of time so can't do any more detail at the moment - but please post again if you have any more questions.

    Good luck.

  • Yes, what you are saying about the anti-microbials reflects what I found doing a google search. Also found some scary info about doctors using multi-use vials on multiple people and spreading hepatitis! I'm glad my husband give me the jabs!

    I've done all the autoimmune and thyroid tests 2-3 times in the last 5 years. Most recently, I suspected Sjogren's syndrome (an autoimmune disorder that causes both fatigue and dry eyes/mouth), but tested negative. The anti-hormonal also causes dryness so it's probably 5 years on that which is causing me to use eye drops multiple times a day...sometimes in the middle of the night!

  • I am in US. I inject cyanocobalamin 1ml weekly sonetimes twice per. I have an RX for 12 vials at a time. i lift weights, everyday, at least an hour plus cardio so i hypermetabolize. When i need a shot my muscles are weaker and i am out of breath. My moods are affected as well. I have become very aware of these signals. At times i feel the shot isnt quite enough so i supplement with a sublingual drop of methylcobalamin. I take a folic acid everyday in addition to other supplements. I am about four years from diagnosis...i am still getting better. It has been a ling arduous journey back to feeling good. Somedays are better than others but i have more good than bad.

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