New here! I'm 36 and was diagnosed with Pernicious Anemia 2 years ago. (Thought I had narcolepsy! But asked for a blood test and found out I had almost no B12!) ANYWAY, so every general doctor I've had always says I can only have 1 shot a month, though I would like more. (That first month when I was diagnosed and they load you up with a shot a week was like, life-changing! I felt amazing!) And I know, I've seen on other sites, people always want more than 1/month, or go out and buy/inject themselves (something I'm not prepared to do, even though I have to give my cat injections for insulin, lol) but I'd rather my doctor ok it.
But I wanted to know if this was just me imagining or if this is B12-related? I SWEAR, the week before my monthly shot, I feel like hell. Like death warmed over. I get to work and the first 3 hours are agony. I feel like my internal organs hurt, like my body just is exhausted (As a person with B12 deficiency, it's hard to tell sometimes what's "normal" fatigue, because I'm almost ALWAYS fatigued.) I struggle with thinking straight, my digestion gets horrendous and slow and painful and I struggle with getting full breaths. I'm a fast metabolizer, but even during this last week before my shot I notice drugs taking longer to work. I noticed it's usually the last half of the last week before my shot that I struggle the worst. Every day becomes worse.
Is it the lack of B12? Is it in my head that these coincide? Or is it, from an outside perspective, obviously needing B12 so I can make better blood!? What do you think?
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Clover81
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I have just had my first ever loading shots so am very new to this. I'm not on any social media but I felt I needed to find out more as had never heard of it until told it was low and needed injections. I am 42 years old and was told I was young to be low , so sorry I'm not being of help to you but I am so relieved to hear of someone else young who is going through this . My original test came out as 137 . I just wondered what yours was ? Also while I was having loading shots felt ok but for a week after felt terrible. Am starting to feel ok again now but actually feel about the same as did before shots . I just wondered how you have felt up until your down turn recently.
my first test I was at 85. I know the lower mark is 100 (average range is 100-1000) but I think anytime under 200 is terrible, at least for me.
I took the second test, the one for Homocystine levels and Methlmalonic acid, which B12 removes from the blood and I was off the charts! That's how they knew.
But it's strange, I hear from a lot of people here that the loading month of 1 shot a week they felt even worse, and I hear that's normal, so I say HANG IN THERE!! I was strange I guess, because I felt more and more wonderful each week. I was regaining so much, my ability to stay awake, to be alert, to not have as much intestinal problems, to do more than 1 thing in a day without feeling like I was hit by a truck, the twitches and the sighs/gulping for air stopped. It took a whole month, but I felt amazing! So hang in there, it feels so much better when you're loaded with B12 again!!
I am feeling much better and did yesterday too been almost two weeks now since loading doses and think maybe just had to feel a bit worse while they kicked in. Have quite a few spots which I don't care about but head feels clearer .
Hi Clover81 and Av42 Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Can you each see yourselves in the above people to try an explain why you have become B12 deficient?
It is not uncommon for some symptoms to apparently get worse before they get better whilst others may improve quickly. A lot will depend on the severity and longevity of the deficiency.
You also need to have your Folate levels tested as this and B12 help your iron to make red blood cells
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
I have been given three months supply of folic acid to take too . Apart from seeming more tired now than before injections I don't feel too awful although I do sweat quite a bit in the morning. It doesn't help that all I can think about is how I feel all the time .
It's strange for me, I've never been a vegetarian, I'm 35, I've never had gastric bypass (I have my whole stomach), I haven't used a proton pump inhibitor in years, I've had nitrous, but it's only been in tiny increments at a couple dentists, no eating disorders or alcoholism. I have a little IBS, but I stay away from trigger foods and find it gets better with B12 shots.
The only thing I can think of is that I have depression, and my whole family on both sides has people with depression, maybe they had B12 deficiencies too that went undiagnosed?
AND when I was 14 or so, I had a time when I ate fresh pineapple with Ibuprofen and spicy food, and it destroyed my stomach lining and I had to take Zantac for a year. Now that was a long time ago, but MAYBE it destroyed the part of my stomach that makes Intrinsic Factor that converts B12? Not sure.
I did recently take a DNA test and I was positive for an allele that can make your blood only use 30% of the B12 it takes in, but still at least I'd have some? And I was almost out of B12 the first time they checked me.
I have normal Folate, but my B12 nosedives without shots. I'd love to know the answer.
Thanks for replying it's reassuring to hear from someone who has had this along time as I'm assuming you have been living rather than just existing with this condition and you've still got out and about and had fun .
Clover81 - assuming that you aren't based in the UK and are being treated with cyanocobalamin rather than hydroxocobalamin as would be the case in the UK.
It isn't uncommon for people to need B12 more frequently.
If you are based in the US then you might find it useful to point your GP in the direction of a book called Could it be B12? by Sally Pachalok which talks about diagnosis and treatment of B12 deficiency,
Have you thought about trying high dose sublinguals/oral as a supplement. These work for some people and are generally classed as vitamin supplements so not subject to the same degree of regulation as injectable B12
I am in the US! And I am given Cyanocobalamin. I bet that's a factor in why I need it more!
I do have a lot of sublinguals, but I find them horrible and chalky and I never find time to not eat or drink a half hour before and after... I wanted to just use the nice liquid ones but my doctor said she'd rather I use the chalky sublinguals because they stick around longer in the mouth rather than being swallowed.
In a FUTILE attempt, I tried just SWALLOWING a sublingual every day to just SEE if that would work? But no change, I still felt like crud and needed the shot just as much. At least it made it clear my system will not absorb swallowed B12. sigh...
If you are in the US as i am, you can call around to weight loss clinics until you find one that offers straight 1000 mcg b12 shots. This is not their normal weight loss shot, which has around 300 mcg of b12 plus other weight loss ingredients. I had to call several places before i found a place that offers both.
Mine cost $15 per weekly injection. If they help you to feel better, like you felt better, in the begining, then you know you need the more frequent injections.
I GOTTA try that. I pay $50 A MONTH for ONE SHOT. I remember when I got the ampules of Cyanocobalamin my loading month, it was $11 for 3 1000mcg ampules, then the next month it was $11 for 1 1000mcg ampule!! WTF. It went up 300%? Now I have it at my doctor's and it's $25 and $25 for the nurse to inject it. Anything would be better.
(It was $11 a shot on Obamacare, because I had no job! I got a job with private insurance and it's now $50 at my doctor's. >.> Not gonna get into it, but WOW.)
I've had SEVERAL docs day "Oh we don't wanna do it too soon" like, what will happen?? My body will probably just get rid of the excess. (Per Wikipedia: "Excess B12 beyond the blood's binding capacity is typically excreted in urine.") I hear people inject themselves every day sometimes. I wouldn't go that far but 1/month ain't cutting it! I'll give the weightloss clinics a try!!
Urgh I know, my GP (in the UK) won't even give me my 3 monthly shot 1 week early if I am going on holiday as they "don't want to give it too soon" too. Where do they get these ideas?!
You probably do need the shots more frequently. I know I do. It took me a few years and multiple doctors to find one that agreed to prescribe me weekly shots. I self-administer them for convenience (and lower cost).
Like you've described, I also would have a return of symptoms in the run up to the next injection. Fatigue and tinnitus always came back.
I wish you luck with convincing your current doctor or a new one to treat your symptoms rather than adhere to a treatment regime that is not tailored to your needs.
Thank you! You're probably right! I know I probably should just learn to inject myself. A nurse once offered to teach me and I almost passed out. (I have an unconscious thing with veins, and even if this is nothing to do with veins, needles go in veins.... etc etc.) So I said no thanks.
But it's like $50 a month for me to be injected by a nurse at my doctor's office. And in the last year I have learned to treat my cat who has diabetes by injecting her with insulin x2 a day. So I've gotten used to needles.
But I'd have to do it in my hip because I can't imagine relaxing my arm enough to do it. Where do you do it, if you don't mind me asking? I really appreciate the help!
I don't think I could manage an injection one handed, which is why I don't attempt to inject into my arms. The thigh is a much easier location to reach.
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