DizzyGirls Posted January 4, 2022 Report Share Posted January 4, 2022 Does anyone have b-12 deficiency anemia, get b-12 (cyanocobalamin) injections, and have POTS? My 23-year-old daughter has b-12 deficiency anemia and gets b-12 injections. She's very I'll right now, has no stamina, lost a lot of weight and her blood pressure dropped and heart rate went up with last injection. I'm afraid to give her another one because of how she reacted to the last. Her neurologist is worried, said to see hematologist, who then said her numbers were good, even though last week she said she was anemic. Nobody knows what to do with her. This is totally unlike her hematologist to retract what she said. She's not normally like this. In the meantime her POTS and everything else is getting so bad. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 4, 2022 Report Share Posted January 4, 2022 @DizzyGirls - I have HPOTS and B12 deficiency since childhood. I get monthly B12 shots but never had a negative reaction from them. For a while I tried the sublingual tabs but they did not work and my levels dropped again, so I am back on the shots. I am not actually considered anemic but my hemoglobin levels always run low. If she is borderline anemic it could worsen around her periods. I have read from other members here that they had a reaction from B12 injections. Does she get them IM or Sq? My personal opinion is to give her another shot when its due and see how she reacts. B12 deficiency in itself can worsen POTS, so getting her levels up is very important. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted January 4, 2022 Author Report Share Posted January 4, 2022 Hi @Pistol- she gets her shots sub-q and they are twice a week. It's just really frustrating because she had started showing signs of improvement. Now she's worse than ever. The biggest thing right now is her nutrition levels/appetite. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 4, 2022 Report Share Posted January 4, 2022 I was diagnosed with low B12 in 2018. My dr started giving me shots but for some reason I tolerated them badly. Every time I had a shot my POTS symptoms would worsen quickly within about a day to the point of barely being able to stand up. My dr claimed I was experiencing vasovagal reaction to the shot (not any of the ingredients just a reaction to receiving a shot). I guess that is plausible but I have never had that happen before. After about 4 shots which all resulted in this reaction my dr recommended trying sublingual drops instead. For me, this worked well to get my B-12 levels up and relieve some of the neurological symptoms I was experiencing. I know some people with low B-12 swear by the shots only (I found that a lot when I looked into B-12 support groups), but from what I have read elsewhere, taking B-12 orally resolves deficiency for most patients. The shots just do it faster and from what I understand are ideal if a patient is severely depleted and experiencing symptoms due to low B12. I have also read on support group sites that many patients feel worse from the first few shots. I don't know why this would be. And it is anecdotal of course. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted January 5, 2022 Author Report Share Posted January 5, 2022 @MomtoGiuliana-that is very interesting! My oldest had bad POTS reactions to taking iron tablets several years ago. She had to have iron infusions earlier this year and they couldn't tilt her recliner all the way up if she hadn't had a liter of saline! My youngest with the b-12 went in for hydration today, 500mls, will get her b-12 shot tomorrow morning, and is scheduled for another 500mls on Thursday (with her sister!). It's a family thing! I just remembered, too, that my dad is going to get my mom in tomorrow for some! The three of them have EDS, as well. I know what you mean about the support groups, they really are "injection is the only way". Someone on an EDS group, however, recommended the sublingual kind. You can get it from Amazon! Sometimes people with Dysautonomia just react differently than the norm. I really strongly felt that it was an autonomic reaction she was having. My daughter has a lot of neurological with it, too. Something just needs to be done quickly to get her appetite up. Subject of a feeding tube came up today. Thank you so much for sharing your experience! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 5, 2022 Report Share Posted January 5, 2022 I could not tolerate any form of cyanocobalamin, especially injection or even nasal spray. I was critically low. At first I was told it was because it was awakening my damaged nerves, causing a lot of discomfort. Eventually I started sublingual methylcobalamin, which never caused any issues and which replenished and maintained my levels. I don’t seem to absorb swallowed B12 - we lack intrinsic factor in my family (not uncommon - a grandfather actually died of pernicious anemia). Some people cannot utilize cyanocobalamin… it’s not necessarily the case here, but it sure was for me. Something about it blocking the place where B12 needs to go while not being useful. I do have MTHFR - there are forums for that, too. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 5, 2022 Report Share Posted January 5, 2022 5 hours ago, DizzyGirls said: Someone on an EDS group, however, recommended the sublingual kind. You can get it from Amazon! Sometimes people with Dysautonomia just react differently than the norm. I really strongly felt that it was an autonomic reaction she was having. My daughter has a lot of neurological with it, too. Something just needs to be done quickly to get her appetite up. Subject of a feeding tube came up today. Thank you so much for sharing your experience! I use Sublingual Liquid Drops - 5000 MCG Supplement with Methylcobalamin (Methyl B-12) by aSquared nutrition. As RecipeforDisaster mentions not everyone does well with cyanocobalamin. I got a lot better within a month of B12 supplementation (and stopping the shots). You're welcome and I hope she feels a lot better soon. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted January 7, 2022 Author Report Share Posted January 7, 2022 @RecipeForDisasterand @MomtoGiuliana- Thank you both! I actually received our Amazon order today of the methylcobalamin sublingual! My daughter said she didn't think she could do the drops because they'd probably taste like vitamins too much, so we opted for the sublingual. Ok, so you don't do the shots while doing the sublingual? I was going to ask that. Also, these I noticed are actually 2000mcg instead of the 1000mcg of the shots. Is that too much or should I cut them in half? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 7, 2022 Report Share Posted January 7, 2022 I only used the sublingual once I switched. No more cyanocobalamin. IMO, there isn’t much risk to 2000mcg, as it’s water soluble and you excrete any excess, but you can try a half to start if you want. I take 5000mcg weekly now. You store 6mg in your liver, so it’s okay to stock up and then ease back once replenished. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 7, 2022 Report Share Posted January 7, 2022 I take 1,000 mcg a day. When I was first supplementing I took 3,000 mcg a day. I just recently had a discussion about it w my endo. He said it's not possible to overdose B12. But I would talk to a dr about dosage for your daughter. I do not think it would be needed to both do shots and take sublingual. Quote Link to comment Share on other sites More sharing options...
thedarkfields Posted January 27, 2022 Report Share Posted January 27, 2022 Stumbled onto this forum through a google search, but wanted to offer some relevant info: look into SIBO (Small Intestine Bacterial Overgrowth). A friend of mine found out about it due to her B12 deficiency and ended up telling me to look into it as well (after finding studies, etc showing increased prevalence in POTS patients). It can cause a lot of GI symptoms that overlap with POTS, but uniquely causes malabsorption, vitamin deficiencies (esp iron, B12, and/or K), and weight loss/gain. Quote Link to comment Share on other sites More sharing options...
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