Hello there, I was diagnosed with b12 deficiency late August of this year. I received loading dose shots daily for a week, and since then a shot every week. I've read on forums that the neurological symptoms can get worse as your body is trying to repair damage to the nervous system, which I am experiencing.
However the past few weeks the symptoms my dr said were part of the anemia have gotten worse and worse. They initially got better a few weeks in. But yet again I am far beyond exhausted all the time, I'm getting breathlessness and air hunger again with the lightest of activities (like just getting up to go to the bathroom or just simply standing), and higher heart rate again as well. I have palpitation episodes about 15-30 minutes after eating (no matter what I eat or when, I've tried tracking it all) for about 30-60 minutes. That never went away but got a bit less severe for a while. The dr suspected that was part of the anemia as well, as more blood flow was being directed to the stomach, so the heart has to overcompensate when it was already having trouble because of the whole anemia thing.
My doctor doesn't know much about this whole -b12 rigmarole. The only reason she knew about the loading doses was because she talked to a former colleague who had severe -b12 after I was diagnosed. I'm wondering if there is a reason for the anemia symptoms getting better then worse? Or if there may be another issue at play here. I have about 16 chronic illnesses and conditions at this point, with a few I'm still tracking down diagnoses for. So another wouldn't be a huge surprise. I just wanted to see if anyone here has had the same experience and if there was a b12 related reason, before I go chasing this rabbit down a hole.
Thank you
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Raiinbow
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Its actually very difficult to tie symptoms down to a specific element when talking about B12 - the worsening could still be a neurological effects through the autonomic system - the system that controls things that we do without thinking, like breathing.
It could also be that you have two types of anaemia going on - B12 causes larger rounder red blood cells - iron deficiency causes smaller red blood cells and one can actually mask the other. PA is an auto-immune gastritis that affects the mechanism that the body uses to absorb B12 from food - but it also results in lower stomach acidity and can contribute to problems absorbing other vitamins and minerals - most commonly folate and iron.
The palpatations may be an effect of low stomach acidity - which would fit with the onset being related to eating - the presence of food encourages the production of gastric juices but if there isn't sufficient stomach acidity to stop the production of these juices then they start washing back giving you heart burn. Taking something acid (a little fruit juice in water) will probably resolve the problem in this instance. It certainly does the trick for me - before it would sometimes be so bad that I had to throw up to clear my stomach in order to make it stop - not something I would recommend.
My iron and folate were in normal range when I came up deficient for b12. But I saw my primary today and asked to retest folate, as well as B2 and magnesium. Should have asked for potassium levels but I forgot.
I have had some suspected dysautonomia issues (I'm more prone to have forms of dysautonomia, as a person with Narcolepsy) but I didn't know -b12 could affect that as well. That's good to know.
I've actually suspected low stomach acid for quite a while. My GERD/reflux was made much much worse by acid reducers and PPIs, and much worse by a strict low acid diet that I had to be on for another medical condition for a while. But a little better with apple cider vinegar, and bit better still with HCl + Pepsin. However I know supplements aren't risk free and stomach acid may be a tricky thing to play around with. So I wanted a diagnosis and hopefully an explanation before taking it long term or upping dosage.
Due to other various symptoms I somewhat suspect low stomach acid may even be causing a SIBO (small intestinal bacteria overgrowth- right bacteria, wrong spot in the intestines, basically). However the gastro I saw said I was beyond her ability and wanted me to go to a teaching hospital or some place where they could run a variety of tests. If low stomach acid is accurate, that would certainly explain quite a lot.
Definitely going to ask for PA testing, as so far my primary has made no effort to find out WHY I'm deficient and instead just concentrating on the injections. I've also had IBS for 18 years so far. My digestion system is kind of a mess (I mean my whole everything is, but still). Hoping to find answers. Just waiting on the referral for the new gastro and they're taking their time trying to find me a place, which is frustrating. As some of the gasto symptoms can be quite distressing and I get them daily. (I'll spare you the long list of symptoms!)
Its easier to rule out other causes than it is to prove PA because the test for PA (Intrinsic Factor Antibodies) isn't very sensitive and produces false negatives about 50% of the time. Treating the B12 with injections is the right thing to do in the case of an absorption problem. Confirming PA (if you can) is useful because then you know to be monitored for NETS
Here's an article that says that b12 deficiency can mask depleted iron reserves. It says that
"Our results indicate that iron deficiency is common in patients with cobalamin deficiency, and that cobalamin deficiency can mask iron deficiency. Therefore, we suggest that all patients diagnosed with cobalamin deficiency should be screened for iron deficiency, particularly after cobalamin therapy.
Iron levels may show up ok before b12 treatment, and drop after treatment.
Wow, I didn't know that! Indeed my iron looked normal on the test that diagnosed the -b12. I'm hopefully going back to my primary in a few weeks. I will ask if we can retest iron. She kind of rolled her eyes a little today when I asked to retest folate, as well as B2 and magnesium today. But whatever- clearly I'm doing more research on this than she is, and I want to make sure the balancing act in my body to restore b12 levels is going okay. I don't know why testing for various vitamin levels is like pulling teeth with doctors. Anyway- Thank you for this information!
Update for anyone who is looking back through the form: Turns out I may have POTS (postural orthostatic tachycardia syndrome), when I thought it was just -b12 symptoms. Awaiting testing, but symptoms are a dead ringer. Especially the 30+ BPM increase upon standing within 10 minutes (usually a lot less for me), then lowering again when sitting. For reassurance, as far as I know, -b12 is not a risk for developing POTS. The deconditioning from the fatigue of -b12 may have just made it a lot more obvious. I have another condition (Narcolepsy) that predisposes me to developing autonomic nervous system dysfunction (or dysautonomia).
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