Awareness of heart beating

[Deronda77]

Hi has anyone experienced this? Diagnosed b12 deficient in May. Loading doses and gp / neurologist wouldn't give anymore. Numb foot came back in July so started SI eod to every 2 days. Symptoms improved but became very anxious with constant awareness of heart beating like its vibrating through my body. I think it might be associated with taking folic acid? Had some variable heart rates although nothing too terrible but ended up having full blown panic attacks by Nov so stopped all injections etc. Through nov got worse etopic beats and saw cardio and had 7 day monitor. He said all normal apart from etopics and apart from those i was calming down. But I was getting increasing dizziness, new balance problems and then new tittinus and symptoms of carpal tunnel syndrome. So I did an injection and improvement and then next day started on folic acid and then anxiety and heartbeat awareness returned. It feels horrible and I don't know what to do. Either stay off b12 and feel awful with dizziness etc or take it and mess with heart?? I try to get enough potassium via food. Has anyone else experienced this with treatment??

[Nackapan]

Do you need to take folic acid? Were you deficient?

I would carry on with b12 injections rather than just stop.

Perhaus try another frequency.

Good you have had your heart monitored .

I initially had bad palpitations and although left with many other symptoms they have resolved.

They made me feel anxious and breathless as I remember.

What sort of b12 are you self injecting?

It is still early days and if nothing else is found to treat i would try s different frequency of injections and stop folic folic acid for a while to see what is what.

I do not understand the doctors only giving you loading doses.

They need to tell if not b12 deficiency what is causing thses symptoms. Or see another neurologist and doctor

[Deronda77 in reply to Nackapan]

My gp didn't say take folic acid but I joined an fb group that says you need both for b12 to work. My level was a little low at 3.5. I'm going to stop folic for a while and keep the injections as spaced as I can to see if that helps. Etopics are horrible, I don't mind the single ones but its the runs of them I hate, and then this weird vibrating awareness of heart. I've ordered some Magnesium glycerate as that's meant to help palps. I wish a gp could advise but all they say is 3 monthly is enough and you need antidepressants for anxiety. I worry about relying on fb groups but have seen for myself twice now that when I try and stop jabs after 2 weeks to a month I get symptoms that then improve when I inject b12. Thanks for replying 👍

[Cherylclaire Forum Support in reply to Deronda77]

Along with B12 injections, I was given folic acid and iron for 3 months as GP said that both were low (although not out of range) and could be contributing to symptoms- in particular hair loss and bleeding gums. Afterwards, my levels dropped again - this up/down situation went on for a while and so I'd sometimes have supplements on top of my multivitamin and mineral daily tablet. My GP monitored this and told me when to stop additional supplements. It took about two years for both to stabilise at ideal levels.

I would not take anything additional to the multivits unless it was obviously low/ unstable and monitored by GP.

Do not take way more folate than that suggested daily (400ug) -and then only if indicated by a low or low-range folate blood test result. Folate level at around 15 ug/L is fine. Serum ferritin below 60 ug/L can cause symptoms despite being in range.

I was initially unconcerned about having a thumpy heart every now and then, or even suddenly waking at night with it, as I had read about heart arrhythmia being a B12 deficiency symptom - but in spring last year, it suddenly became a lot worse; several times a day and almost every night.

A 24-hr heart monitor showed irregularities: ventricular ectopics.

The cardiologist did not even need to see me.

My GP explained that ventricular ectopics were not a precursor for anything more serious (both parents died from heart conditions) and although disturbing, were not dangerous. They start for no known reason and can stop without cause too.

My GP said that Bisoprolol is the usual treatment given. I decided to wait and see instead. It went of it's own accord back to the occasional thump which I am now quite happy to ignore.

It took about a year to gradually get back to this level.

Dizziness can also be a usual B12 deficiency symptom. Mine is starting to go, and now only gets really bad when I need to take antibiotics (don't know why). Anxiety also can be a symptom. All this can be worrying. B12 deficiency symptoms would without any doubt be easier to cope with if better understood and recognised by medical professionals. Severity of this condition so underestimated.

[Deronda77 in reply to Cherylclaire]

Thank-you thats really useful info. My ferritin was 7 but is now 21, but sounds like I still have a way to go so fingers crossed that helps. My cardio said my 'skips' are ectopics from the the top of my heart - PAC's I think they're called. I have had thumps a few times a day since Feb but after the panic attacks they became a lot more with multiple beats in one go. Fingers crossed they'll go like they came! Its definitely a tough condition, especially trying to figure out whats b12 deficiency and what isn't.

[Hil101 in reply to Deronda77]

On the ferritin issue, I had undiagnosed coeliac and ferritin always below 10. I can tell you that I felt vastly better as the ferritin came up and it’s now over 80. It took years. You also get some level of cognitive impairment below about 60 and a really good consultant told me it should always be over 70. Low iron is also a cause of heart issues so all may resolve as the ferritin comes up. Fingers crossed. Good luck

[Bonjourtristesse in reply to Hil101]

Oh, mine was 20 and nobody seemed bothered!

[Dizzinessloaded]

When I started the B12 injections, I felt much worse. I persevered though and after a second loading dose and feeling poorly again after 2 weeks, I continued with injections every other day for another month. It's it then that I started to feel better and was able to go down to one a week, then one every other week and finally once a month and now 6 weeks.

It took 6 months to get to a stable place. My symptoms were exactly what you describe.

I think when you get the neurological symptoms, it takes a lot more than the 2 weeks standard load to get better.

[CoolGilly]

I have exactly your symptoms so it’s somewhat comforting that I’m not ‘mad’ - constant tinnitus in head - palpitations/racing heart - panic like attacks in night - carpel tunnel - vibrations in foot - weird feelings in body- and I have had ectopics for some years!. I take a betablocker. Given to me a years years ago for racing heart with no heart problems !!! I feel very anxious every time I speak to GP because I know they think I’m neurotic and keep suggesting antidepressants! My Low B12 found whilst on holiday in NZ in January and GP here let me have loading doses for SI on my return because of Covid. (I was former nurse) and then 3 monthly. I take multivitamin . I have good days and am my usual happy self then a few bad days and I despair. It takes over your life doesn’t it! I have been injecting weekly as GP dismissive about B12 because I don’t have anaemia ! Am making private appointment to see Neurologist soon so hope he knows something about B12 and am I honest with him about SI? From what I read here we have to be patient with neurological symptoms as they take time to heal.

But it’s hard and would be so much better if medics had better understanding of B12.

[Cherylclaire Forum Support in reply to CoolGilly]

Takes a long long time but you will get better than this. There is more to be had.You are an ex-nurse- and know how to take good care, so apply that to self !

Yes, it would be better if they knew more -I was shocked about how little even consultants knew - it means that we have to do a lot of reading, ask a lot of questions, keep pushing, all while very ill. Helps to have someone with you: partner, friend, family. Especially when appointment you've been waiting for for months falls on a "bad day" !

Let us know what the neurologist says- and good luck.

[pvanderaa]

You may be experiencing the side effects of nerve repair. These symptoms may return after each injection and appear to be quite severe.

How much folic acid were you taking ?

When it felt like your heart was racing, what was the pulse at your hand? I get a symptom of feeling like my heart is racing as I drifting off to sleep which wakes me up in a sweat. Pulse at the arm is actually slow and normal.

By feeling my own actual pulse, my brain figures out the illusion and stop cranking out the adrenaline triggers.

Nerve repair can be counterintuitive. Make sure you stick with a schedule and routine of supplements and injections. Also keep a logbook of severity of symptoms from the same time each day.

[Ryaan]

I had to reduce to 1 injection per week as 3 injections per week were causing similar to what you said so kept on 1 per week and was fine. I doubt it’s from taking Folic Acid as I was prescribed 5mg for a good number of months but everybody is different.

From my personal experience it’s from too much B12 like every 2 days which causes problems so you just need to cut back on injection frequency.

[Deronda77 in reply to Ryaan]

Thank-you. Did you mind if I ask if you got ectopic beats too or just an awareness of your heart beating / vibrating feeling?

[Ryaan in reply to Deronda77]

Yes I had heart palpitations, rapid heartbeat, shortness of breath, tightness in chest etc due to injecting too frequently (3 x week). But I was fine once I cut down to 1 per week and took me 3 -4 months to feel a lot better as I was very low on B12.