Atrial Fibrillation: l have recently... - Pernicious Anaemi...

Pernicious Anaemia Society

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Atrial Fibrillation

Helliborous profile image
16 Replies

l have recently linked my AF with lack of B12. I was diagnosed with AF and Pernicious Anemia at around about the same time, prescribed BetBeta Blockers and Warfarin for AF and B12 IM every 3 months. Looking back I know that the AF flutter would start when I was nearing the B12 IM. During lockdown I injected more frequently and since then have not had as many episodes of the AF. I now seem to only start with AF very very occasionally. Has anyone else had any experience with this. Thanks

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Helliborous profile image
Helliborous
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16 Replies
Orchard33 profile image
Orchard33

I had palpitations as my undiagnosed PA worsened. I'm now SI-ing EOD and have been for 10 months and the palpitations have slowly disappeared.

Helliborous profile image
Helliborous in reply toOrchard33

Thank you Orchard, were you prescribed a blood thinner at the time. I was but I think that was also due to my age .

Orchard33 profile image
Orchard33 in reply toHelliborous

I never saw a doc about the palpitations.

Helliborous profile image
Helliborous in reply toOrchard33

Thank you Orchard

B12life profile image
B12life in reply toHelliborous

I had the exact same experience as Orchard33. I inject daily and now no palpitations after 1-1.5 years.

B12 recovery is slow. But the frequent I jections were definately needed for my full recovery. I am not vegetarian, so mine is a metabolic issue that prevents absorption when consumed orally.

I also had a high resting heart rate above 100. That is now down to low 70s.

HeartyGilly profile image
HeartyGilly

my B12 deficiency was also diagnosed at the same time at AF.

Helliborous profile image
Helliborous in reply toHeartyGilly

Thank you HeartyGilly, were you prescribed a blood thinner at the time. I was but I think that was due to my age .

HeartyGilly profile image
HeartyGilly in reply toHelliborous

Yes, and I still take them, even after an Ablation.

MorningMist profile image
MorningMist

A few years ago I had frequent ectopic heart beats, runs of two and three for long periods and a holter monitor showed I was having over 6,000 ectopics a day.

I was prescribed beta blockers which I didn’t take, hoping to reduce stress or any triggers I could identify. After I had b12 injections I realised after a while that I was no longer having the ectopics so there must be a connection that I was unaware of.

Certainly the cardiologist I saw was unaware of a connection. I had extensive tests, echocardiogram, stress testing etc but not a single blood test. I can’t understand how a specialist can view his discipline in such isolation with disregard to the rest of your body’s systems. But it explains much about the state of healthcare here.

Cherylclaire profile image
CherylclaireForum Support in reply toMorningMist

I also had ventricular ectopics and on a 24 hour monitor, 4,000 episodes were recorded. It was not considered to be a problem that would require a cardiologist. They were quite happy for my GP to deal with this.

Apparently, these can start for no known reason, and stop without reason too. Although it can be disturbing, especially when being woken up by them in the night, they do not lead to or indicate a more serious heart problem. For this reason, I opted not to take the statins I was offered. The heart problems went away, and now, as before, just an occasional thump that does not concern me.

I always assumed that this could be a "B12 thing", but no-one mentioned a connection to me either.

When I had a recent Lung HealthCheck scan, calcification of my arteries was discovered, and my GP surgery was notified. A new GP, one who I'd not met before, wanted to put me onto statins. I asked for blood tests and she agreed to wait until the results were in.

The receptionist called me again, regarding a telephone appointment to discuss my cholesterol. I asked for a face to face appointment.

I really have no idea yet of the extent or severity of the calcification - and assume this case was returned to primary care to find out - so will be asking for some clarity, even if this means waiting for a consultant appointment.

I'd like to be able to make an informed decision about the statins.

MorningMist profile image
MorningMist in reply toCherylclaire

If b12 isn’t on the radar of many doctors it won’t be regarded as the reason for numerous symptoms that otherwise informed people connect it to.

I agree with your caution over the statins. Maybe calcification can be reduced with lifestyle improvements. If you have room for any. I’m sure I do. I am ok most of the time but there’s a constant risk of relapse. 😄

MorningMist profile image
MorningMist

By which I mean that specialists generally guard their own medical territory and don’t confer with people in other fields. To our detriment.

Helliborous profile image
Helliborous in reply toMorningMist

Thank you MorningMist, I certainly think there is a connection when I asked the heart consultant his reply was" that's very likely if you are nearing your B12 injection" so you think they would start to address the frequency of them.

MorningMist profile image
MorningMist in reply toHelliborous

Good to hear he knows there is some connection. And hope he puts it down to a physical reaction, not anxiety!

Cherylclaire profile image
CherylclaireForum Support in reply toMorningMist

Yes, exactly.

I am glad that the Lung Healthcheck people found this problem, and brought it to the attention of the GP surgery - but are the NHS equipped for all these incidental discoveries ? Clearly this is outside the remit of the group employed to check for early signs of lung problems. Wonder if the number of incidentals will be also be recorded in their findings ? I'm assuming that part of this is for the research opportunity- probably for future health insurance purposes.

Space for lifestyle improvements ? Bags of room. But expecting some pressure to shut up and take the statins !

wedgewood profile image
wedgewood

Yes , I had those palpitations for years , every now and then , and sometimes would faint . GP said there was nothing wrong with me , and told me to ignore what I called my “ funny turns” .

I eventually went to see a private GP when i became unwell with numb feet , breathlessness , exhaustion and confusion , because my own GP always said there was nothing wrong with me , and even lied about my B 12 blood serum reading , saying it was normal ( 150. and below range )

Tests by private GP revealed I had Pernicious Anaemia(Positive Intrinsic Factor Antibodies) My GP would only allow me I B12 injection every 3 months , which was insufficient to keep symptoms at bay . So I was forced to self inject once a week . No more palpitations or other symptoms, except that feet feel constantly that they are burning ( improvement on numbness) My feet aren’t actually boiling hot . I just have that sensation .

It is shocking how B12 deficient / Pernicious Anaemia patients are treated . Will their ignorance ever be addressed ?

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