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AF doesn't just affect the over seventies

john-boy-92 profile image
26 Replies

I'm trying to persuade clinicians at the local Practice, to use a finger oximeter with a pleth display to pick up arrythmia. This would be when a patient has a face-to-face about anything. However, I'm not getting anywhere as there isn't a national AF screening policy. Cambridge University kindly sent me details of the SAFER study into AF and, I was surprised to read that participants must be 70 or over: I had my stroke at 69, so I would not have been captured by a study using the same protocol. I would bet that many of us on Health Unlocked had AF before the age of 70.

One of the benefits of being a lived experience particioant in University AF and stroke studies, is that now we can contribute.

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26 Replies
Jalia profile image
Jalia

I was 48 when I was first diagnosed ! I thought I had a chest infection which made me breathless, hence my visit to GP.

Visitingcat profile image
Visitingcat in reply toJalia

I had exactly the same!! Had an awful cold and after about a fortnight I could barely finish a sentence speaking without running out of breath. I took loads of cold remedies ( the worse thing I could have done ) before I’d go to the docs.

When I did and she said you have a heart problem not a chest infection I was really shocked. It had never occurred to me, it explained why I’d felt awful foe a while and struggled with stairs, I still had a stroke before being put on warfarin though, luckily made a very good recovery. They left me in Afib for months before I had a successful cardioversion. I was in my late fifties.

Jalia profile image
Jalia in reply toVisitingcat

Glad to hear you made a good recovery from your stroke. Stroke is what the majority of us fear most .

I must say I was absolutely mortified with my AF diagnosis. I went to the GP expecting to come out with an antibiotic script and instead was given an ECG and referral to cardiologist !!

I was put on Warfarin in my late 50s via a phone call from hospital doctor and have been on it for about 20 years with no problems . I have a Coaguchek outfit which is a great boon.

john-boy-92 profile image
john-boy-92 in reply toJalia

I was lucky that my limbs were not affected. It's been a long road with no support from the NHS; many stroke-survivors and carers will tell you a similar story. As for the DVLA, I note the Public Accounts Committee report on the DVLA backlog mentions that the disabled may have a case for discrimination. In the last 18 months, many Government departments, Universities, and charities now engage with people affected by stroke. It's a very welcome change. May brings a major reorganisation of stroke services in Bristol and the surrounding area that will be brilliant. The task now is reducing the number who have strokes. The NHS really needs to address the identification of AF as a potential pathway to a stroke. Looking at the replies in Health Unlocked, we need to look at a wider age group than those who are 70 and above.

Gumbie_Cat profile image
Gumbie_Cat

It is really annoying. I worry for my own children now, as it’s very prevalent in my family. I did get tests in my fifties, which never managed to pick it up. This followed on from my two older sisters having strokes in their mid sixties.

It even got noticed with a pulse oximeter at the Biobank, but the GP just found a steady pulse. I had a retinal vein occlusion - still tests failed to show it. Until my Apple Watch picked it up last year, at 67.

It has progressed rapidly, turned persistent in October, failed ablation in December and now I’ve been told that further ablations or even cardioversions will not work, and it would need to have been detected 10 years earlier. Sigh - I really tried.

Coming to terms with it, and accepting rate control only - as there’s nothing else I can do. It doesn’t help that it’s shrugged off with ‘it’s really common’.

Thank goodness for the anticoagulants, and that I didn’t need to wait for a stroke first.

Barb1 profile image
Barb1 in reply toGumbie_Cat

As its inherited your children are entitled to be tested, if you are in the UK.

Gumbie_Cat profile image
Gumbie_Cat in reply toBarb1

I’ve never been told if it’s possible. Each time I mention that it seems to run in the family, I’m just told it’s very common. Though I thought it was comorbidities that had increased the frequency.

Barb1 profile image
Barb1 in reply toGumbie_Cat

Both my adult sons were tested . One ok. One come back in 10 years. He did and has now been diagnosed in his late 30s. My sister and her children were tested as well. Eldest son, same age, now under cardiologist. Familial testing saves lives.

BobD profile image
BobDVolunteer

AF Association spent a lot of time many years ago trying to get screening for AF by simple pulse check at every GP visit. especially annual flu jabs. This was not age related, but for everybody.All part and parcel of our campaign to reduce unecessary strokes which cost the country so much. Never succeeded so doubt there is much chance now with extra pressure on NHS.

Some years ago I was given access to two GP centres and portable ecg where I took over an office and invited people in the waiting room to come and have an ecg taken. Over two days I tested 58 people and found 7 cases of AF, 5 of which were previously undiagnosed.

50568789 profile image
50568789 in reply toBobD

Went to an AFA talk yesterday about current activity in West Suffolk targeting increased detection using Kardiamobiles. Doing a great job to reduce potential strokes in people who have AF but don't know it.

Hiya,

I was 65 when first diagnosed - however - I was lucky as my symptoms gave the impression I was going down with flu ( and why not, it was early January 2010, so why wouldn't I go down with flu ). In other words the flu like symptoms were disguising the AF beastie. That said, with the benefit of hind sight I feel I had some cardiac issues well before that. That day, my BP (in a matter of hours) dropped from 136/80 ish down to 76/50 and I thought this was an Apollo 13 moment. My GP saw me immediately and sent me to A & E - the rest is history.

I have since discovered many heart and stroke related issues on the paternal side of my family going back several generations.

John

Gumbie_Cat profile image
Gumbie_Cat in reply to

There were quite a few strokes on my mum’s side, and I knew that an uncle on my dad’s side died of a heart attack in his 30s. Have only recently found that most of the cousins on my dad’s side have A Fib.

Starting to get a sense of inevitability!

LaceyLady profile image
LaceyLady

Hmmm, I’ve been a Complementary Therapist fir nearly 25 years, getting GPs to co-operate is nigh on impossible. I was trying to take part as a therapist in trial using Reflexology, I needed volunteers, so approached my surgery. This trial was being conducted by a Consultant, but permission was denied from my very own GP! I was very annoyed with him. I think some might be more amenable now. I bought a BP machine for the specific use on my patients. High BP is insidious and as you know dire consequences. I could see if it appeared high and send them off to their GP. I had a lot to offer my patients and their GPS but Co-operation was thin on the ground.

LordGabriel profile image
LordGabriel

I was 52 when first diagnosed.

Fullofheart profile image
Fullofheart

I was 29...took years to get diagnosis.

Tommyboy21 profile image
Tommyboy21

52 when diagnosed. Probably at least 10 years before with symptoms ignored by GP

Auriculaire profile image
Auriculaire

It is just part of the inferior treatment you get on the NHS where there is very little emphasis on preventative measures . Here in France you cannot get a repeat medication prescription without a doctor visit. So if you have any condition that requires ongoing medication you have to visit your doctor at least twice a year even if you feel well. At every visit my doctor listens to my heart and lungs , takes my blood pressure and pulse and examines my abdomen. When my husband goes he is asked a whole series of questions about sleep, bowel function etc. - maybe because the doc thinks men are more reticent about flagging up symptoms! Once a year for me or every 18 months/ 2 years for him we get a prescription for a raft of blood tests ( results automatically come to us in the post). And we only have to wait 2/3 weeks for this "not - ill" appointment! Our GP would find it incomprehensible that these simple measures were not taken at every appointment but then he would not dream of limiting his patients to 10 minute appointments with unscientific " one problem at a time" restrictions. It is now more than 20 years since we left the UK and the 2 GPs I have had here ( the first one died suddenly) have been miles better than any I had in the UK . And there I thought at the time I was reasonably lucky with GPs. Not like the shower my poor mother had.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toAuriculaire

Hi

Interesting.

I complained about a new senior dr whom when I met the first time answered that I had many diagnosis. He told me that I had to choose which one to talk about.

I reminded him that each patient needs a holistic overview.

Mine was stroke meds, AF meds and thyroid Thyroxine meds.

Out of that I always get a double appointment.

cheri JOY

My AF was never diagnosed earler in the year but I had a high systollic level.

But putting me on Lor.... (a companion to metroprolol.) Protein showed up

in my urine.

I stopped it.

cheers JOY

2learn profile image
2learn

hi, totally agree about early testing and all preventative tests and screening for everything. In the long run it would save NHS lots of money for massive ops and care for heart, cancer etc. First diagnosed with AF at 63 after pulse went up to 200 in gym. But think I probably had episodes in my 50s that didn't last.

Dancing135 profile image
Dancing135

I just turned 59 when my afib was found. I must of had afib a long time before that, as I bought a cardio watches straight away it has always showed afib every day since. Looking back now I did have a few bad episodes from the age of 44 not realising at that time what was wrong I should have gone to my GP much sooner.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I had my Ischaemic Embolic Stroke at 70!

But mine was due to AF due to undiagnosed Thyroid Cancer.

The finger pulse peg does just that but AF is irregular heart beat.

A medical engineer might develop a peg that does that. But AF is not

always picked up on ECG as the time is short. The peg would need to

be on a long period and therefore there would a risk of shutting off blood stream and making a clot. (15m maximum like a tornique).

Just thinking!

Cheri. JOY

Bell50 profile image
Bell50

I was 57 when I was first diagnosed and at first was told my chest pain was muscular I then pestered the doctors as my chest pain was not going and had an ecg which showed a heart rate of 166, I have since been told that an episode when I was 34 was probably the start of it. I am 60 this year and am now waiting for my second ablation as last Novembers hasn’t worked.I also find it interesting how many couples have Afib as my husband has it too his came on from a virus he had on his heart he has just had his second cardioversion.

BlueINR profile image
BlueINR

TTBOMK best way to detect an arrhythmia is with an EKG. Pulse ox, even with pleth, not always that reliable.

john-boy-92 profile image
john-boy-92 in reply toBlueINR

I agree, but the problem is getting GPs to use an oximeter lot alone a five lead ECG. There was just a chink of light yesterday when I went to have my six monthly bloods. I chatted to the nurse about AF and using a finger oximeter. Lo and behold, she took an oximeter out of the drawer and said it was hers. When my SpO2 was at 76% at the same Practice, it was a GP with a finger oximeter that detected it and sent me straight to the hospital respiratory team.

Anyway, my email is with the clinician who set up Bristol Health Partners Stroke Health Integration Team. The stroke system that was set up for the Bristol area goes live on 17 May; brilliant! However, let's refuce the 15 to 20 people a week coming through the front door with stroke. It makes no sense to have a great stroke service without trying to reduce the number with strokes.

Tomred profile image
Tomred

I was diagnosed in my mid 50s, now 62, but i believe i first took at around 30 , im on bisoprolol and dronederone and ep says no anticoagulant until im 65 as chads score 0, never thought id say i wish i was on medication[ anticoag] with 2-36 hour bouts once per week , its very worrying.

Marvel3000 profile image
Marvel3000

I'm 42 no one picked my AF after attending A&E 10 times in a period of 3 months with syncope. They kept saying it's postural drop or my meds or stress. I collapsed ended up in resus & 10 days later came home with a dual chamber Pacemaker. So yes completely agree with you about early detection. The long term cost benefit to NHS will be worth it.

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