New to Afib: Hi everyone, have neen reading... - AF Association

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New to Afib

waveylines
waveylines

Hi everyone, have neen reading your posts trying to educate myself. I was diagnosed with P-Afib last July after a 24hrs trace. Im truth I think it had been going on a lot longer triggered by cancer treatment five years before. Four yrs ago I was put on Cardivilol for a fast heart rate (130 resting) which started during treatment. I have hypothyroidism and have to take a full replacement dose of thyroid hormones as my thyroid doesnt work at all. Over the years the Cardivlol has slowly gone up to address my heart rate but each time it would settle then increase upwards again after a while. echocardiogram showed heart was healed from cancer treatment damage -left ventricular damage. Latest one showed Healthy heart but beats too fast.

My cardilogist decided the cardivilol wasnt working anymore and moved me to Bisopholol. After one tablet two hours later I woke up, I felt breathless my heart was racing, felt nauseas and dizzy. In all honestly I thought I was dying! Had to sit it out and after 12 hours things were calming. I spoke to a different cardiologist on the phone (mine on a three week holiday) and she said no more beta blockers. Apparrantly they can slow the conversion of thyroid hormones.....not what I need. Now on a calcium channel blocker and feeling much better, less fatigue.. Waiting to see the Abalation team mid March.

Am I right in thinking all these meds its trial and error? And am so shocked that they would give a drug that lowers thyroid conversion to someone who is reliant on thyroid hormone replacement. I was on a beta blocker for four years feeling increasingly tired all the time, blaming it on the aftermath of cancer treatment.

My GP told me that its no point using my electronic blood pressure/heart rate monitor any mire as it wont be accurate, will give false readings because of the Afib so have given it away. Is there any other device I can use?

Whats an EP?

Plus would welcome any tips on Abalation for a newby? Many thanks

32 Replies
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BobD
BobDVolunteer

Firstly an EP is an electrophysiologist, a cardiologist with special interest/training in arrhythmias.

Yes your GP is right in that elctronic BP machines for the most part are unable to get accurate readings if you have AF. There is something called KARDIA which is a hand held ECG device linking to a smart phone which is very good but be warned it can be addictive which is never a good idea with AF.

To prepare yourself for the ablation meeeting why not read our two fact sheets on this subject, Preparing for and Recovering from ablation and also the booklet on all aspects of ablation available from AF Association main website or follow some of the links top right.

waveylines
waveylines
in reply to BobD

Thanks BobD. I will look at the leaflets -mustve missed them...lol.

How easy is it to understand the KARDIA? Am not knowledgeable so do you need specialist knowledge/training to understand what it shows? Probably a good idea I didnt have one the other night as it probably would've scared me silly!! Haha!!

Buffafly
Buffafly
in reply to waveylines

Very easy, you take a recording and it gives you a result - Normal, possible AF, etc. Only a few choices but a cardiologist or EP can get much more info from it apparently.

doodle68
doodle68
in reply to waveylines

Hi WL :-) a Kardia reading may look complicated but even to the uninitiated in interpreting ECGs it soon becomes easy to see the lack of 'P' waves (the little hump which occurs before the QRS spike) and that is a characteristic feature of AF , also the band across the top turns from green (normal) to orange (Possible AF) when you are in AF. It says 'possible' AF rather than AF I guess for legal reasons rather than stating %100 it is AF without a Doctor being present .

I know myself instantly when I am going into AF but I like to confirm it is AF and not something else using my Kardia, it also helps me to keep track of my heart rate and the length of an episode. I know if it goes on for more that 24 hours I should seek help.

Morzine
Morzine
in reply to BobD

Hi bob,

Am I right in thinking that the blood pressure ma nine is fine when you aren’t in afib. Cos my doc likes me to take mine the week before I go and she’s not sajd anything.

Sue

Staffsgirl
Staffsgirl
in reply to Morzine

My doctor asks me to measure mine at home, too. I wasn’t aware the electronic home one might be inaccurate.

BobD
BobDVolunteer
in reply to Morzine

should be yes. AF messes it up.

Mugster
Mugster
in reply to BobD

My blood pressure monitor worked fine for BP when I was in permanent AF, (cuff attached to electronic box). It was the HR reading that was messed up, flashing to tell me I had an irregular heart beat

Frightening times Wave.

It sounds like you are having a tough time of it at the moment.

I think med's can be trail and error - one mans poison and all that. An ablation works really well for many - I'm sure your ablation team will discuss it in detail when you see them in March. It helps many and could just tick all the boxes for you - frightening thought but there's nothing to it from I understand (easy for me to say I know;-).

Now your comment about having your heart racing for 12 hours and feeling breathless and nauseous plus dizzy ?

That's no fun.

I'm the biggest wuss out - honest I am. I think you ladies are far braver than us men. No doubt at all. I had that feeling for a few hours and the panic is immense - it really is. It's still with you for a week or so after - I worried in case it came back.

Check out breathing techniques online. The important thing is to try and relax. Very easy to say I know when it hits you.

For me I refuse to let it beat me and I'm not half as tough as a women. I'm abroad at the moment going on the 'most dangerous walk in the world' (Google it - you'll find out where I am).

For me your courage with what you are going though is a million times greater than mine. Keep up the good work Wave ;-) Maybe there will be tough times ahead but you'll deal with it.

Paul

Awww thankyou Paulbounce. Im a woose really....not brave but when your in it you just have to get on with it.... Feel better on the new meds. That cardiologist was an angel ringing me when she was on night shifts & shouldve been sleeping.

Oooh your in Utah? That looks crazily dangerous. Am in aww of you. Years ago I visited Utah but at ground level!! Enjoy have fun. We only live once!

I'm not THAT brave sweetheart. Third one down - Caminito del Rey ;-)

Good luck with the ablation if you need to go for it. I'm sure everything will work out.

Have a great day Paul

Hylda
Hylda
in reply to Paulbounce

Pass! 🤣

OMG! No way. Never would I go close enough to even see those paths. No. Nadda. Not brave at all. Get a weird tingling sensation in my bum just looking over a banister!!!!

Just looked! Why would anyone do that?😱😱😱

It's brilliant Hylda / Fancypants / 123abc.

It was the bees knees - that's why ;-)

Fear and afib V kicking afib to touch. My heart was pounding to start but then I found it so peaceful and awe inspiring. Just totally relaxing and at one with nature. I really enjoyed it as soon as I got started. I really mean that - it was a great experience. Once you get going nerves go out of the window.

Another one ticked off the bucket list.

Paul

Hi

Are you in permanent Afib or do you have episodes that come and go?

X

I have episodes but also a fairly constant higher heart rate than I should of. It has definately got worse over time.

Do you have your free T3 level checked when you have your thyroid bloods done? If your free T3 is too low it could actually cause your heart to race. Cardiologists are terrified of T3, but some of them realise that it's vital for the heart. I think you need to look into that. It's where I would start.

G'day waveylines,

Just to clarify ........... you say ......."using my electronic blood pressure/heart rate monitor any mire as it wont be accurate" ......... I am assuming you are using a bog standard digital blood pressure monitor, which gives a blood pressure reading AND a heart rate reading,i.e. 135/76/70, which is systolic/diastolic and heart rate.

If it is a bog standard/regular model it is correct that it won't pick up readings for AF - however - some manufacturers do produce a model which does detect AF. I am in Britain and our NICE organisation does advise on manufacturers/models which do provide an indicator that you are in AF. They also have a mechanism/software which enables you to download to hardcopy format. One such brand is Omron, my device is Microlife WatchBP home (A) ............ this will record your BP and heart rate when you are in AF. I guarantee it !

Kardia is a portable ECG (EKG) device whose purpose in life produces different printouts. Suggest you research this more 'cos I'm not sure exactly what device you are talking about. If you are in USA I'm even less sure - might be a play on words/phraseology, i.e. US English/UK English :-)

John

waveylines
waveylines
in reply to carneuny

Thanks am in the uk. I will look at the Omron one you mention. Yes I was using a bog standard one as it was bought sone years prior to my P-Afib diagnosis.

carneuny
carneuny
in reply to waveylines

Apologies waveylines ............ didn't make myself clear. Omron is one brand that markets the device but I don't know name or model no. you might just need to search the Omron website for a BP monitor that identifies and records, BP/HR and when you are in AF. It should say this in the specifications.

I have a different brand -------- recommended by NICE ....... manufactured by Microlife.

I also think that Beurer may also manufacture one to that records the three features but am not sure.

John

Hi Wavey,

Looks like you've had quite a tough time of it....

In my experience of Afib, meds are a bit trial and error although there are guidelines which are generally followed.

I think the cardio consultants have a huge historical knowledge of what works and where to go next, although they do seem to have their favourites.

I was first put on Bisoprolol which helped with my tachycardia attacks but didn't fix the Afib. Next it was Sotalol which acted like a medical cosh on me, although my Cardiologist was quite surprised at this.

I had cardioversion which worked fine but only for 2 months, then I had a long chat with the specialist Afib nurse, and she suggested Flecainide, confirmed it with the doc, and within 2 hours of first pill I was back in sinus rhythm where I have been for the last few years, apart from having the dosage increased recently as Afib was coming back :-(

So yes, it's a bit trial and error, the important thing is to give your cardios feedback otherwise they will think all is well, when it's not!

My next step when Flecainde stops working is ablation, although I approach it with trepidation. I don't know what the statistics are on ablation but the nice thing about this forum is that we get a cross section of experiences, both good and bad.

The good thing is there are many treatments now, when a few years ago there was little that could be done, it's just a case of finding the right one for you.

Good luck

Thankyou tunybgur. Am doing better on the calcium channel blocker, the Afib still kicks in but my heart rate has slowed somewhat. More importantly the new med is not affecting my thyroid hormone meds now which the reduced efficacy of those meds was also causing palpitations! Lol... So I think that the main reason why Im feeling better.

I did warn my cardiologist about the impact of beta blockers on my thyroid hormones meds pointing to my history & expressed concern about taking them. Unfortunately he didnt listen/believe me & told me this wouldnt happen this time. I tried to clarify this with my GP but was refused a phone conversation with one by the rotveiller receptionist so ended up talking to a private GP -who assured me I would be fine...... I do feel they should listen to their patients a tadge more!! Ah well am getting better now!

brit1
brit1
in reply to waveylines

for some dumb reason cardiologists seem blissfully unaware that beta blockers can affect thyroid meds. I have weaned myself off metoprolol and now will take only when I go into AF.

I find your doctors comments on the affect of beta blockers on thyroid hormone conversion very interesting. I have been on beta blockers for nearly two years now ( though a very low dose) and the last time I was tested my TSH had gone up so much it was out of range. I have been on thyroid meds for 20 years and this has never happened before. My doctor has said to increase my dose which I am doing slowly . I doubt he knows about this effect of beta blockers.

You might be interested in this link below about research on the effects of propanolol on thyroid hormones......the effects are accumalative.

ncbi.nlm.nih.gov/pubmed/168...

This is why my pharmacist was worried for me. He told me that though research on proponlol is conclusive on lowering T3 and scarily increasing rt3 which we definately dont want its highly likely that this is the case across all the beta blockers as they are of the same family. It just that they havent checked the others out! . I was initially on a low dose of cardivilol that increased in time, as heart rate went up etc.... my fatigue increased.... I kept blaming it on post cancer fatigue.

I dont know how doctors dont know about it, especially cardiologists as this fact was proven decades ago!!! Scary....

Thanks. This is worrying and gives me even more incentive to reduce and finally wean off Nebivolol. I do feel better on it than I did on Bisoprolol but I hate taking drugs and my afib attacks are infrequent. It's bad enough being on the anticoagulant for life!

Auriclaire am glad your attacks are infrequent but you may need an alternative in its place so you really need to talk to your GP/consultant? If you are only taking the beta blocker intermittantly it may not have the same effect long termly.

Am now doing well on the calcium channel blocker since starting it last Tuesday evening. I will admit that I feel angry that two cardiologists ignored my negative history of beta blockers interfering with my thyroid hormones and my worries that I expressed to them about taking a beta blocker again......& also that my GP surgery didnt query it or even bother to check me over after the incident. Ive been left to manage the backlash of suddenly stopping the beta blocker & the thyroid conversion issue as my body corrects itself which Ive had to self manage and make my own decisions over on my own. And then doctors wonder why patients do their own research?!!!! I feel I have no option but to be well informed for the sake of my own well being as sadly I cant rely on doctors or consultants to be well informed over my case.

After a few misdiagnoses and being floxed a few times I have little confidence in the medical profession. I am also very sensitive to drugs and being floxed has not helped this at all. I have weaned off Bisoprolol with the blessing of my cardiologist in the past. I 'm pretty sure a PIP approach would be better for me .

I check my pulse with a simple oxygen device that fits on your finger. It works just fine.

doodle68
doodle68
in reply to engvey00

Hi engvey :-) I have an oximeter but mine is not accurate for measuring heart rate when in AF . Oxygen levels are ok I think .

I read that this is not unusual. I have found only the Kardia gives an accurate HR reading when in AF.

engvey00
engvey00
in reply to doodle68

I have a Kardia which is 50 times harder to use than an oximeter. If I'm running a heartbeat of 209, I wouldn't think that a reading of 208 or 210 would be of any consequence. Just saying.

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