PAF to Permanent?

[nikonBlue]

Morning all!

This might seem a daft question but how would I know if my AF was becoming permanent! I ask simply because I'm having almost daily episodes lasting hours and it's wiping me out. That bag of worms is doing it's thing as I type!

Or could it be that after almost 5 years the Flecainide I take (150x2 daily), is no longer working?

I'm waiting on an appointment to see my cardiologist as my gp has referred me twice in the last 3/4 months but am still waiting

I know none of us are medics but advice from those who know will be very welcome!

stay well everyone,

Blue x

[jeanjeannie50]

Hi Blue

That's a hefty dose you're taking.

I discovered that 2 x 100mg Flecainide was giving me atrial flutter, as soon as I stopped taking it my pulse went back to normal sinus rhythm. Perhaps you need to try a different pill, some members here get on well with propafanone (not sure of the spelling).

Jean

[BobD Volunteer]

Firstly as you I think guess ,flecainide doesn't lose effectiveness but your AF progresses. Secondly your AF will only be termed permanent when both you and your doctor agree that further treatment is no longer sensible and you adopt a rate control only strategy (with anticoagulation where appropriate of course.)

I suspect that you may need to rattle some cages or think about a private electrophysiologist appointment if things do not change soon appointment wise.

[Hidden]

As Jean says you are taking the maximum permitted daily dose and it’s clearly becoming less effective. I hope you are also taking either a betablocker or calcium channel as this is a must with regular daily doses of Flecainide. It’s commonly known that PAF often becomes permanent over time but we often hear that folk find it easier to cope with after the transition. Hopefully you can be offered an alternative which will be more effective but maybe now is the time to consider an ablation. If it’s possible, perhaps a private consultation might help if you are having a difficult time....

[nikonBlue]

Thanks guys. I also take perindopril and bisoprolol )that's not the correct spelling, sorry!) amongst 'other' meds including exemastane (breast cancer in 2015) and having read the report on men/women having different treatments during ablation, I wonder if there's a connection as the exemastane is a preventative (hopefully). Just a thought. I was recently taken of levothyroxine which my gp said I didn't need and that may be contributing to the dancing going on in my chest!! Yes, will push for an appointment. Nobody has ever said about seeing a electrophysiologist but it makes me wonder. Might ask the doc when I see her.

stay well all,

Blue x

[baba]

Who prescribed levothyroxine for you? I’m sure there was a good reason and on what basis does the GP think you don’t now need it?

[nikonBlue in reply to baba]

Hi,

I've been on that for many years now as I was told I had an underactive thyroid. My gp I now have suggested that this medication can cause palpitations so after doing blood test she said I don't need to be on the levothyroxine.

Blue

[bantam12 in reply to nikonBlue]

If you were diagnosed with hypothyroidism and have taken Levo for many years you can't just stop taking it, there is little chance your thyroid will spring back to life and provide you with the hormones you need. You need to get your thyroid levels checked asap T3, T4 and TSH and if they are not optimal you will be heading into trouble.

[baba in reply to nikonBlue]

Certainly an underactive or overactive thyroid can cause palpitations. If it has been underactive "for years" it is unlikely to have healed itself.

For good thyroid information see thyroid uk forum on HealthUnlocked.

healthunlocked.com/thyroiduk

[faridaro in reply to nikonBlue]

Agree with bantam - you need to ask for entire thyroid panel blood test to determine status of your thyroid function after being on medication for many years.

[Auriculaire in reply to nikonBlue]

If that is because your bloods are within range it is because the replacement thyroid hormone is working! I would insist on seeing the blood test results. If the TSH is too low or the free Ts too high the normal course is to adjust the dosage not stop it altogether!

[nikonBlue in reply to Auriculaire]

My gp said that it was such a small dose I've always been on, that I must not actually need it. I was taking 25mg every day over the last at least 20 years! Just adds more concern to the whole health issues but I will be asking about this.

Stay well

Blue

[Auriculaire in reply to nikonBlue]

Then that is very unlikely to be causing palpitations. Your GP obviously knows nothing about about thyroid problems. Dosing is done by blood test results ( although this convention is often criticised as taking too little notice of actual signs and symptoms of thyroid disorders and many doctors are woefully ignorant of them). It is more likely that you have been underdosed . You must get the actual test results and if you do not know how to read them post them here or on a thyroid help site.

[nikonBlue]

Thanks guys for all this input. I will ask for further blood test to be done (oh, no....more needles)

stay well everyone,

Blue x

[Hidden]

You might try the following to see if you can stop A-fib yourself:

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After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt??

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

[nikonBlue in reply to Hidden]

hello,

thank you for the reply and I'll take that on board. I drink gallons of water 24/7 as b.p. medication and the cancer meds I take all have 'flushes' as a side affect so I'm having 'power surges' at a helluva rate of noughts on a daily basis! It's rubbish. Then recently whilst having a power surge, it seems to be that I then start the AF fluttering and I sometimes ask myself which one starts the other? I don't add sugar to anything but appreciate it's what's IN the food though I admit I do add salt but not as much as I used to!

I'll be seeing my gp next week so will be asking her about all this with the thyroid situation. Strangely enough if I eat something with lots of sugar I have actually thought that it's the cause of having an episode so I'm already monitoring that in some ways. Thankfully I have more of a savoury taste than a sweet taste! Thanks again.

stay well,

Blue