LAF at 32 - 'the strategy' combined with medication?

Hi all,

firstly I apologise if I'm very ignorant of past discussion threads and the like as I've only come across this site - but thank goodness I have as finally it seems I can have a discussion with people in the know...........

I was clinically diagnised with LAF and a slightly overactive thyroid in Jan 2013 aged 31 (I am told very young to get this?) My good wife forced me to see a GP as I was bordering complete exhaustion and the diagnosis followed immediately. Understanding the symptoms now I would say I prob had the condition for at least 2 yrs possibly more but just thought a new baby and work were the reasons for my further exhaustion -i won't add wife to the list for fear of swift retribution

I am a tunnel engineer and work 12-15 hr shifts quite regularly 6 days a week so thought tiredness came with the territory. However,I used to be quite a keen sports person (played football to a fairly decent level) and trained 4-6 times a week after work, but for the last few yrs just couldn't achieve the fitness levels I did previously (actually couldnt get anywehere near them thinking age was starting to tell. Crazily enough I would train even harder trying to replicate past fitness levels but to no avail - 10 mins on a treadmill at jogging pace would feel like a marathon...)

Since diagnosis, my thyroid has been controlled (to slightly underactive in the months feb-May) by carbimazole and I was cardioverted twice only to relapse into LAF in a matter of weeks. My flecainide dosages were upped and this seems to revert me to regular but only for a matter of days before I relapse into AF and the cycle of upping the flecainide dosage from 200mg/day to 300mg/day reverting to regular and then dropping back down to 200mg/daily and AF returning has continued without fail.

However, it is now taking 4-5days for the higher dosages of flecainide to prevail and the docs are only allowing me a maximum of 7 days on this higher dosage before they say I have to drop bak down to 200mg/day

I am currently taking the following medication religiously:

pradaxa dabigatran - 300mg daily (an alternative to warfarin I believe)
flecainide - 200mg daily unless I lapse into AF then I up the dosage to 300mg/day
bisoprolol - 1.25mg/day (was originally on 2.5mg per day but my heartbeat slowed to 32 bpm so this dosage was reduced)
carbimazole - 5mg daily

The endocrinologist cannot say for sure if my slightly overactive throid casued LAF but he is extremely confident since he has been controlling it that it is not responsible for the frequent relapses.

My cardiologist is now telling me ablation is my only real choice to move furward as the exhaution symptoms are truly debilitating (fortunately when I lapse back into AF the attack isnt that bad, I only get extrmeemly hot, tired and irritable and a good sleep seems to shake these off - the tiredness however remains)

I have tried to work out triggers and all I can list thus far are exercise, trying to solve work problems or when I get hot. Eating white breads/pasta make me feel very bloated but unsure if it is really associated.

Have improved my diet recently and whilst I feel better my relapses under medication haven't significantly improved in duration or intensity.

I have read 'the strategy' and was thinking about trying to add this supplementation to my daily routine but wondered if it was advisable whilst being on such medication? Has anyone else tried it?

I would appreciate any advice as am kind of at my whits end at the moment and fear ablation is my onl solution.

many thanks all, I really appreciate it as I do have a tendency to harp on.

Best regards,

Paul

Hi all

just to clarify, the cardiologist,electrophysician and endocrinologist don't think the slightly oveactive thyroid has anything to do with the AF but are having it controlled so as no blame can be attributed to it during treatment.

More recently though, in correspondence with the electro-physician, he stated 'that one cannot completely rule out the link between the two'.

I am a non-drinker, non-smoker (yes, very boring!)

Thanks again for your time.

Paul,

You may be interested in this excerpt from my first book:

Hyperthyroidism (Thyrotoxicosis)
A toxic level of thyroid hormones in the blood (thyrotoxicosis) has been clearly linked to an increased risk of atrial fibrillation. However, the number of LAF patients who actually have hyperthyroidism is probably less than 3%[7]. Thyrotoxicosis is usually caused by an overactive thyroid gland (hyperthyroidism). Clinical (overt) hyperthyroidism is fairly simple to diagnose as both T3 and T4 levels are highly elevated and TSH levels are extremely low. Hyperthyroidism also has distinct clinical features such as weakness, fatigue, weight loss, heat intolerance, irritability, palpitations, and tremulousness. It is usually treated by inactivating part of the thyroid gland either by surgery or through injection of radioactive iodine. Unfortunately, it is easy to “overshoot” in this treatment with the result being hypothyroidism and a life-long dependency on supplemental thyroid hormones (levothyroxine).

There is increasing evidence that not just overt hyperthyroidism, but also subclinical hyperthyroidism can result in atrial fibrillation[19-21]. Subclinical hyperthyroidism is diagnosed when T3 and T4 levels are normal, but the TSH level is low and there are no overt symptoms of hyperthyroidism. Recent research has found that both clinical and subclinical hyperthyroidism have a profound effect on the ANS by increasing sympathetic (adrenergic) activity and decreasing parasympathetic activity[18,21]. Austrian researchers have found that people with undiagnosed (subclinical) hyperthyroidism are 5 times more likely to develop atrial fibrillation than are people with normal thyroid hormone levels. The researchers studied 23,638 people and found that those with low values of serum thyrotropin (TSH) (less than 0.4 mU/L) but normal values of free triiodothyronine (T3) and free thyroxine (T4) had an incidence of atrial fibrillation of 12.7%. This compared to an incidence of 2.3% among people with normal TSH levels and an incidence of 13.8% in those with diagnosed hyperthyroidism[19].

It is clear that both clinical and subclinical hyperthyroidism are important risk factors for atrial fibrillation and that all afibbers need to have their thyroid function tested in order to rule out these disorders as a precipitating cause. It is important to keep in mind that even normal levels of thyroid hormones (T3 and T4) may be toxic to some people so a very careful (“sensitive”) analysis of TSH level is a must.

It is also a good idea to check the basal temperature. In our latest LAF survey 3 out of 22 respondents reported a high morning temperature (98.6 to 100 degrees F), which may indicate an overactive thyroid gland. The 3 high-temperature afibbers had considerably more and longer afib episodes than did afibbers with normal basal temperatures.

Hans

Thank-you so much for the insight Hans.

I think my next move will be to get your book!

The endocrinologist seems to think removal of the thyroid would be extreme given the readings from my blood test - His plan is to control the thryroid whilst Cadiologists get the afib cured so to speak and then remove my thyroid medication to see if there is any adverse effect. if so then he would then agree to thyroid removal.

i fear it may be many months down the line before I get to a solution.........I was trying to stay away from ablation but think the sooner I get it done the quicker I can progress the detrimental/non-detrimental theory effect of the thyroid on my afib.

I have read the supplement exert by Jackie Burgess ('the strategy') and would like to follow the magnesium/potassium/taurine/co-10/ribose/vit D etc supplementation along with a low GI wheat/gluten free diet for a little while before I commit to the ablation. Do you think it would be ok to take such supplements whilst taking the blood thinners/arrhythmia/beta blocker/thyroid medication or is such a combination the norm?

I hope these questions don't seem to basic and am very much appreciative of your or anyone elses input.

Best regards,

Paul

Paul,

I'm no thyroid expert, but 12 years ago I had a cat with hyperthyroidism. The treatment was radioactive iodine. As I recall, there was a small tumor on the thyroid. The iodine went preferentially to the tumor and killed it. My recollection is this worked pretty well with the cat (who was 19 at the time). Other than he was isolated for a bit, it was not hard on him.

Is the afib the reason for your exhaustion? Generally this is only true if the ventricular pulse rate in afib is very high (I'll say >170 BPM, though others may correct - this is not what happens to me).

Bisoprolol is a beta blocker. Could it be part of the exhaustion issue (or does the exhaustion predate the script?). Also, if your afib has a vagal trigger <[www.afibbers.org] , the beta blocker could be part of the problem as it slows you down.

As to diet, eating only "real food" (basics - meat, veggies - things you cook from scratch) may be a good place to start, then staying away from grains & dairy to see if they cause issues.

As far as the strategy goes, it has helped some of us (like me, I use my version of it). No guarantees, but certainly worth trying.

If you do go for an ablation, the advice here is to choose the best, most experienced ablationist you can find. What country are you located in?

Best regards,

George

Hello George,

thanks for the post.

Here goes my understandings/misconceptions!

The docs are unsure whether the (slightly) overactive thyroid triggered the AF in the first instance or whether I developed the AF first and this has caused my thyroid to go slightly high. Whatever came first they seem to be pretty sure that the thyroid def isnt causing the constant relapses into AF as the thyroid is now controlled (slightly underactive).

Is there a possibly that because I had been in permnent AF for 2yrs plus may it be that my heart is struggling to remember its NSR and this is the reason for the constant relapses every 4-7days?

My symptoms were always extreme exhaustion, overcome by heat, irritability and tremors of the hand prior to being diagnosed and before taking any medication.

I have always had a slow pulse due to playing sports - aywhere between 40-60bpm. The medication has kept this rate fairly constat unless I increase the beta blocker to 2.5mg/day. This brings my heart rate down to 30bpm and whilst I don't feel anymore tired than I would with I am slightly dizzy. When I revert to AF I don't seem to have an atack that debilitates me due to extreme racing of the heart (think I am lucky in this instance as I believe many unfortunately do). My heart does race but settles after a couple of hours to leave me with an irregular pulse and then the tiredness sets in..........

Having improved my diet to a low GI type has slighlty helped energy levels but when I revert to AF the exhaustion sets in and if I do any exercise then my muscles ache for days.

I have twice reverted to AF whilst going for a brisk walk or a light jog. At other times it just occurs whilst doing menial tasks at home or when I get stressed caught up at work. The episodes always occur during the day Whilst I never revert to NSR until after a nights sleep having taken 300mg of flecainide the previous day (now taking 4-5days worth of 300mg to achieve this). Is this a vagal/adrengenic/mixed AF type?

I live in the UK (London) and am currenlty being looked after by Dr Murgatroyd in the London Bridge Hospital.

Sorry if I have repeated a lot.

Best wishes,

Paul

Hello Paul... I have several observations for you which I'll send along shortly, but I wanted to comment initially that I have a considerable amount of experience dealing with thyroid issues... mine were mainly hypo... but once I began working on the nutritional aspect of thyroid support along with Armour thyroid hormones, I became very close to 'hyper'...and noticed that it did affect my heart and afib activity. When I had my ablation 10 years ago, I asked my EP, Andrea Natale, about risks for overcorrecting and becoming 'hyper' and he said, yes, definitely. It's my experience that most of the endocrinologists I've consulted are not aware of the close connection between arrhythmia and thyroid dysfunction...either hypo or hyper.

Be aware that thyroid issues often have origins in adrenal function ...as directed from the hypothalamic-pituitary-adrenal axis (HPAA). The hormones produced there influence everything downstream including the thyroid gland functioning. So, your stress level speaks to adrenal fatigue issues which need to be addressed first before the thyroid will respond as it should.

I'm pressed for time, so I'll add more later if you are interested.

Best to you,
Jackie

Hey Jackie,

I would be abs delighted to receive any further info or observations you have.

I look forward to hearing from you. Hope you have a nice day.

Best wishes,

Paul.

Paul,

Sounds adrenergic to me. Certainly not pure vagal. Sometimes betablockers can keep an adrenergic person in NSR, but it sounds like your naturally low heart rate may preclude using a high enough dose to do this.

If you detrained, would your resting heart rate come up significantly?

If you were out of rhythm for 2 years, it may be difficult to stay in NSR for any length of time without an ablation (I would call this persistent, since you don't convert without electrical or chemical cardioversion, but not permanent as you can convert). There is significant remodeling that happens during afib (both electrical and physical) that makes it more likely to continue and more difficult to revert to NSR.

The people that have significant ablation experience will likely tell you that your 2 years in afib will make you a more "complex" case for ablation. This ups the ante in terms of which ablation doctors can best treat you. We have a fair contingent posting from the UK and I'll let them weigh in on which UK docs they think are best suited for your case. If you are willing/able to pay for medical tourism, one of the best ablation teams in the world is in Bordeaux France (Drs. Jais and Hassaguerre).

Regards,

George

Paul - One tidbit I will through out at you is that you may not have a super slow heart rate strictly because of your conditioning. It is possible you have a condition called Sinus Bradycardia. I had the same condition before my ablation, with a resting heart rate in the low 40's, and as low as 35, and a cardiologist also prescribed Bisoprol. I researched it and found it can have the side effect of lowering your heart rate. I later discussed the drug with an Electropysiologist and he said I was definitely not a candidate for this type of drug.

An interesting note is that the doctor who performed my ablation said that "ablations favour those with Sinus Bradycardia". He went on to say that many people have a higher heart rate following an ablation. Mine now rests around 60, instead of in the low 40's, and I feel much more comfortable with it.

There is much miss-information out there about drugs and proceedures, and this forum is a superb place to sort through it all.
Ron

Ron:

My understanding is that Sinus Bradycardia doesn't just go away, years ago I was put on a beta blocker (by an M.D.) for my AF, the beta blocker made me hypo, (I was on thyroid meds) when going back into NSR from an episode of AF my heart rate would go way down into a flat line for a few seconds. I was told I had Bradycardia and a pacer was inserted. The EP also said that it is possible that the beta blocker caused my bradycardia. Bisoprol is a beta blocker----my pacer is set at the low end at 50, my heart rate is usually in the 60s, so I very seldom use my pacer, but it is there in case.

Liz

George: Thank-you very much for the advice and explanation/referencing of terms relating to my symptoms. I have never really had any of that explained to me............

Most recently I went into AF on Sunday afternoon and upped my flecainide dosages to 300mg/day. I noticed my heart rate slowing yday evening (though still irregular) and I went for a long walk. as I upped the pace of my walk my heart beat increased ferociously to the point I was forced to sit down as I couldn't seem to get any air quick enough (the first time I have been affected this dramatically), however, when I regained my composure through breathing techniques my heart slowed again, albeit still irregularly. I took my last flecainide tablet before bed and woke up in the night to find that I felt alot calmer than previously during the day (this seems to be my sign for knowing I have reverted to NSR) and when I felt my pulse I was indeed in NSR. So the cyclic process of in and out of AF continues while yo-yo-ing the flecainide dosage to suit but this time AF only lasted 30hrs or so as opposed to the 4-5days it had been taking. This is probably giving me a false hope that my heart can revert and maybe retain NSR but my gut feeling is you are right - 2yrs in persistent AF will make it incredibly hard for my heart to remain in NSR of its own accord.

The nurses at London Bridge have told me I can stay on 300mg of flecainide for another couple of days whilst in NSR to see if that helps any.

On a separate note, my doc said that when he did the 24hr monitoring of my heart that it stopped during the night on occasions but that it wasn't a concern as I was seemingly a fit and otherwise healthy individual. maybe if this is the case then my heart resets itself at this point???

Ron: That is very interesting. I suppose now that I am in and out of AF it would be impossible to determine whether I had Sinus Bradycardia? How actually is it determined? Is it diagnosed by examining heart wave patterns? I have had a scan of my heart and was told there was no abnormality? The docs reasoning to why I have AF is that I am just unlucky? That is the part I find hard to get my head around. (I was unlucky in my Maths GCSE's because I didn't revise certain sections of the syllabus that came up!). There must be an underlying reason or a genetic disorder?. Please correct me if I'm wrong but does an ablation act like a dam wall to stop rogue electrical signals passing through the chamber of the heart so that NSR remains? If so, the underlying reasoning for why we are getting the rogue signals is not corrected so that must put us at risk for AF's return? I suppose that depends on how secure the dam wall is???

Liz: Did you have an overactive thyroid to begin with and the beta blocker made it go HYPO? Upon discovering I had an overactive thyroid I was put on 20mg of carbimazole/day. Over the next month my thyroid went to being HYPO (albeit slightly). My dosage was changed to 5mg/day and I remain slightly HYPO and the endocrinologist is very confident that he has the levels controlled for the moment.The bit that Hans advised upon states that if you are HYPER or HYPO then AF is a distinct possiblity. Therefore I assume my previous state (HYPER) left me wide open for AF and my current state (HYPO) also leaves me susceptible - which is why I'm still battling the AF relapses?

I just get the feeling that there are so many variables which is why ablation is the preferred route.

Please forgive me for asking but did you have your thryroid removed Liz? If so, did it benefit your AF treatment?

Thank-you to all for bearing with me and giving me the good grace of your time.

Best wishes,

Paul

Paul,

I would pursue the "Strategy," especially as it relates to magnesium, potassium & taurine. Some of us have found that taking these supplements help flecainide work better. I only take flec on-demand to convert myself (or pill-in-pocket "PIP" ), but seem to have a quicker conversion if I load up with the electrolytes as I take the flec. I also take them continually as they are the core of my afib remission strategy.

Sinus Bradycardia is technically defined as a rate less than 60 BPM. Woo hoo - many of us, including me, live fine lives in that realm. As I'm sure you are aware, athletes have low resting heart rates. This is normally thought of as good. It is, except when it is not! If you are getting long pauses, it is not a good thing. Sinus Bradycardia can also set you up for vagal afib. Many of us got here (afib) by way of chronic fitness. My opinion is that chronic fitness combined with some genetic predisposition is the path of many lone afibbers. In some cases, detraining, leading to an increased resting heart rate can help (I'm not sure in your case, with appearances of adrenergic triggers in your case). What is that predisposition for those chronically fit? Good question, but it could be rogue "p" or pacing cells in the pulmonary veins. Afib sets up reentrant circuits in the atria. Ablation, in simple terms, puts in scar lines to break up these circuits. Also, in some cases, they look for the "source" and ablate or kill the source.

Someone like Shannon can give a much better explanation of ablation, but the above is the simple one.

Good luck.

George



Edited 3 time(s). Last edit at 10/22/2013 05:13PM by GeorgeN.

Paul - your comment about the dam wall seems to be very accurate. I have been successfully ablated, but I still feel the beast banging hard against the door at times wanting back in. I am doing everything I can to make my substrate as solid as possible, and while this is happening, I am gaining a healthy body and mind like never before.

It has taken a hard line resolve that "I will have my health back at any cost".

What I believe is important is to be a seeker, and to understand as deeply as possible what has gone wrong in your system to bring you to this point. Yes you are unlucky, or maybe you are lucky that your dysfunction expressed itself as afib which can be treated almost to the point of curing it, as opposed to some more drastic illness.

One needs to be suspect of any "magic bullet" that promises to cure you by popping a pill three times a day and washing it down with water. Not to say that the supplements or even medicine cannot be helpful at times, but just that anything that has been driven by corporate profit motive in the pharmaceutical world, food industry or investment industry, must be accepted with caution bordering on scepticism.

In regards to the Bradycardia, it was always noted on my EKG. I'm not sure that it is a big issue other than finding out I was not this iron athlete I thought! Also, it seemed that I was susceptible to tripping over into afib when my heart was at its lowest rate.
Ron

Paul:

I had Graves disease, which is hyper thyroid, at the time I was diagnosed, in 1992 I didn't have a computer to check on what the doctors recommend. The doctors used RAI (radioactive iodine) which goes to the thyroid gland and nukes it, so I have very little thyroid gland left. I was fine for a number of years, no AF, until I was overmedicated on my thyroid meds, then at that time I went into AF, even after getting my thyroid where the numbers should be, I started getting AF once in a great while, as the years went on I got AF more often. I found this site and started taking magnesium which I found I was low in, my potassium was fine. Since I always got an episode of AF at night while asleep or sometimes just resting watching T.V.... My doctor advised me to take a tab. of propafenone (150mg.) at night before bed, that and the magnesium has helped me a lot, I still get AF once in a while but it is mild and I go back into NSR in a few hours. I have always eaten pretty good, I raise my fruits and veggies, don't eat junk food.

As to my bradycardia, at that time (before this site) my doctor has prescribed a beta blocker, it made me feel lousy, tried, I also learned that the beta blocker interferes with the uptake of the thyroid hormone, so I became hypo as well, I got an episode of AF and when going back into NSR my heart rate went way down to flat line for a few seconds, this happened another time and was caught at the doctors office, I was diagnosed as have sinus bradycardia and a pacer was inserted. I am not really sure that I really need the pacer as I am told I use it only about 3%/year, but, it does give me some sense of security as I don't want to flat line even for a few seconds.

As to your question about either hypo or hyper causing AF, yes indeed it can. The only reason that I can see why a beta blocker is prescribed to you is to protect your heart, if you have too much thyroid hormone it will cause your heart to work harder and beat faster, the beta blocker stops that. I don't know what is in the pipeline for a thyroid that is hyper, they used to give a drug that was an anti thyroid drug that sometimes helped a hyper thyroid, you had to get tested every so often as it can affect the liver. If you are becoming hypo, you don't have graves disease, you probably have Hashimotos which will change, sometimes you will be hyper, sometimes hypo, you certainly don't want to get your thyroid operated on or nuked until you find out an exact diagnoses, if you are hypo, iodine (Iodoral or Lugols can help the thyroid.

In closing, I will say that having too much thyroid hormone caused my AF, the heart seems to remember and goes back into AF more easily, so make sure your thyroid numbers are correct, I have found that very few doctors are good with thyroid problems, there are some good sites, good books on the thyroid, I have a doctor, dr. David Brownstein who has written a book on the thyroid [www.drbrownstein.com]

Liz



Edited 1 time(s). Last edit at 10/22/2013 02:46PM by Elizabeth H..

George: thanks for all your help, I'm definitely going to implement the 'strategy' and have a 'pill in the pocket' to see where that leads. I had some adrenal stress tests done recently so I wonder if there will be anything obvious showing when the results come through? When you are in NSR can you feel a tightening at times in your pectorial muscle area that feels deeper than the actual pectorial muscle itself? Maybe tightening is the wrong word as possibly I'm just more aware of what is going on in that area........

Ron: am really glad things seem to be working out for you (it strikes me that a lot of hard work and soul searching goes into this for a resolution......this forum really is a god send to share experiences). Even with the ablation Ron, can you feel the heart and 'dam wall' struggling to keep the rogue signals at bay and penetrating through the chambers? If so, do you get any symptoms or side afects from this? Are they similar to how you feel when in AF? PS, I used to be moderately impressed by my own low bpm in the past! Oh the irony!

Liz: thank-you so much for sharing that with me (and all of us who are reading). It is very kind of you to take an interest and offer aid. I just can't see a resolution to the thyroid issue for me though............if I can't find a solution using medication and supplementation then I guess an ablation will be on the cards. However, if the ablation works and then I am slowly taken off the thyroid meds, whatever the state of my thyroid how will I know that it is my thyroid causing the return of AF and not just my heart not remembering to keep NSR? I suppose at that stage you have to take a leap of faith and just commit to eliminating one of the variables?

Thanks again to all those who have posted, I really am indebted to you all.

Best wishes,

Paul

Hi Paul - what I feel sometimes is sort of hard to put words to. When Afib would come on prior to the ablation I could feel the unsettled feeling. The feeling that is most defined to me, but would likely not show up on an EKG, is a heavy heart beat. I can tell when my potassium is low as I can feel this happening, and will test it with my Cardy Meter to confirm. Other times I have eaten something that bothered me and sent me into the night time stomach distress. This would always previously cause afib. Now when it occasionally happens I do manage to stay in NSR, but it feels like I could tip over the edge at any moment.
Ron

Hey Ron,

I hope 'the beast banging on the door' stays firmly locked away for you.

The cardy meter sounds like a very useful tool indeed. Is there any suitable home magnesium test kit you would recommend or is that a doc visit?

Have been reading a lot about gut/adrenal fatigue issues (by Jackie Burgess) and I think there may be something in that with my thryroid and AF. I seem to be suffering on all 4 of these fronts but god only knows what I got first and started the chain reaction!

Will start trying to tackle each and see what effect that has before I commit to an ablation.

Does anyone out there have any UK recommendations for docs carying out ablation proceedures or who are more partial to discussions typical to this forum?

Thanks for your help Ron.

Best Regards

Paul

Paul,

Here is a search on UK ablation for this site: <[www.afibbers.org]

George

Paul the only good test I know of for Mg is an Exatest. The test done through your regular doctor for Mg is a serum test, and with only about 1% of your bodies Mg carried in your blood, it is not an accurate test. Serum Potassium tests are accurate in the moment the blood is drawn, but my levels fluctuate so much through the day that even my doctor did not see what was going on, so the Cardy Meter has been a good tool for me.
Ron

Hello George and Ron,

Thanks for your help guys, I'm so much further forward and not as totally lost as I was 2-3days ago.

The team at Bordeaux and R.Schilling/S.Ernst (UK) have fantastic ablation reviews.

I'm goIng to get on board 'the strategy' and Jackie's gut/adrenal paper advice and see where that takes me. Will let you know how it goes. (I'll have to just cut the oranges for the football team in the immediate future I think!)

I hope all is well with you both and continues as such.

Kindest Regards,

Paul