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Not sure what type of LAF I have

Posted by Madeline 
Not sure what type of LAF I have
November 30, 2018 07:38PM
I am reading LAF Towards a Cure by Hans, & I am still confused as to whether I have vagal, mixed, or adrenergic AF. I do believe it is lone AF bec I had been told my valves & pumps were all normal. I believe my AF was caused by too much thyroid med for too long. My thyroid was surgically removed totally 13 yr ago (Hashimoto’s Thyroiditis w/suspected CA) so this is not thyrotoxicosos, but rather too much replacement with advancing age. AFdiagnosed last yr & EP said I have normal heart muscle function. So I guess that confirms I do have LAF (which Term I only discovered after finding this site). The cardiologist put me on metoprolol right away, but I had side effects & my endo changed it to carvedilol (which I researched & found it was not a cardioselective beta blocker,which gave me concern, but I did not get side effects from it, so I stayed on it). Later on this site I learned about the different types of AF& titrated myself off the BB slowly in case I had vagal.

I am still adjusting my thyroid mix of natural & synthetic replacement & still have gotten what I think are AF episodes about once every 4-5 wk. I would characterize them as moderate, not lasting too long, maybe 4 hr & self terminating. They happen mostly late aftn to evening, many times around dinner & red wine, sometimes bec too much stimulation or perhaps from hypoglycemia if I have not eaten in too long a time. Being 69 & also being without a thyroid, digestion is not great & I take betaine HCL digestive aids with meals. So I began to think my AF was vagal even tho I am female & 69. I am very physically fit, trim & strong. I bike, do yoga, Pilates & take almost daily 30-45 min walks. I have read what the traits are for vagal afib but given my description above I’m not totally sure still. What do you think?

I should also mention that for a long time I have had a benign essential tremor and between lowering my thyroid med and being on the beta blocker earlier, I felt a lot steadier in my hands. I am not sure if I should restart a beta blocker or not. I do not have high BP, so the BB did give me side effect of double digit BPs, tho I was not too fatigued by it. I also read in the book that just be careful not to take the beta blocker in the evening if you think you have vagal AF, so that led me to believe maybe it was OK to take it in the morning only if I restarted. Any thoughts on that?

I have declined to take a blood thinner, even aspirin. I have heard aspirin does very little in the way of stroke prevention, & I could not take it anyway since I take betaine HCL & the two taken together are contraindicated bec of the acid.

Thanks for your thoughts.. I know my post may be long, but I feel it is necessary to be specific in my description of what exists in order to receive helpful feedback.

Madeline
Re: Not sure what type of LAF I have
November 30, 2018 08:39PM
Quote
Madeline
I have declined to take a blood thinner, even aspirin.

I hope you understand the risk you've chosen and I hope you have a realistic understanding of what the consequences of stroke can be. I mean really, not from TV, and not from your uncle who just ended up with a droopy eyelid. I'm talking about the people confined to nursing homes for life who spend their days in a wheelchair, drooling onto a bib, unable to speak, not recognizing their family, wearing diapers, and being spoon fed soft diets. I'm not sure why you declined an anticoagulant but it's hard to imagine a worse outcome from taking one than not. I hope your gamble pays off.

I didn't address the actual question you asked because honestly I don't think it's particularly important which type of afib one has. Afib is afib. It sucks either way.
Re: Not sure what type of LAF I have
November 30, 2018 08:55PM
Quote
Carey

I have declined to take a blood thinner, even aspirin.

I hope you understand the risk you've chosen and I hope you have a realistic understanding of what the consequences of stroke can be. I mean really, not from TV, and not from your uncle who just ended up with a droopy eyelid. I'm talking about the people confined to nursing homes for life who spend their days in a wheelchair, drooling onto a bib, unable to speak, not recognizing their family, wearing diapers, and being spoon fed soft diets. I'm not sure why you declined an anticoagulant but it's hard to imagine a worse outcome from taking one than not. I hope your gamble pays off.

I didn't address the actual question you asked because honestly I don't think it's particularly important which type of afib one has. Afib is afib. It sucks either way.

I agree with Carey. To not be on anticoagulants at this stage is akin to playing Russian roulette. The type/cause of afib is irrelevant at this juncture.
Re: Not sure what type of LAF I have
November 30, 2018 09:13PM
Madeline:

Could you tell me what your thyroid numbers are: Your TSH, free T4, free T3? I don't think you are getting AF because you have been on a thyroid med. for a long time, I have had my thyroid nuked because of graves disease, I was hyper. I have been on a thyroid med.since 1993, I can get an episode of AF because my thyroid is over medicated or under. I am Vagal as my episodes occur late at night or the early morning hours,. If you need a beta blocker for your tremors and it doesn't bother you then continue it, just take the smallest mg. that will help you. I do take one tab. of Propafenone at night before bed, it does have a small amount of beta blocker in it.

I got AF in 1998 because I was on too much thyroid med, too much thyroid hormone can affect your heart. I have had episodes off and on since that time, I convert on my own, I do take a baby aspirin, probably not the best but I cannot take anticoagulants. For what its worth I have a Holistic doctor and he said I wasn't in AF long enough to stroke. Why don't you look into some natural ways like Natto or Boluoke for a blood thinner?

Liz
Re: Not sure what type of LAF I have
December 01, 2018 11:37AM
Hello, Thank you for replies. Elizabeth I will address your questions, but first I wonder if any of you has read Hans' book? Because he definitely thinks knowing what type of afib you have is ultra important. Because knowing whether its origin is vagal or adrenergic or mixed determines the proper treatment, and in fact, the one-for-all afib treatment can be highly detrimental. He has many comments taken from his surveys in the book from where no drugs at all fare better than taking some. My episodes aren't severe feeling to me & don't last long & definitely have gotten better when I have the right thyroid replacement, so I am not so concerned at this juncture anyway about taking beta blockers or antiarrhythmics & such as much as I am about stroke prevention.

I am most conflicted about stroke prevention of course. Taking the blood thinners have their own dangers. I believe the new ones don't allow surgeons to get a pro time (PT/INR) before surgery to know a person's clotting factor before they operate & I don't think they have anything to reverse the blood thinning in an emergency, such as a car accident. There is also internal bleeding. There have been deaths reported due to the blood thinners.

I have also been informed by EPs that aspirin may do nothing to prevent stroke, and it too has negatives to taking it. I am not jumping into anything that I might not need yet & cannot easily reverse. If I were not needing the betaine HCL for stomach acid, I would hesitate less on the aspirin. I am studying/reading this very detailed & informative book at the moment. There is so much to know.

I am taking a high amount of fish oil & a naturopath also recommended ginkgo biloba 240 mg a day for blood thinning & also strengthening the walls of the arteries & capillaries.

Elizabeth, I don't want to get into the thyroid stuff right now because I understand too much or too little can cause afib.

You are lucky you know for sure you are vagal. I thought I was too, but at this point I am thinking more possibly mixed. Do you ever do the physical activity right before an impending episode to stop it? I mistakenly thought the activity during an episode could stop it, so like I read somewhere I ran up & down the stairs a few times to see if it would stop it & it made it a bit worse, so I stopped that immediately. I was trying the vagal cure, but I think you can only do that BEFORE an episode as you feel it coming on. If I were you, I would want to read this book of Hans as well. It gives so much specific info for all the types & just every nuance of afib episodes. What you said about not being in afib long enough to stroke is the kind of thing I have read in the book as well. Severity, duration, etc. makes a difference.

I underline books when I read them & I have tons of stuff underlined! If you have the book, you might want to look at p. 33 & p. 45 about stroke prevention. Also p. 85 about propafenone & p. 87 re conclusions re drugs. And, I only cite these though there are multiple references about everything repetitively throughout the book.

I believe if Hans is still alive, he must be about 85, according to a date & age he referenced about his afib in the book. I wonder how he has done over the years. This edition was revised by him in 2015.

Oh, PS: I don't know for sure about having afib episodes bec I don't have a program to determine that. I do use a BP monitor at home that will show an irregular sign if the pulse is uneven, but they do state it is not an afib detector, but to see your dr if it occurs several times a week. I also use an app called Cardiio on my phone that will give a pulse & a waveform, but they also state these are not true EKG forms & not yet a true afib indicator app. I am sure it will be coming eventually, the afib apps, ie. I guess there are some out there now, but perhaps expensive or cumbersome to use, not sure. Seems at some point I read about that.

Madeline
Re: Not sure what type of LAF I have
December 01, 2018 12:48PM
Re: Not sure what type of LAF I have
December 01, 2018 07:22PM
Quote
Madeline
I am most conflicted about stroke prevention of course. Taking the blood thinners have their own dangers. I believe the new ones don't allow surgeons to get a pro time (PT/INR) before surgery to know a person's clotting factor before they operate & I don't think they have anything to reverse the blood thinning in an emergency, such as a car accident. There is also internal bleeding. There have been deaths reported due to the blood thinners.

Strokes cause far more deaths than bleeds from anticoagulants. There are reversal agents that reverse the effects of the newer anticoagulants. Surgeons are accustomed to dealing with patients on anticoagulants and have no problem doing so. Your risk of stroke from not taking an anticoagulant is far higher than your risk of suffering any type of harm from taking them. I think you need to reevaluate your choices. Really. You're trading a low risk for a high risk.
Joe
Re: Not sure what type of LAF I have
December 01, 2018 09:15PM
FWIW, i take 5mg of Eliquis 2x/day. Haven't noticed any excessive bleeding when i manage to cut myself - admittedly minor cuts. No other side effects noticed either.
I'm booked in for a bi-lateral laparoscopic inguinal hernia operation. Was told to stop Eliquis 3 days prior.
Re: Not sure what type of LAF I have
December 02, 2018 07:21AM
Thank you for your replies, continuing to take it all in.
Re: Not sure what type of LAF I have
December 02, 2018 09:38AM
It looks like to me that what is needed here is a way for you to know when your in AFIB, and for how long. Knowing how much you are in AFIB, will help estimate Stroke Risk and the need for Blood Thinners.

People use many ways to determine this:

Wearing a "holter monitor" from your Dr. records AFIB or PAC's.
Pulse check with using your Finger.
Pulse Oximeter shows Pulse rate variation an strong indicator of AFIB.
Mobile Heart devices like the Kardia Mobile [www.alivecor.com]
Palpitation check by laying on left side where Heart palpitation are more noticeble.

Blood Pressure machines are not accurate for detecting AFIB, they will show "Irregular HR" just from having PAC's, and sometimes they miss evenly spaced AFIB.
Re: Not sure what type of LAF I have
December 02, 2018 03:05PM
Thanks anti-fib! I see the price has come down & I guess it is time for me to buy the Kardia Alive-Cor thing. I saw where the pulse oximeters ranged from $16-$80 at first glance & I am no good myself at detecting afib by pulse, so I guess I need the real thing. I know the sensations, but nothing like really having solid confirmation for me & to show the doctor.

I did wear a Holter monitor for a little over a month last January, but I had been taking too much thyroid medicine for a while & it would be good to see where I am now with different thyroid treatment.

I appreciate your detailed tips.
Re: Not sure what type of LAF I have
December 02, 2018 06:22PM
Liz,

What type of thyroid med do you take? Before my dx of AFib, I was on all natural dessicated thyroid (NDT - if you have any experience with it, it is pretty complicated). After AFib dx, I had to switch to synthetic at first, but later I wanted to add back some NDT, so the synthetic was lowered & I am still trying to find the right mix. It is tricky. But the NDT does so much more than just synthetic, esp when you have no thyroid anymore at all. All my thyroid labs Free T4 & FT3 had been too for a while high last year when I was first diagnosed with AFib. I had hoped AFib would go totally away once I got thyroid settled. It did get better, but since I am up & down still trying to find the right mix of thyroid meds, it has stirred up the AFib a bit more.

If I am not vagal or mixed, I am thinking of returning to the beta blocker. Last yr, the 1st thing they did was put me on metoprolol, but I got some side effects & reflux was one so my endocrinologist switched me to carvedilol (& the reflux disappeared), but I did see where they have cardioselective beta blockers & this was not one of them, so I wondered if it was a good idea for me to be on it instead of trying another cardioselective BB or maybe trying metoprolol again. If a BB is not cardioselective, won't it be toning down all sorts of things in my body that might not need it. I will say I tolerated the carvedilol without side effects, but not sure of long-term effects of taking meds like this. Do they cause reflux most of the time or perhaps sometimes do the opposite - I know how all those side effects listed for every drug don't mean they all happen much less in all people.

My AFib episodes don't feel terribly bad (just the scare of having them at all - bec of stroke risk) & I convert on my own in a relatively short time, sometimes a few hrs.

Why can't you take anticoagulants? I am not sure if you saw in another post that I do take 3000 mg of cod liver oil, 240 mg of ginkgo biloba which are also blood thinning. I am now thinking of getting that Kardia app from AliveCor so I can really know if I am in afib or not & track it for real.

I wonder if anyone on this board created by Hans Larsen has read his book Lone Atrial Fibrillation Towards A Cure. I have not seen it referenced in the posts I have read so far. I am learning a lot from it and he has impressive credentials one can see as well as the drs in the forward & the preface being pretty impressive. There is just so much to take in, and especially after reading so many thyroid books & being on support groups off & on for the last 13 years. It really eats up time!
Re: Not sure what type of LAF I have
December 02, 2018 07:14PM
Madeline:

I take Synthroid for my thyroid, I started taking it after my thyroid was nuked (didn't know a lot then, no computer) but since I was on it for so long I remained. Also natural thyroid meds are harder to keep the thyroid hormone in the proper dose. Have you taken Iodoral a iodine supplement, it worked great for a number of years then I got a few hives so I stopped the Iodoral , they have another iodine supplement that a few people have told me works for them Lugols, you probably have heard of them and perhaps have tried them they are taken in conjunction with your thyroid meds, some people on this site have posted that iodine has helped with their AF.

When I was first diagnosed with AF my doc. put me on Coumadin, I was on it for maybe a month then I started getting bloodshot eyes and a sac of blood in my thumb when I just used a little pressure on it. My EP told me to stop the Coumadin, which I did and a few weeks later I had a nose bleed and coughed up some blood clots, thank goodness I coughed them up they could of traveled to my brain. My EP wants me to take Eliquis but I can't, of course it worries me, as I said I do take aspirin which isn't the best. I try to keep myself in good health, I have a large garden, fruit trees and berries, I eat them all fresh and can and freeze them, hopefully that helps. I have a Holistic doctor that takes my blood work twice a year, checks me out.

You said you are not in AF for very long, 3 or 4 hours isn't long, usually I am in it a little longer and my Holistic doctor said I wasn't in AF long enough to stroke. There have been a few people on this board that were on an anticoagulant and had a stroke, people without AF gets strokes, my half brother had a stroke about 3 years ago and never had an episode of AF, my sister-in-laws father had a stroke, no AF. So, we have to decide and do the best we can.

I read one of Han's early books, the name of it is "Thrombosis and Stroke Prevention" you must be reading his most recent book.

liz
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