New to AFib and my head is spinning

Hello! My name is Linda. I live in Minnesota and I am a senior citizen. I have had 2 afib episodes....One last April and one in December. Both resolved in a few hours. I have always dealt with anxiety on and off...but this AF has really kicked my anxiety into high gear. Also, for background, I do not tolerate medications well at all. It’s difficult to find one I can take, many I cant take and and sometimes I need to take a much smaller dose than is normally prescribed.

Yesterday I saw my EP for the first time. He comes highly recommended and I was very excited to see him and put “My” plan into place. Well, I found out a number of things about AF that really surprised me. He wants me to take Sotalol and Eliquis.....the blood thinner forever. Well, I dont tolerate Beta blockers....so I know the sotalol is out and I am very anxious about taking a blood thinner.

I just thought I could get an ablation and that would be it....no meds. I was surpirsed that is not the case. He said even if I had an ablation, my Chad score is 2 and I would need to be on a blood thinner for the rest of my days. That is a hard thought for me to grasp. I am not even sure I can tolerate it and then to think of taking it forever....with the risks that come with taking it.....but if I dont take it.....I could have a serious stroke....I feel like I am in a box. I dont like either option.....and I am so darn anxious about it that my old palpitations have returned with a vengeance.

I am pretty clear about not taking any anti arrthymics (sp)....I will have an ablation before doing that...but I cant figure out the blood thinner. I’m a 2 on the Chad test due to my age and that I am a woman.

I am curious about what others have done about blood thinners....if you are a 2. Is it dumb to even consider not taking a blood tthinner? Any feedback you could offer would be appreciated.

This is a scary and anxious new world for me. Thanks for taking the time to read this.
Linda

You can''t just substitute an ablation for anticoagulants. It doesn't work like that. If you choose ablation, you're going to be required to be on anticoagulants before the procedure and then for at least three months afterwards. It's not just dumb -- they literally won't do the procedure if you refuse anticoagulants.

Depending on the results of the procedure, you might be able to come off them after three months, but that's no guarantee at all. It's possible you would have to remain on them for life following an ablation.

Your fear of anticoagulants isn't entirely reasonable. Most people experience few or no side effects from them. I get it that you've had difficulties with other meds, but all you can do is try a drug and find out what it does. Before you even considere ablation I think you'd want to get onto an anticoagulant and find out if you can tolerate it because if you can't then they would either need to find one you can tolerate or cancel the ablation.

And yeah, as you already know, your CHADS score plus having afib means you should already be on an anticoagulant. Trust me, no drug you'll ever take will even vaguely approach the destruction to your life that a stroke will deliver, and the odds of stroke are far higher.

Carey,

With a Chard score of 2 the chance of a stroke is 2% and when taking an anticoagulant the chance of a blood bleed is 3%, is this correct?
The odds are better to take nothing?

Linda:

You only have had an episode of AF 2 times in one year for only a few hours each time. I think your doctor is trying to cover his butt, I wouldn't take a blood thinner for only 2 short episodes at this time. With a chad score of 2, which is because you are a woman and your age is ridiculous to prescribe a blood thinner.

There is a procedure called 'The Watchman device" it is a small plug that is inserted in the left atrial appendage which stops any blood clots forming in that appendage, so if you went for an ablation you could also have that done and you would not have to be on blood thinners, except for a very short time after the ablation.

liz

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colindo
With a Chard score of 2 the chance of a stroke is 2% and when taking an anticoagulant the chance of a blood bleed is 3%, is this correct?
The odds are better to take nothing?

It depends on which anticoagulant we're talking about and a number of other factors, especially age. (Bleed risk goes up with age, but so does stroke risk.) The 3% number is about right for warfarin, but it's too high for the newer oral anticoagulants. If we take Eliquis as an example, the risk of major bleeds is about 2%. So yes, with a CHADS 2 it's a tossup, which is why the guidelines only say an AC should be considered with a score of 2. Other individual factors might tip the decision either way.

But my point wasn't really about whether you should take an AC now. My point was you can't assume that an ablation will guarantee you can stop taking them. There are several scenarios where you could end up requiring them afterwards for longer than the minimum three months. For example, there's the obvious possibility that the ablation fails and you come out of it with flutter in addition to the afib. That happened to me multiple times. Another possibility is the EP has to isolate your left atrial appendage. If he has to do that, now it will depend on the blood flow in your LAA. If it's inadequate six months after the procedure, you'll either have to remain on an AC indefinitely or have a closure device inserted, such as the Watchman that Elizabeth mentioned. However, having a closure device inserted is an even bigger decision than having an ablation. Although they look very promising, the devices are fairly new, there isn't long-term data for them, and insurance companies often refuse to pay for them because they consider them experimental.

I'm not trying to steer you in any particular direction. I just wanted to correct the mistaken notion that an ablation guarantees freedom from anticoagulants. It does not. That may be the result, and hopefully it would, but it's not a guarantee.

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Elizabeth
I think your doctor is trying to cover his butt, I wouldn't take a blood thinner for only 2 short episodes at this time. With a chad score of 2, which is because you are a woman and your age is ridiculous to prescribe a blood thinner.

It's not ridiculous and he has no need to cover his butt. He's offering his best medical advice based on the current guidelines and the particulars of Linda's medical history and current situation. A large percentage of EPs would make the same recommendation. Those guidelines are based on actual evidence and risk factors, not random opinions of people on the internet. Also, the number of afib episodes she's experienced isn't as big a consideration as was once believed.

In my experience the vast majority of doctors offer honest advice to their patients and sincerely want to do the right thing for them. There's no reason to assume dishonesty unless there's actual evidence of dishonesty, and there is none here.

Well I am learning a lot and this conversation is of great interest to me. I believe my EP is doing what he believes is best and following guidelines......but sometimes guidelines are JUST guidelines...that is what I am looking for..what other people have done....how they decided.

Here is what I understand my EP said about AFIB. Once you are diagnosed with AFIB....you are at a greater risk for stroke....you don’t have to be IN afib to have a blood clot/stroke...I think he said once you have had AFib.....the lining in your upper heart has changed forever....and that is what creates the stroke risk...or the risk of blood clots.....so 2 episodes or 20....I am at risk for blood clots because I have AFib...forever. He also said the risk goes up each year...even if I dont have any episodes this year.
I think that is right? Does that make sense?

So, Carey, yes I understand now that if I have an ablation, I will still need thinners......I just wonder if there is any wiggle room in the guidelines.....I know I will have to take something at some point...would like to put it off if I can.

Also, I am clear about not taking rhythm drugs...... I will opt for ablation as soon as he says “go”....which obviously ......now is not the time....maybe I can go for years......that’s what I hate....not knowing when the next episode will come.

Thanks guys!

linda;

"Here is what I understand my EP said about AFIB. Once you are diagnosed with AFIB....you are at a greater risk for stroke....you don’t have to be IN afib to have a blood clot/stroke...I think he said once you have had AFib.....the lining in your upper heart has changed forever....and that is what creates the stroke risk...or the risk of blood clots.....so 2 episodes or 20....I am at risk for blood clots because I have AFib...forever. He also said the risk goes up each year...even if I dont have any episodes this year.
I think that is right? Does that make sense? "

Sorry I never heard of that, because you had an episode of AF, even only one of two episodes in a year, that you are at a greater risk for stroke. There has been a few people that have come to this site and have had AF which they have conquered, George N. for one that posts here regularly and does not take a blood thinner. It isn't just AF but a combination of AF and risk factors such as Hypertension, diabetes, Heart failure, left Ventricular ejection fraction below 0.35, coronary artery disease, presence of prosthetic heart values thyrotoxicosis, a prior stroke, a prior heart attack or TIA. So, if you have no underlying heart problems you are at no greater risk for stroke than is the general population, this is accordance to Hans Larson (founder of this site) from his book "Thrombosis and stroke prevention".

Perhaps your doctor meant that AF can cause inflammation and fibrosis of atrial walls which are factors that can lead to a stroke, but not after
only 2 short episodes in a year. Emboli in the LAA (left atrial appendage) are more common among afibbers with severe heart disease and a reduced left ventricular ejection fractional.

There are some natural methods that you could try instead of a blood thinner at this point in time; vit. B, vit c, Potassium, Magnesium, fish oils, ginkgo biloba and Nattokinase.

Liz



Edited 1 time(s). Last edit at 03/16/2018 08:51PM by Elizabeth.

Carey said;

He's offering his best medical advice based on the current guidelines and the particulars of Linda's medical history and current situation. A large percentage of EPs would make the same recommendation. Those guidelines are based on actual evidence and risk factors, not random opinions of people on the internet. Also, the number of afib episodes she's experienced isn't as big a consideration as was once believed. "

That includes you as well, you are giving your opinion or ,whatever you choose to call it, on the internet.

liz

Quote
lds001
Here is what I understand my EP said about AFIB. Once you are diagnosed with AFIB....you are at a greater risk for stroke....you don’t have to be IN afib to have a blood clot/stroke...I think he said once you have had AFib.....the lining in your upper heart has changed forever....and that is what creates the stroke risk...or the risk of blood clots.....so 2 episodes or 20....I am at risk for blood clots because I have AFib...forever. He also said the risk goes up each year...even if I dont have any episodes this year.
I think that is right? Does that make sense?

That is exactly right. He apparently explained it very well.

Quote

So, Carey, yes I understand now that if I have an ablation, I will still need thinners......I just wonder if there is any wiggle room in the guidelines.....I know I will have to take something at some point...would like to put it off if I can.

You might still need to take anticoagulants. It's not a sure thing and you could get lucky and come off them. There's actually a pretty good chance of that if you have an ablation by to top-shelf EP.

My ablation was 11 years ago and I was on warfarin for one month - then NOTHING after that. No meds of any kind, but I do take potassium, magnesium and taurine.

Ken, That’s wonderful...I think you are very fortunate!

Linda

Hello Linda... and welcome.

I can appreciate your questions and concerns about being a senior and taking anticoagulants and can also relate to your sensitivity to medications issue. I don't tolerate them well, either. Regardless of whether you consider an ablation procedure or not, the reality is that as we age, the risk of clot formation becomes higher with time, especially, if you have underlying factors that contribute to what is referenced as 'the tendency to have thick, sticky blood... or hyperviscosity.'

Hyperviscosity is not reserved exclusively for seniors as it is often found in those with inflammatory conditions that contribute to hyperviscosity. Various meds including aspirin are often prescribed to reduce the inflammatory process but the best approach is to learn what's causing the inflammation in the first place. It may be food or chemical sensitivities, gut inflammation from yeast infections, immune stress, etc. emphasizing the observation that it's best to identify markers of inflammation and take steps to eliminate or lower as much as possible and thereby lowering the hyperviscosity/adverse clot risk as well.

While you are deciding how to proceed, definitely consider using the highly effective form of vitamin C… known as Liposomal Vitamin C to help lower clot-promoting inflammation. There are also specific enzymes that reduces blood fibrin that promotes blood platelet aggregation. LipoC keeps you healthy overall.

Here’s links to previous posts here on clot risk and related.

[www.afibbers.org]
[www.afibbers.org]
[www.afibbers.org]
[www.afibbers.org]

The most important issue, Linda, is for you to be safe and not at risk for forming clots.
It’s very useful to know the results of the related blood tests that indicate your systemic
risk factors that contribute to hyperviscosity and the tendency to form clots discussed in the posts..

Let me know if I can help you sift through the details. I realize it can be overwhelming and you don't need more stress.

Best to you,
Jackie

Hi Jackie,

Isn't there a correlation between blood viscosity and blood sugar levels?
I have always thought there was.
A more simple test would be a fasting blood sugar test which you can do yourself at home.

Colin

Jackie:

Can you expand on this a bit? I've been taking a high quality vitamin C powder (2,000mg/day) for years. It's just "regular" vitamin C powder - not Liposomal vitamin C. What's the difference between the two? Why is liposomal "better?" And if it's better, can you get by with less or would I still be able to take the same dose - 2,000mg/day?

Travis

Quote
Jackie


While you are deciding how to proceed, definitely consider using the highly effective form of vitamin C… known as Liposomal Vitamin C to help lower clot-promoting inflammation. There are also specific enzymes that reduces blood fibrin that promotes blood platelet aggregation. LipoC keeps you healthy overall.

Best to you,
Jackie

Travis - Here's my post on the Liposomal C version FYI


Healthy Aging Tip #3 - Fibrinogen and Vitamin C
December 16, 2015


Healthy Aging Tip #3 - Fibrinogen and Vitamin C

While we recommend using the fibrinolytic enzyme, nattokinase, as an effective control for fibrinogen, there are other useful considerations including vitamin C. I thought members would enjoy reading about this since we are all highly aware of the importance of avoiding adverse clotting risks whether or not we have active arrhythmia.


Fibrinogen: The protein from which fibrin is formed in the normal blood-clotting process.

We often mention the importance of monitoring fibrinogen levels when we discuss elevated fibrinogen and stroke or MI risk factors. There are three highly valuable, very informative books by Board Certified Cardiologist, Thomas E. Levy, MD, JD, containing key points that everyone, and especially afibbers, should be aware of and act upon.

Dr. Levy is the one of the leading vitamin C experts and writes prolifically on the often-ignored science behind the power and health benefits of vitamin C used for a multitude of ailments that are easily remedied with high doses of the right form of vitamin C. The Reference section lists the books and as you’ll note from the titles, they grab your attention. They contain highly significant, science-based healthy tips relating to the use of vitamin C. There are hundreds of scientific references for each book, also noted in References. Much of this is not new science. It’s been well documented for decades but many obstacles have prevented using vitamin C for standard treatments because of restrictions in traditional medical education, medical practices and governmental oversight/politics. Dr. Levy emphatically blows the lid off these suppressions in his three books on the topic of the prevention and treatment of disease with vitamin C.

I’m especially pleased with Primal Panacea, but also find priceless information in the other two. Often good used copies are available online … check out after-Christmas sales and treat yourself to some very important health tips. Make it a priority to learn about this reliable remedy.

Vitamin C is the “Primal Panacea” and it’s noted that: “…..documentation proves when one’s blood levels of the “primal panacea” are sufficiently high, it prevents and cures cancer, heart disease, infectious and degenerative diseases and can neutralize and even reverse damage from virtually all toxins, venoms, and radiation!”

This clip is about Fibrinogen and a couple of other heart health tips… but I wanted to provide some background first.
So now: Here’s a snapshot of this important topic which is just a few important clips of many… gleaned from Dr. Levy’s books (quotes and paraphrasing).

… “Fibrinogen determines blood’s thickness or viscosity and plays a role in how readily platelets will clump together to form clots and clearly correlates to decreased vitamin C as it relates to elevated fibrinogen levels. It is also possible that a C deficiency, itself, directly results in elevated fibrinogen levels.

Elevated fibrinogen levels in the blood can increase both the size of atherosclerotic plaques as well as the likelihood of sudden, complete blockages by acutely formed blood clots onto the developing plaques.” This would apply to clots in brain blood vessels at diseased sites in arterial walls in stroke victims and as well as victims of heart attacks who have sudden blockages in coronary arteries supplying the heart muscle. “

Studies show:
• Increased fibrinogen levels is an independent risk factor for CV disease.
• Higher fibrinogen levels correlate to lower Vitamin C levels
• In stroke patients, blood fibrinogen was up; and blood vitamin C, was down
• Supplementation with vitamin C (1,000 mg) substantially increases the ability in healthy people as well as those coronary heart disease, to dissolve clots (fibrinolytic activity) – and persists as long as the increased blood vitamin C is maintained.
• Smoking is known to be one of the greatest consumers of vitamin C; passive smoking probably also increases heart disease through elevated fibrinogen levels and lowered vitamin C levels.

• Another heart risk issue: Low vitamin C levels and high heart rate or tachycardia
Research established that heart rate is an independent predictor of not only cardiovascular but also noncardiovascular and overall mortality in middle age males. (2001)…page 205 – Stop America’s #1 Killer. It was found that higher heart rate not only predicted higher rate of heart death, it was one of the most important independent risk factors of overall mortality. Risk of death increased by about 50% for each 20 bpm increase. 2004 studies asserted that elevated heart rate is a ‘major” risk factor for CV disease and that vitamin C depletion or deficiency is at least one significant contributor.

The vitamin C dosing regimen includes a precaution for Patients with Kidney Disease as they need to hydrate well when using to ensure high urine volume. Since Vitamin C is a powerful antioxidant that may also cause the body to detoxify too quickly. If you experience gastric upset, muscle aches or flu-like symptoms, drink plenty of water to help flush out the toxin overload. Vitamin C in any form can lessen the blood-thinning effects of Coumadin or warfarin so should be used under medical supervision. (LivOn Labs)

In Curing the Incurable, Dr. Levy devotes Chapter Six to “Practical Suggestions” on use and dosing for specific precautions.

In Primal Panacea, Dr. Levy details the Liposomal delivery form of vitamin C which offers a much higher dosing range that is bowel tolerable and more convenient than IV infusions which are effective but not always easily available for everyone.

I’ve used the liposomal C form daily for several years at various dosing levels and have not found any adverse effects…other than pricey, but overall, the convenience and efficacy outweighs the cost factor. It’s effective for so many ailments, it should be in everyone’s “wellness arsenal.” The packets of Lipospheric C are very convenient for travel.

Primal Panacea (p 133) in the “practical suggestions” segment Dr. Levy offers dosing regimens including an initial C-flush to cleanse the bowel and reduce the body’s toxin exposure since the bowels benefit from healthy cleansing. The preferred form for this is sodium ascorbate powder. Do not use calcium ascorbate.

The Liposomal form does not cause a bowel flush because it is almost completely absorbed into the body. Some people use a combination of the powder along with the liposomal form to bowel tolerance levels.

The equivalency dosing of liposomal C to the powder

One packet delivers 1,000 mg of the liposomal C.

The substitution equivalencies (Lipo C equivalent to C as ascorbic acid )
1,000 mg = 3,000 – 4,000 mg powder
2,000 mg = 8,000 – 10,000 mg powder
3,000 mg = 12,000 – 18,000 mg powder…. (page 133 of Primal Panacea)

Typically, no bowel tolerance issues or stomach distress. When I thought I had active Lyme disease, I dosed for 5 days with 5,000 mg of the Liposomal C… or 5 packets a day. I did not notice any bowel or other issues. I then used 2 packets or 2,000 mg LipoC for several months and continue daily with either 1 or 2 packets.

Check out these links and play some of the online video clips with Dr. Levy and the Vitamin C story; especially the hour-long video on Vitamin C and Suppression.

[www.google.com]


Livon Labs’ Liposomal or Lypo-Spheric products contain phospholipids extracted from non-GMO soy lecithin. Virtually all of the soy protein is removed from the phospholipids during the extraction process. While LivOn Labs does not guarantee there are no trace amounts of soy protein in these products, they routinely test with an independent laboratory. To date, no detectable amounts of soy protein have been found. LivOn Labs products are free of sugar, GMO, dairy, gluten and hexane.

Read more at LivOn Labs about Liposomal C….
[www.livonlabs.com]
[www.livonlabs.com]

Healthy regards,

Jackie



References

Fibrinogen: [labtestsonline.org]

Books by Thomas Levy, MD, JD

Primal Panacea (2011) - 2129 Scientific References.
This link is a pdf of Chapter 1 [www.naturalhealth365.com]

Curing the Incurable, (2002) - 1200 Scientific References

Stop American’s #1 Killer – (2006) - 650 Scientific References


“Comparing the bioavailability of all other oral vitamin C delivery with your oral liposomal delivery is like comparing a squirt gun to a fire hose. Not only am I convinced that the efficacy of Lypo-Spheric(tm) Vitamin C far surpasses any traditional oral vitamin C supplement, but my recent personal experience with it suggests that it may sometimes be better than IV injection.”

“Man's body was designed to function best with high blood and cellular levels of vitamin C - synthesized as needed by the liver. Due to an inborn error of metabolism, the vast majority of us no longer have the ability to make it, but that does not lessen our need for vitamin C or the benefits derived from it.”

So bottom line......would it be fair to say ........that with a Chad score of 2 ( 70 y/o and female), with two AFib episodes in one year, ....that starting Eliquis is a judgement call?

Quote
lds001
So bottom line......would it be fair to say ........that with a Chad score of 2 ( 70 y/o and female), with two AFib episodes in one year, ....that starting Eliquis is a judgement call?

Yes.

It helps to remember that outcomes matter more than risks. If you have a stroke, you may very well suffer permanent and irreversible brain damage. If you have a bleed, you’ll be treated and leave the hospital the very same person you came in as.

THAT is a very good point. Thank you......

Jackie:

Thanks for all the great info on lipo vitamin C!!

I'll be diving into all of it shortly. Just looking over the dosage equivalents very quickly, it appears that if I want to take the equivalent 2,000mg of regular vitamin C per day, I would only need to take about 500mg of lipo vitamin C...interesting. Lot's of good stuff here to digest (no pun intended).

Linda:

I didn't mean to hijack this thread by taking it down the vitamin C route. As you and I have discussed privately, your situation is not an easy call. You're right on the border with a score of 2. If the blood thinners really make you nervous and you decide NOT to take them, just be sure you take natural blood thinners - especially vitamin E and nattokinase.

Travis

Thanks Travis.......I’m working my way toward a decision. . Linda