Great Improvement At Last!

As of the last couple of years, I've only been on the forum a few times. I've been exasperated by continuing to have issues since the ablations... However, I owe a great deal to this forum...

My history: Permanent afib (no meds worked) for 4 years; had Natale ablation in 2007 and 2nd ablation by Dr. Tchou in 2009; neither ablation kept me in rhythm - all episodes out of rhythm were flutter. Last flutter was in Feb of this year - Dr. Tchou put me on Flecainide. Had to cut back to 25mg but even that made me ill during the day. Now take 25mg in the evening only with no issues. (Been on Tikosyn many times - never worked...tried Rhythmol but made me VERY ill first dose.)

Current: This is the longest I've been in rhythm since this all began 10.5 years ago. I have been seen and treated by the best - cardiologist professor at UofM, Natale and Tchou at CCF, and Dr. Nusbaum at CHM here in MI.

Here is my take as to why I am doing so well now - wanted to provide this in case it helps anyone else. I owe a lot to this forum.

Issues:

Firstly, I had been anemic since a child. Dr. Nusbaum found I was gluten intolerant so I went off gluten in 2004. This did not clear up my arrhythmia issues but I did go out of heart failure after about a year (and my heart rate was still high when in Afib). Going off gluten did not cure anemia - the anemia actually got worse I assume because I was on Coumadin. None of the docs really honed in on the anemia...this is a tickler....

Secondly, I have a mutated gene that prevents me from adequately aborbing B vitamins. Dr. Nusbaum found this. We tried treating this but my heart would always go into PAC's and perhaps arrhythmia when I took B vitamin supplements. Even occurred at times with Myers IVs.

Thirdly, I have Hashimoto's. Dr. Nusbaum treated me for this but I found a pattern of the thyroid med (Armour and then Naturthroid) causing my heart to either go into PAC's or arrhythmia. As of Feb of this year I went off the thyroid med altogether. I found by doing this that I had much less adrenaline issues - prior it seemed like any form of stress would cause an increase in adrenaline.

Treatment:

This took months for me to figure out and many months to come to a positive result. (I also could never stand longer than 1 minute - usually 30 seconds without feeling weak...this had been a problem since I was a child.)

I wasn't aware that anemia could cause arrhythmia issues - my dad had surgery and went into afib a couple of years ago; when I mentioned this to my cardiiologist he immediately said it was because of the procedure that he prob lost blood and it made him anemic. A light bulb went off for me then and I studied arrhythmia caused by anemia.

I began taking reacted iron (saw that on this board as well). This improved the amount of PAC's - prior I had them pretty much all day and my heart rate would go up with any form of exertion. Just really zapped me - during that time, my husband had to do all the physical work. I could work but only at my desk.

However, I still had issues including arrhythmia episodes and still had anemia so I studied further. Turns out you need vitamin B2 to adequately absorb iron. I have always been low in B2. So I began to take the iron with ATP Co Factors. Not long after that the PAC's began to get less frequent.

After a couple of months I then tried taking a B complex - voila - no heart reaction. I then added more supplements as well - high dose of vitamin C, etc. No heart reaction. Prior, my heart would start skipping immediately after even taking a magnesium capsule (I take magnesium and potassium throughout the day).

However, it was weird, I noted that I was having PAC's every other day - it was something I could count on. I tried all different things thinking it was something I was doing wrong but to no avail, it always occurred every other day. I would try all my tricks including grounding and it wouldn't help. So every other day I had to deal with this.

After a period of months I tried taking the thryoid again. Started at 1/8 grain (split 1/4 in half). Had no issue - no extra adrenaline, etc. So I increased it to 1/4 grain - that was 1.5 weeks ago. As of yesterday, I didn't have the every other day PAC's.

At this point, I'm not feeling extra adrenaline, my heart is not irritable as it was before - I have even been able to lie down in a flatter position (since 2009 ablation I had to sleep at an angle or my heart would start skipping terribly). I have now added CoQ10 to my supplements.

I'll let you all know if this just turns out to be a lark but I don't think it is. I now strongly believe that the root cause of my arrhythmia was anemia which was being caused by my not being able to adequately absorb B vitamins - this probably was an issue for me at birth - I was born with dark circles under my eyes per my mother. Gluten intolerance and Hashimotos joined the mix. Coumadin made it all worse and I believe it is what caused me to go into permanent afib (I kept telling the docs that I was having a horrid monthly time with Coumadin).

I have started physical therapy because my legs are a mess after not being able to do much physical activity for 10 years. No heart issue from it and I've started to work out in my home gym...no issue there either.

Here's hoping.

Theresa

Hi Theresa,

Wow, that is an inspiring and very complicated story! Great job figuring out all the details.

I've marked this post with "The List" so that it can possibly be found in the future. The idea of The List was conceived by PeggyM nine or so years ago as a way to mark success stories for future reference. CR 61 is a compilation of some of those stories <[www.afibbers.org]

Thanks for posting and here's to your continued success!

George

One of the things that is instructive about Theresa's post is the amount of problem solving she used to create a workable solution and her persistence. While her specific techniques may not apply to all, her approach is an excellent one.

Why would Coumadin cause one to go into permanent AF? No one has said this about Coumadin.

Liz

Hi Liz and Theresa,

Coumadin alone is not likely to cause one to go into permanent AFIB. It maybe that some of the side effects of Coumadin that Theresa was experiencing ( I know them well too) coincided with the underlying progression of her atrial structural remodeling that was the likely core driving agent for conversion to persistent AFIB such that the flip to persistent AFIB (another thing, alas, I also know all too well) seemed to be associated in time with her struggles with Coumadin.

And Theresa, your interesting story reads like a textbook example of very common underlying gradually progressive endocrine dysfunction .. possibly dating back to childhood and that is not increasing with aging and driving your AFIB.

The prior excess adrenaline release which is due to insufficient cortisol production on demand, as needed, which caused the adrenal glands to revert to its backup stress hormone Adrenaline. This excess adrenaline production and release is a direct trigger for AFIB. and the fact that restoring Vitamin C in sufficient doses along with solid doses of B vitamins as helping your ablations to finally take hold and start to work for you is a dead ringer give away that your ongoing issues post ablation were, at least in part, driven by an untreated dysfunctional adrenal and thyroid system.

A single ablation is rarely enough for permanent AFIB to begin with, and that you have the follow up with another doc rather than Natale who did your first and was very familiar with your case is unfortunate, though Dr Tchou is a skilled EP and trained for some years with Natale as well, its still good if you have a very skilled ablationist to be able to follow through with the process of ablations with them, if possible. I realize Dr Natale left Cleveland Clinic after your first one so they likely referred you to Dr Tchou for follow up procedures too.

In any event, it was going to take more than one ablation though with Natale he is normally finished with two for most people, occasionally three. The good news is that you have found this metabolic contributor to continued instability in your case and its great that you are getting more control now from the ablations you had.

I do want you to understand that the odds of you having the same degree of success just with the thyroid and nutrient restoration coming as you did from four years plus of permanent AFIB would have been extremely unlikely! The ablations set the foundation for you so far but needed too the added help you are providing now to stabilize and improve your biochemistry and hormone status.

This is a very good example of why one should not depend solely on ablation and sometime you cant depend solely on the nutrient/hormone restoration. This is particularly true when atrial remodeling has progressed to the point of persistent or permanent AFIB!

A combination of an expert ablation or two along with learning about and taking care of nutrient and hormone restoration is often the key for much greater stability and freedom from the beast!

Back to your hormonal issues, the anemia is often a common co-companion with low thyroid/adrenal function in which low Ferritin (a measure of storage iron levels) and low B12 are also common.

Even the dark circles under your eyes when young is a major red flag for early adrenal insufficiency as is your report of feeling weak and low energy so easily even when young.

For thyroid issues too be sure and visit and read: Stop the Thyroid Madness website

Also visit this site for some good insights on bioindentical hormone replacement of cortisol: Cortisol replacement to get some good direction.

You may also could use a touch up ablation to button things down for good. But its very possible too your first ablation might be good enough to keep things mostly quiet as long as you continue with your program of better understanding and treating your underlying hormonal deficiencies.

These issues are such a huge driver for so many people with AFIB, but most allopathic only docs have not be trained to recognize this yet and so alas, you will mostly get blank stares or outright derision when you bring it up to a regular GP, Endocrinologist or Cardio who has not been board certified in BHRT ( bio-identical hormone replacement therapy).

Your two ablations likely set a good foundation for you and a third touch up, if you start to have more breakthroughs in spite of your new program for biochemical repletion, then don't hesitate to contact Dr Natale again to make sure you don't have any action that has progressed into the coronary sinus or left atrial appendage ( common findings in people who have had persistent and permanent AFI as he is a real expert in dealing with that area but he was just beginning to pioneer and develop that approach back in 2007 and certainly would not have addressed that area in a first ablation.

I'm not sure than Dr Tchou uses that more advanced protocol yet or is very experienced in that phase of ablation at this time.

Great to hear things are working so much better for you and you are definitely on the right track Theresa!

Best wishes,
Shannon

The Coumadin caused me to go into even worse anemia. I didn't go into much detail here but I had MAJOR issues every month. I told every doc about this as well as those that reviewed my INR - the most anyone suggested was that perhaps I needed to see my GYN. They were adamant that I had to stay on the Coumadin so I did. I advised Dr. Natale of this after the 2007 ablation and he allowed me to get off of it and provided me Lovenox injections instead. I now use those when I go out of rhythm and advise CCF of such when I have to be cardioverted.

However, I never treated the anemia until about 14 months ago and that is when the PAC's began to go away. I didn't treat it consistently as I was always afraid of taking any form of supplement.... After the arrhthymia in Feb of this year I decided to hunker down and just take it anyway - I also felt a bit more confident because I was taking Flecainide.

(I can't tell you all the fear I had every evening I went to bed since the 2009 ablation. The flutter episodes were just HORRID and other than the first couple I had to be electrically cardioverted.) The flutter episodes always occurred at night - sometimes when I was fully awake. My heart was VERY irritable when I laid down. I even purchased an adjustable bed which ended up not being such a good thing because it puts out a tremendous amount of EMF..another trigger for me. (But like the other triggers have done since I treated the anemia and B vitamin issues, it's not an issue any longer...I used to have a great deal of issues with EMF.)

And the PAC's during the day were debilitating.

Hope this helps.

I also have low B vitamins and two MTHFR mutations (which interfere with B vitamin absorption).
I also cannot take B vitamins, they are too activating. I have taken Metafolin (L-methylfolate), the absorbable folate for MTHFR polymorphism, in the past but it may be too activating now.

I also have early-stage Hashimoto's (thyroid hormones in normal range). My ferritin is low-normal.

The MTHFR mutation might have played a role in my father's family's terrible history of heart disease. (Fortunately, I have no sign of heart disease.)

Recently, I found that the bifidobacterium adolesecentis species of probiotics synthesize B vitamins [microbewiki.kenyon.edu], and started taking them with no ill effects.

I'm not sure how this affected my afib as I had an ablation 6/27/13 with no afib since, but the post-op palpitations have pretty much ceased.

Thanks for the tip about reacted iron (Albion Ferrochel Ferrous Bisglycinate) and ATP Co Factors.

______________
Lone paroxysmal vagal atrial fibrillation. Age 62, female, no risk factors. Autonomic instability since severe Paxil withdrawal in 2004, including extreme sensitivity to neuro-active drugs, supplements, foods. Monthly tachycardia started 1/11, happened only at night, during sleep, or when waking, bouts of 5-15 hours. Changed to afib about a year ago, same pattern. Frequency increased over last 6 months, apparently with sensitivity to more triggers. Ablation 6/27/13 by Steven Hao.

Iatrogenia, the Reacted 'Ferrocel' Iron Bisglycinate us a very good form for many people and tends to be a lot easier in the stomach and not so constipating.. Be sure and take it with Vitamin C and just after the evening meal, instead if in the morning, which also tends to lessen constipation side effects.

Shannon

The B complex I've been able to take with no effect is the MegaFoods brand. I take the UnStress which also has zinc, etc. I have also been able to take their vitamin D which I could never take before - even tried cod liver oil and couldn't take it.

I will try the recommended reacted iron. I've been taking in the am with the rest of supplements including the thyroid. I'm aware that you are not supposed to take thyroid at the same time but I'm doing it on purpose to lower the effect so that I can slowly increase.

An update: I did get PAC's two days ago so I increased my thyroid by an 1/8 grain - will see what happens today because it's the every other day - yesterday I had no issues at all.

This is an improvement as it had been 6 days between the PAC's - again these are very uncomfortable - heart rate increases easily so my physical activity pretty much comes to a stop until I get through them. They start out very slow and then ramp up to every other beat. I tried grounding and then an afternoon magnesium foot bath to no avail. I later took potassium and mag glycinate (again) and they went away.

Theres

Iatrogenia Wrote:
-------------------------------------------------------
> I also have low B vitamins and two MTHFR mutations
> (which interfere with B vitamin absorption).
> I also cannot take B vitamins, they are too
> activating. I have taken Metafolin
> (L-methylfolate), the absorbable folate for MTHFR
> polymorphism, in the past but it may be too
> activating now.
>
> I also have early-stage Hashimoto's (thyroid
> hormones in normal range). My ferritin is
> low-normal.
>
> The MTHFR mutation might have played a role in my
> father's family's terrible history of heart
> disease. (Fortunately, I have no sign of heart
> disease.)
>
> Recently, I found that the bifidobacterium
> adolesecentis species of probiotics synthesize B
> vitamins
> <[microbewiki.kenyon.edu]
> terium_adolescentis>, and started taking them with
> no ill effects.
>
> I'm not sure how this affected my afib as I had an
> ablation 6/27/13 with no afib since, but the
> post-op palpitations have pretty much ceased.
>
> Thanks for the tip about reacted iron (Albion
> Ferrochel Ferrous Bisglycinate) and ATP Co
> Factors.

I just checked that is the iron I've been taking. I do take with both ATP Co-Factors and 5000mg of Vitamin C (Optimox). Just increased vitamin C to 5000 had been taking 3000.

Theresa

Is there some reason to take iron when ferritin is not low? I understand excess iron can be harmful.

______________
Lone paroxysmal vagal atrial fibrillation. Age 62, female, no risk factors. Autonomic instability since severe Paxil withdrawal in 2004, including extreme sensitivity to neuro-active drugs, supplements, foods. Monthly tachycardia started 1/11, happened only at night, during sleep, or when waking, bouts of 5-15 hours. Changed to afib about a year ago, same pattern. Frequency increased over last 6 months, apparently with sensitivity to more triggers. Ablation 6/27/13 by Steven Hao.

No Iatrogenia, in most cases of optimal to high ferritin there is no need to take iron. There are some exceptions when ferritin is being driven high not by excess iron stores but by other biochemical imbalance and in that case you can still have low functional iron with an artificially high ferritin reading, but for a good rule of thumb, 70 to 100 is plenty Ferritin for women while anything below 50 is suspect and often with negatively impact both thyroid and adrenal function as well.

Anything below 40 for a women definitely needs treatment.
Shannon

Thanks, Shannon.

______________
Lone paroxysmal vagal atrial fibrillation. Age 62, female, no risk factors. Autonomic instability since severe Paxil withdrawal in 2004, including extreme sensitivity to neuro-active drugs, supplements, foods. Monthly tachycardia started 1/11, happened only at night, during sleep, or when waking, bouts of 5-15 hours. Changed to afib about a year ago, same pattern. Frequency increased over last 6 months, apparently with sensitivity to more triggers. Ablation 6/27/13 by Steven Hao.

As I recall, the Reacted 'Ferrocel' Iron Bisglycinate has the property of staying in the folds of the intestine till it is needed and is difficult if not impossible to OD on. In a pig study, they gave huge doses of this to 2 or 3 generations of pigs, with no negative consequences. This is in stark contrast to the normal iron sups.

Update: PAC's continued just a bit again every other day. I've now increased to a 1/2 grain and no PAC's. I'm assuming this will be ongoing until I get to the right dose.

Also, I can now lie on my left side for an extended period of time.

I saw Dr. Tchou and he was pleased - first he's heard my heart "normal." However, he's worried about the thyroid med and suggested that I keep TSH no lower than 2. He's concerned about how much med I may need to get to that point.

Theresa