new to group - ?s re afib meds/supps

Hi, I was diagnosed with paroxysmal atrial fib (or lone afib) Jan 19th, & it has taken me a while to learn how to get on here & ask some questions. My thyroid was surgically totally removed in 2005 & I had to start thyroid replacement. In 2010 I started natural dessicated thyroid (NDT) & have experimented with that process for years. I am now 68 years old & though I have been on relatively the same dose for about the last 8 years. I read an article by Dr. Brownstein saying after age 65, one has to be very careful about possibly getting too much thyroid med & becoming hyper, which of course increases risk of afib and stroke. I will admit my labs of FT3 were high & my TSH was 0. The drs found a-fib on EKG & then on echo afib and atrial flutter. My pumps & valves all looked good though. I do exercise regularly, am trim, eat well & usually have good BP, tho pulses run on the high side. Eventually, I followed their advice & got off of my NDT med & started synthetic Levoxyl bec it was believed that my afib was primarily due to me being hyperthyroid. I also started a beta blocker (carvedilol) of 12.5 mg twice a day & aspirin 81 mg daily. I read on this site about magnesium (which I already knew a lot about from the Mag Advocacy Group) & took 500 mg, taurine & hawthorne extract (the latter 2 from Dr. Brownstein's article as well - a thyroid dr who himself developed afib unexpectedly). I upped my mag to 575 mg total & mixed back in some mag glycinate to my Jigsaw brand of mag malate to = 575 mg total (I weigh 110, so that is even a little more than 5x my body weight as advocated to do by mag group). I purchased taurine & hawthorne extract from iHerb & wanted to stop the beta blocker & aspirin & take these other supps, but my cardiologist said she could not recommend that. I was prepared to take 1000 mg taurine twice a day. and hawthorne extract 600 mg twice a day, awa CoQ10 (ubiquinol form) 100 mg daily. It took a while for my heart to settle down bec at first I would not do exactly what the dr wanted bec for one, they wanted me to completely stop thyroid med (& I have NO thyroid) & two, they put me on a beta blocker which gave me multiple side effects & only offered another pill for the reflux the 1st pill was causing, rather than giving me another beta blocker option to try. As I had 4 afib episodes in 1 month, I asked my endocrinologist for the name of another beta blocker to ask the cardiologist for & he suggested carvedilol which has worked well & I succumbed also to stopping my NDT & starting synthetic thyroid med. I have been on the new thyroid med for 1 month now & am getting labs checked tomorrow. I will say that I have been increasingly tired & I think my BPs have been too low, even dropping into the double digits top & bottom several times in the last couple months. Is this from too low a thyroid level now or from their beta blockers which I may not need now that I have changed & also lowered thyroid med. I bought a lot of taurine & hawthorne extract & am too scared to change anything at the moment as things have finally settled down heartwise since going on synthetic thyroid med & also on carvedilol 25 mg a day since 2/24/18. It does take at least a month for effects to be noticed from a thyroid med change & I will be finding that out soon. One thing that lingers in my mind is: how do I know that taking taurine, hawthorne extract & magnesium will all do the trick & not have the possible side effects on my overall system the way I read so much about prescription drug side effects do? The dr will not stand behind me in taking these supps as they are not trained in this route. The blood thinners also recommended (Plavix./Eliquis) also scare me - I feel what if I don't really have an afib problem anymore bec it was all just due to too much thyroid med & now that I have reduced, perhaps I will never have afib again & do I really need to be on beta blockers & blood thinners for life?!!! Please advise in use of these supps, the possible dangers for me to stop the dr's recommendations & start these supps instead. Getting my thyroid levels soon will help in determining what to do also. Whew, I am sleep & cannot concentrate anymore. Thanks for any help & advice you can provide as the drs of course are not in my corner with not just following their standard routes.

Madeline:

My AF journey started with taking too much synthroid, I became hyper and went into AF, the first years I only got AF a few times a year. I didn't know about magnesium then which I have taken now these last years it has helped, but after having AF episodes off an on for about 18 years I am getting them a little more frequently now. The supplements you are taking are good, there is another that you might be interested in "CircuFlow" It is made by Dr. Brownstein, he is my doctor. This supplement has Hawthorn Berry, Horsetail, Chromium, Selenium, vit. C, Taurine and Arginine. I am vagal, which means I get my episodes at night while at rest or sleeping, I don't think Hawthorn berry helps me, if you get your episodes in the daytime then it could help you.

The beta blocker helped calm your heart when you were hyper but why take it now if you are no longer hyper. How long did your episodes of AF last? By taking those supplements and getting your thyroid levels in a good place you may not have anymore episodes of AF. Where did you read the articles by Dr. B, do you live in Michigan by chance? He believes in Hawthorne Berry but he got his episode when working out, he is the opposite of me, Hawthorne berry helped, he said he took it and his AF went away and he went back to exercising.

I do take an anti-arrhythmic drug, one tab. at night before bed, I take aspirin also, I couldn't take blood thinners in the past, my doctor wants me to take it now but I just cannot as yet until there is an antibody to these new blood thinners. Anyway, hopefully you will be ok once your thyroid level is in a good place.

Liz

Hi Madeline,

You told us all about your thyroid, meds, and so forth, but not about your afib. Are you in afib all the time (persistent) or does it come and go (paroxysmal)? If it's paroxysmal, how often do the episodes occur? How long do they last? The answers to those questions will make a huge difference in whether beta blockers and anticoagulants are really necessary.

Hi Liz,

Let's see if I can remember all you wrote as I don't see it now! I have NOT started hawthorne extract or taurine yet as the dr. has only had me on the beta blockers about a month & she did not want me to take the supps, so I decided I needed to stay stable for a while before experimenting with getting off the beta b. & getting on the 2 supps. I have only had Afib between Jan 19th & Feb 15th documented this yr (4 episodes), but the last 2 were most likely IMHO due to me taking myself off the metoprolol bec it did not agree w/me & they did not offer an alternative BB until I later came up with one to ask for. I wore a cardiac event monitor for 38 days. I have heard of Dr. Brownstein for yrs thru my thyroid support groups & I know of his book on iodine. A naturopath sent me an article Dr. Brownstein wrote about his recent Afib he had while swimming & what he did. Like me, he was shocked that he had it as he considered himself fit & fine! Once I changed my thyroid med & got on the beta blocker w/no side effects (wh has only been 4 1/2 wks), I have had no more episodes. NDT thyroid med is hard to take bec it has direct T3 which can be hard to tolerate if all circumstances are not right (such as healthy adrenal function). It will cause hyper symptoms.

Does anyone in the group know why it is better to take hawthorne & taurine than the prescribed beta blockers? How do I know they don't come w/their own side effects & my ins pays for the beta blocker.

I am considering experimenting in a month or so by titrating myself off the BBs & starting the hawthorne & taurine & seeing how it goes. I am not 100% sure my Afib was due to my thyroid meds, but I do suspect it 99%. It did settle down the minute I switched my thyroid med. It takes time to figure out a new thyroid med & dose bec this is synthetic & a totally different type of thyroid med than natural dessicated which has direct T3 in it, the most active & life-giving substance for the thyroid. With synthetic we are expected to be able to convert the T4 (which is all synthetic gives) into T3, but we do not get any direct T3. I imagine I might end up needing to also add some T3 to this synthetic (like I did yrs ago before I started only taking all NDT).

I can't remember what else you said, as I cannot see your post while replying (frown emoji)

Carey,

My 1st sentence told you I had paroxysmal Afib. All the rest of your ?s were also answered in my note if you would re-read it. 4 episodes in one month's time of monitoring. I gave the whole story as I was hoping to give a full picture & get some answers to these specifics. I detailed quite a bit which should give enough information for a detailed reply. One cannot advise properly without a full picture of all circumstances pertinent & I told you history & all that happened in the few months of my being discovered to have Afib & the episodes recorded on cardiac event monitor.

Medeline

I said that Dr. Brownstein has told me that he recommends taking CircuFlow for AF, it has many of the things you said you take, he believes quite highly in Hawthorne Berry, it worked for him. If you have a problem converting T4 to T3 include some iodine like Iodoral it contains Iodine/Potassium Iodide which (12.5mg.), Dr. B. recommended it for me. I did very well on it for a number of years, I did stop it a while back I might restart it. There have been some posters on here that have taken Iodine for their AF, and said it helped.

Liz

Quote
Madeline
Carey,

My 1st sentence told you I had paroxysmal Afib. All the rest of your ?s were also answered in my note if you would re-read it. 4 episodes in one month's time of monitoring. I gave the whole story as I was hoping to give a full picture & get some answers to these specifics. I detailed quite a bit which should give enough information for a detailed reply. One cannot advise properly without a full picture of all circumstances pertinent & I told you history & all that happened in the few months of my being discovered to have Afib & the episodes recorded on cardiac event monitor.

Madeline, I wasn't criticizing you or your post. My only intention is to try and help you.

Yes, your full history is important but I found it difficult to understand your afib from the huge amount of complex information you provided. Could you give me a brief answer to my questions about frequency and duration of your episodes?

Hey, yes i take iodoral & have for yrs. I know quite a bit about all that as I have been thyroidless for 13 yrs now & have read much & been helped a lot. I do believe I convert FT4 to FT3 pretty ok, but getting direct T3 is another thing in addition to converted T3. I already take selenium & a number of things. The thyroid groups call your med of Synthroid - Sincrap. have you ever been on STTM (stop the thyroid madness) site? Wonder why Dr. B did not mention Circuflo in his article, he just said hawthorne extract, but like I said I take a bunch of stuff already that is in Circuflo.

It would help if someone could tell me how we see a post while replying to its specifics. I do not understand why it disappears. makes it hard to have an intelligent reply.

I got no advice other than yours to my detailed history of past & present events.

Thanks. I am swamped lately by a huge medical trial my husband is going thru so typing very fast w/brief replies & don't have much time as I am full time caretaker to him & my afib that just happened last month has taken a back seat as it is all calm now & I just wanted info on how to keep going forward with it. The only other reply I got was from someone asking a bunch of ?s that answers to were all in my inital post. I know many ppl don't really want to be specific or read much - just want bullet points & replies, but that is not scientific.

Hello Madeline - glad you found us and thanks for your detailed description of your story. I'm sorry you are in such a stressful situation but glad your afib hasn't become a total burden. The more calm you can become by various means, the better... obviously.

While I have not had my thyroid removed, I have had significant problems with undiagnosed thyroid issues (initially) and then being treated ineffectively with Synthroid for many years while the condition deteriorated...so I can appreciate your comments and the reference to Stop the Thyroid Madness... as I've been researching thyroid issues for decades... and then 22 years ago, Afib entered my life.

I posted a reply to anneH on the topic of thyroid labs which gives links to several functional medicine practitioners who are experts in thyroid dysfunction. You may find something useful there when you have time.

As for your reply to posts... when you hit 'reply' and have the empty box to type in your message, you can see the previous post history by using your mouse wheel to 'go back up the page' or use the mouse, arrow pointer to drag up the slider in the far RH margin.. little vertical bar that is very faint to see...that will pull down previous text and then you can go back down to type in the message page.

Back to the thyroid... There is good support for using low-dosing of iodine and other supportive nutrients that include functional minerals needed for thyroid function including not only iodine but zinc, selenium, copper, manganese, vitamin A, Riboflavin and several herbals. However, addressing supplementation in case of thyroidectomy should definitely be supervised by a knowledgeable physician.

Jackie

I was first prescribed norfenon for afib about 4 or 5 years ago. My symptoms were the sensation of skipping a beat once every three beats, mostly at night. The doctor (cardiologist) prescribed norfenon which I took for about 6 months, and which regulated my heart. About this time I heard about hawthorn berries, and discovered that I had a hawthorn berry tree (Mexico) in my back yard. I started eating the berries and cutting back on the norfenon until I quit the norfenon altogether. Eventually, I replaced the fresh fruit with GNC Hawthorn Extract (150 mg x 2 times daily). This worked well for about two years, when the symptoms returned. I tried increasing dosage and lowering it, but to no avail. About 2 months ago I went back to eating the raw fruit off our tree, but now the fresh fruit had been attacked by worms. In the USA I bought and have been taking Hawthorn Leaf and Flower tea from Frontier CO-OP (one teaspoon) 2 times per day, and it seems to be working well for the last month. However, I am now beginning to recognize that as I grow older (I am 75), I can only expect the symptoms to come back. I don't look forward to having to return to a cardiologist and explaining hawthorn berries. I am very happy to be a new member of Afibber's Forum. Any comments would be appreciated. Thank you for accepting me into the Forum.

After reading reports on afib, I am beginning to realize that my understanding of exactly what the condition is might be faulty? Does the afib condition necessarily mean a high heart rate? My heart rate is generally pretty low 55 - 65 beats per minute. I am taking no medications, and my heart irregularities consist mostly of the sensation of skipping a beat every 3 - 6 beats. When my GNC Hawthorn Extract treatment seemed to be failing, my heart rate even dropped down to 47 beats per minute at times. My cardiologist in Mexico never really diagnosed me as being Afib - said my condition was not life threatening and gave me Norfenon. His report in July 2013 does not mention afib, rather Mitral insufficiency. I have not seen a cardiologist in the USA. Maybe I am in the wrong forum? Hawthorn berries - leaves - flowers helps alot.