New & desperate for advice

Hi all, this might be long. Apologies in advance. First a little history.

Pulmonary embolism 2001 when on oral contraceptive
Pulmonary embolism 2005, 7 weeks after birth of son (was on heparin throughout pregnancy till 6 weeks post partum)
Pernicious anaemia diagnosed 2009
Graves Disease diagnosed 2013
No family history of heart disease

First, the PE's - Extensive gene testing, nothing found despite family history of thrombosis. Professor of haemotology believes my risk associated with pregnany/hormones. No warfarin for life necessary. Aspirin daily (not always taken - I forget)

Pernicious anaemia well controlled with weekly injections of cyanocobalamin.

On Methimazole for Graves for 3 years, starting dose 30mg a day, dose on remission, 0.5mg every 3 days. Remission lasted about 4 months, before my FT3 started rising. FT4 levels never rose. Always consistently on the low side of optimal for 4 years.

Started taking 2.5mg of carbimazole & 12.5mcg of synthroid in October. FT3 levels continued to rise. Reduced to 6.25mcg of synthroid in February.

With the Graves comes tachycardia and anxiety and it was particularly bad from December to February. Reported to endocrinologist who said "it'll be the T3, once that's lower, it'll resolve."

On 2nd March, whilst sitting reading, my heart went into a crazy slow/fast rhythm, subsequently diagnosed as arrhythmia afib. I went to the ER about an hour after it started, where they did an ECG, a tablet under my tongue, and a drip. My heart was back in normal rhythm after about 40 minutes, so the episode lasted 1 hour & 40 minutes in total.

I was put on bisoprolol 1.25mg a day and an appointment was made with a cardiologist.

I had an echo on 16th March & they found mild thickening of the septo-basal of the left ventricle (12mm). Left ventricle itself was 45mm. Everything else normal. The ECG report said poor R wave progression. My BP was 150/80, but I was very nervous. I always am in hospitals. My BP at home is generally normal. My FT3 levels are now back in range, as are my FT4 levels & TSH, confirmed by blood tests on 9 March.

Anyway, she prescribed me 40mg olmersartan per day (I'm taking 20mg, hate taking meds) & 20mg of xarelto, because my CHADS score was 2 (previous thrombosis), but said the anticoagulant would only be for 3 months.

My CHADS score will always be a 2, so I don't really get it? I'm not yet taking them as I don't like what I've learnt about them. I'm more open to taking warfarin as I've been on that in the past with few side effects, but for 3 months? She must be leaning towards this being a one off event? I had had a heavy weekend just before the arrhythmia. A little too much alcohol, not enough sleep, and dehydrated (It was Carnival here in Spain).

My BP now is averaging out at 105/60 (high of 110/68, low of 96/54). My heart rate is down to an average of 62bmp (high of 66, low of 52). I'm overweight 5'10"" & 200lbs (only since the Graves Disease diagnosis, previously was always normal weight, very fit and active, I exercised most days) and am addressing this now with diet, low carb eating, more fruit & veg. I'm exercising daily. Vigorous walking only for now, but it's hilly here, so quite a workout. Stopped the alcohol for now too. I wasn't a big drinker before, never drank during the week, but liked a few glasses of red wine at weekend's.

So, my questions are, how likely is this to be a one off event triggered by the heavy weekend, high T3 levels, sleep deprivation & dehydration? Time will tell I suppose.

What are your thoughts on me not taking the anticoagulant?

Can my lifestyle changes reverse the damage to my heart (thickening)?

What role has the Graves likely had on what's happened? Am I clutching at straws putting all this down to the Graves?

Thank you so much for reading. I'm in a bit of a state about all this. All of it has been a shock as I never expected heart or blood pressure problems. I'm literally the first in my family with either. We're a long lived bunch, and I'm worried I'm on the road to breaking with tradition.

Ps. I'm 51.

Thanks again, Karen x

Karen:

Yes indeed your Graves has everything to do with your AF episode. I had Graves disease a long time ago and I had my thyroid nuked by Radiation, it destroyed a lot of my thyroid but I still had some thyroid left. I did become hypo and had to take a thyroid med, I was good for a number of years then felt a little tried so i increased my thyroid meds and I went into a fast, flip flop of my heart which was diagnosed as AF.

I got a few episodes of AF a few times a year than i started getting more events, finding this board and reading about Magnesium was helpful for AF, I started to take it and my episodes lessened. I have noticed that if my thyroid is too low or high I have more AF episodes, so keep your thyroid as close to normal as possible. The docs wanted me to take Coumadin, which I did, but after a few weeks on it I started having problems, bloodshot eyes, blood pooling under my fingers so I was taken off of it. I take aspirin now. With your history of Pulmonary Embolism, that is a different story, so you may need a blood thinner.

Liz

Hi Karen,

Glad you found us, sorry you had to.

Alcohol can be a trigger. It is known as "holiday heart syndrom." The GP who lived across the street says it was most of the afib he saw.

Alcohol & stress can deplete magnesium, and low mag is an issue for many afibbers (including me). Serum blood tests for mag are fairly worthless. Body works very hard to keep serum levels in range. So low serum is low, but normal may be low intracellular. If they can get an RBC mag test in the UK, then try that and aim for 6-6.5 md/dL (2.46-2.67 mmol/L if I did the conversion right & assuming mmol/L are the units in the UK).

I'm out of my league on the thyroid, but I'm sure Liz is correct, it can have a big impact. The combination of that plus alcohol plus stress may be a bid deal.

Low carb will certainly help you, but go easy on the fruit, the fructose goes straight to the liver (as does ethanol in alcohol). I'd avoid alcohol for the time being, at least until you figure out how to keep yourself in rhythm.

The betablocker won't keep you in rhythm, only slow the rate if you go out.

George

Thank you much Liz and George for the support. I'm currently see-sawing between positivity that it was a one off event and I can change my lifestyle to prevent a recurrence, and doom & gloom, I'm going to die any second, pessimism. The paranoia about every little twinge, increase in HR, I could happily live without too.

I have magnesium glycinate that I should take, but always forget to, as part of a vitamin D protocol. I was diagnosed as vitamin D deficient 2 years ago. I'll start up on that straightaway.

Thanks again for the support. So far, so good with the old ticker. An average resting HR of 58, high of 92 (2 minutes after fairly vigorous exercise, dropping back to normal within 5 minutes. No palpitations or abnormal rhythm felt.

Onwards & upwards,

Karen x

I fixed my AF by quickly going the ablation route which allowed me to continue enjoying a few glasses of red on the weekend.

My business partner fixed his AF by quitting alcohol 2 years ago and hasn't had another episode. If I had more control I probably could take his lead and eradicate my ectopic beats and short tachy runs.

I expect a lot of the AF community would benefit hugely from that life style change approach.

Hi Mike, I always believed that if I was told I could never drink alcohol again for the sake of my health, that it wouldn't be a big deal. I believed wrong. It feels like a big deal. My husband and I are very social people. We meet friends in town a lot, eat out a lot, go to events a lot. Whilst we definitely only usually drink moderately, I feel slightly bereft at the thought of never being able to have a glass of champagne, a couple of glasses of red, or a cheeky G&T again.

I ended up back in the Emergency Room again yesterday. A little too much vigorous exercise and I went into what the Dr confirmed as sinus tachycardia, which lasted just over an hour. Very frightening, but thankfully no AFib. Strangely, I exercised at a lower intensity yesterday than I had the previous 3 days, but still the tachycardia kicked off. I just knew whilst I was exercising that the increased HR felt different to a normal increased HR. Not sure if that makes sense, but it definitely felt different.

I'm now frightened to exercise. This is a nightmare. I'm also now experiencing occasional fleeting soreness in the heart area, almost like a very mild spasm. Is this because of the strain my heart's been under? The Dr seemed unconcerned.

*Sighs a big sigh

Karen

I'm guessing yesterday was Tuesday. I'm in Australia and assume you are in the states.

I find (not pointing the bone) that my ticker is much more 'restless' in a holiday heart kind of way on the first two working days of the week. That's no coincidence.

Alchohol inflames heart tissue or at least the bi product does. Even small amounts of alchohol can do it in some folks.

Alchohol increases heart rate and any caffeine only adds to that. In short after a weekend of even slight indulgence some people are in a highly receptive state to welcome AF. Exercise can be the tipping point. I know from experience more than once.

I remain informed but not always acting on that knowledge. We have some of the worlds best red wine here

I'm guessing "cheeky" G&T drinkers live in England!

If your AF triggers are adrenerigic (which it sounds like they are given the exercise reference), then alcohol is very likely to be another upsetting factor. Mike is correct in that ethanol itself actually isn't a toxin, rather its first metabolite is. Our bodies quickly cleave ethanol into acetylaldehyde via the alcohol dehydrogenase enzyme. Acetylaldehyde is chemically very similar to formaldehyde (embalming fluid!). Acetylaldehyde then further breaks down to acetic acid (vinegar), which probably doesn't help the body's need for alkalinity. So all of this "metabolic mayhem" that follows in the hours to day after (over)indulging in alcohol consumption is the source of inflammation that enhances the substrate for atrial arrhythmia such as ST, flutter or AF.

My experience with the vagal form of AF is that it doesn't really care so much about alcohol consumption, with the ETCHED IN STONE caveat of moderation.

I suppose in either case one could attempt to offset the debilitating effects of ethanol consumption with a careful replenishment of fluids and electrolytes. A Gatorade for a cocktail, perhaps? Maybe an extra bolus of magnesium prior to an evening on the town? I don't know for certain, and I don't want to attempt to pen the "AF Patient's Guide to Drinking" lest we run afoul of healthy living and common sense.

Hi Mike & Wolfpack. I've had no alcohol for just under 2 weeks, so I can rule that out as a cause of Wednesday's tachycardia incident. I don't drink coffee either, and tea, only 1 or 2 cups a day. The Dr who looked at my ecg yesterday said it was perfect apart from the rapidity of the beat. She took a long hard look at it too, and kept telling me not to worry so much. Easier said than done.

I'm off alcohol for the next couple of months at least, and then I'll see how I feel. I see my cardiologist again in early June, so I'll raise it with her then. She never mentioned stopping drinking to me. She just told me to "keep it in moderation". The fright I've had has put me off it though *Sobs*

Oh, and I'm English, but live in Spain. Heavy drinking really isn't done here, but light social drinking is the absolute norm, and the riojas are just beautiful.

Thanks for the support guys. Much appreciated,

Karen x

Karen - It may help to keep in mind that alcohol is well-known to have detrimental affects for afibbers. It depletes magnesium and is known to be excitotoxic to cells. This obviously become important when the cell is a heart cell and the majority of afibbers are found to be magnesium deficient... along with other electrolyte imbalances.
The EPs recommend avoiding alcohol.

My first AF event was triggered by consuming several glasses of wine (3) along with salty snacks. A recipe for disaster for those prone to Afib. At the time, I also was involved in a lot of weekend partying but soon learned that I'd have to forego the alcohol and just learn to have fun without it. It is not that difficult considering the trade-off. My social life didn't suffer one bit by my eliminating alcohol.

You can consider using seltzer water with lemon or lime but forgo sports drinks that contain a wide variety of very unhealthy ingredients such as sugar, artificial colorings, brominated vegetable oils, and so on. An organic version of Low Sodium V8 or similar veggie drink is very useful to add potassium which most afibbers need along with magnesium and makes a nice drink to use as a cocktail substitute... Bloody Mary w/o alcohol.

Also, you can do a Google search online for Graves Disease and avoiding Gluten. There is an abundance of reports on this connection.

Jackie

Perhaps Gallic cardiology differs from our more Puritanical, American form!

It really sounds like you could benefit from careful adherence to our supplementation strategy. Specifically the magnesium, but also taurine and potassium. The former two can be experimented with in dosage up to bowel tolerance. The latter not so much as it can cause other arrhythmias. Now would be an excellent time to start as we in the northern hemisphere proceed into warmer months where electrolyte balance becomes even more challenging with increased outdoor activity and perspiration.

Thanks so much Jackie & Wolfpack,

I've lost so much of what made me, me because of the Graves Disease. I played sports, loved running, had energy, was very slim, always busy, lovely hair. Graves took all that away from me, and more. Much more that's just hard to express. It's life changing and not for the better. I'm just not the person I was. I suppose I'm just not emotionally ready to lose another part of me, the part that enjoys a few drinks with friends at weekends, who can be the life & soul of the party.

It might sound pathetic, but when I'm feeling awful, and my thyroid levels are out of whack, it's the thought of seeing friends, sharing a bottle of wine, and laughing that gets me through. I can't face losing that part of me. Not yet. I've lost too much.

At the same time, I'm terrified, and I want to live a lot longer. My youngest is only 11. I have work to do with him and I want to see all 3 of my children happily settled with their own families before I pop my clogs.

It's all new and I feel I'm living a nightmare, so pardon the self pity. It's not usually my thing.

The magnesium glycinate is being taken. The Pure Encapsulations brand which is supposedly very good, and I'm off to read the strategy. Thanks again for taking the time to help me,

Karen

Karen:

I don't understand your comment that Graves disease took away part of your life and your love of sports etc.. I had Graves disease a long time ago, but had my thyroid zapped. Afterwards I played golf, did a lot of hard work in my big garden, berries and fruit trees, I canned and froze my produce, that is a lot of work. I take a thyroid supplement and I am fine with it, I don't feel that a part of my life has been taken away, I never cared for alcohol so I didn't have any problems with that aspect. I still get episodes of AF, I take some magnesium, an aspirin and Propafenone and wait it out. I realize that there are people that have worst health problems than I do. We do the best we can, I realize that life isn't always a bed of roses.

Liz

I'm actually from the UK and whilst I believe I am reasonably modest in my alchohol intake I think once one develops a sensitivity to it then even small amounts can upset the apple cart. I don't drink much coffee but I do enjoy a few cups of tea every day which may sometimes be a trigger. I tend to go herbal late afternoon.

My hypothesis is that over indulgence when we were younger may have caused some damage. One of my old chums who is a doctor also succumbed to AF. He was fixed by Sabina Ernst in London. He now keeps a healthy distance from red wine in particular.

Hi Liz, and thank you for your kind message. In answer to your question, I'd say not everyone with Graves Disease is the same, and there is a wide spectrum from very mild affects to being life ending in others. Some are severely affected, others less so. Some go into remission. Others never achieve that. I've been in thyroid storm. That's about as severe as it gets.

I'm contraindicated for Radioactive Iodine treatment that'd "zap" my thyroid as I also have Thyroid Eye Disease caused by the Graves. So far I've avoided the surgical option, on medical advice, because of the additional risk resulting from my PE history. As such, my options realistically lie with medication. The dosing is so difficult with anti-thyroid medication, and I've veered between hypo and hyper several times. This wreaks havoc on a body.

I've gained weight, struggled terribly with energy levels & weakness, so much so that I've been unable to climb a flight of stairs at times and have effectively been confined to bed for weeks at a time. I have had to give up running because of tachycardia which is a first sign my dosage of thyroid medications need looking at, lost more than half of my hair, had eye bulging, vertigo that lasted 7 months, double vision of the same duration. My thyroid is massive & I have dozens of nodules that affect my ability to swallow easily, so I sometimes regurgitate food, sometimes in public, which is awful. I have to have quarterly scans to monitor the nodules for signs of cancer. It's affected my confidence, and all my relationships. In short, I am not the same person I was.

When I'm well I live my life to the fullest. When I'm not, life is extremely difficult but for sure my life is less full than it was. The only reason I'm still able to work is because my husband and I have our own business, so I work when I can, and don't when I can't.

Have I just accepted all this? No! My diet is excellent, I take recommended supplements and follow protocols to try to help myself. I generally don't feel sorry for myself, appreciate that there are people far worse off than I am, and that I'm not entitled to happiness and joy 24/7, or to live in a bed of roses.

I'm really pleased for you that Graves hasn't impacted your life quite as negatively as it's affected mine, but just because you've not been terribly affected doesn't mean other people aren't. It can ruin lives.

I'm not sure minimising the devastation an illness can have on others, just because it hasn't devastated yours, is particularly helpful, especially when it's obvious that someone is feeling low and vulnerable.

However, I wish you well. Have a great day.

Interesting hypothesis Mike. I certainly can't deny I overindulged on occasion in my youth, but I also had several years of not drinking at all - during 3 pregnancies, and at least 4 years of breastfeeding after.

Drinking to excess in the UK is a national pastime, so I'd expect AFib rates to rocket over there.

Mike - some people are sensitive to sulfites in wine and also to the accumulations of pesticides in wine that is not organic. But, typically, the major problem is the fact that alcohol is excitotoxic to heart cells and it is apparent that in those with arrhythmia, it tends to be a reliable trigger. This neurotoxicity of alcohol on cells extends to brain cells as well. One might say afibbers are getting an advance warning whereas those with brain damage may not know until it's far too late...thus, we often say Afib is the Canary in our body's Coal Mine... giving a warning that something is amiss in the body.

The excitotoxicity isn't just limited to alcohol as the same can happen with monosodium glutamate (MSG) in foods,
Aspartame - the synthetic sugar, hydrolyzed proteins, soy protein isolates, sodium caseinate and any substance that stimulates the glutamate receptors in heart cells or brain cells. This is why it's so important for those with Afib to eliminate all the potentials and "eat clean" and often it is important to avoid alcohol as well as a first preventive step. Core nutritional repletion follows as a close second step.

Jackie

karen:

I don't understand why you cannot either get your thyroid zapped or else have surgery to remove most of your thyroid. it is very hard on your body, heart to have an over active thyroid. I don't get why having eye problems because of your Graves disease stops you from having your thyroid gland taken care of.

"Although Graves' disease and Graves' eye disease both stem from the immune system’s attack on healthy tissue, one disease does not directly cause the other. That’s why treatment of the thyroid gland, while important, does not improve the eye disease. The two diseases run their separate courses and do not necessarily occur at the same time"

I am sorry you are having such a tough time, i did try meds at first for my overactive thyroid, didn't work. If your thyroid is massive you need to ablate it. I don't know if you are hypo or hyper right now but either one is devastating on your body.

Liz

Hi Liz, as you know, Graves is an autoimmune disease which attacks the thyroid. As such, the thyroid is the victim of the disease, not the cause of it.

All current research has concluded that RAI is contraindicated in anyone who has active TED or has had TED, as the nuking of the gland causes an upsurge in TSI antibodies which will exacerbate or begin the TED process. It is the TSI levels that confirm the diagnosis of Graves rather than general hyperthyroidism, and it is TSI levels that indicate remission. My TED symptoms started about 6 months after my Graves diagnosis, and settled within 18 months.

Since I came out of remission in the autumn, (indicated by rising TSI numbers) my TED has flared up again, but only mildly so far. A sign, hopefully that my antibodies are lowering. RAI in every instance dramatically raises TSI antibodies and in good endocrinology departments is not used as therapy for anyone with a history of TED.

With regard to surgery, for me it is an option. I have a surgeon and anaesthetist who have agreed to operate, but it's a last resort operation because of my history of pulmonary embolism. I'll know, in conjunction with my endocrinologist, when I've reached that point. It's possible with the AFib diagnosis, that it's now. I'll discuss it at my next appointment.

Right now, I'm euthyroid, which is good, but for several months my FT3 levels were high, and my FT4 levels were low. Fairly unusual & difficult to treat, as ATD's lower both FT3 & FT4, so I'm on a combination of ATD's & a low dose T4 medication.

Regards, Karen