Most are aware there is a connection so I thought I would bring you up to speed with what’s going on with my thyroid.
Rewind back to my second ablation back in early September 2018. Everything went well with no issues at all until April 2019 when I started to get a lot of short, fast runs of rapid, but regular heat beats. Started to try Magnesium Taurate and there was some reduction in these events but also had number of AF episodes which terminated quickly with Flecainide taken as a PiP. I had around 7 episodes in all and was put on the list for ablation no. 3.
I recalled being told back in 2006 that I had a marginally overactive thyroid and because of these developments, I thought it was worth checking it out. I was referred to an Endocrinologist and a few days ago I had a nuclear thyroid scan which indicated some nodules and enlargement of my thyroid gland. I had been prescribed a low dose of Carbimazole and blood tests first showed some improvement before returning to roughly where they were before all this started. To be totally honest, my thyroid was only marginally overactive and it was a very difficult decision to make regarding ongoing treatment.
However, an overactive thyroid is a known cause for some arrhythmias, including AF and long term use of Carbimazole is not encouraged, especially for folk with heart problems, so the Endocrinologist referred me to the Royal Marsden which is where I had the scan last week. Having had it confirmed that my thyroid was enlarged, today I returned to have Radioactive Iodine treatment so am now committed to a longterm treatment plan to bring my thyroid back in line. I am told it will be awhile before the thyroid will settle to some sort of normal level and there is a very good chance that it will become under active but this is much better for anyone with heart issues as it is easier and less dangerous to treat with thyroxine. Whatever, the deed is done so now it’s wait ‘n see time. If anyone else is in a similar situation and would like to know more, just give us a shout.
On a lighter note, because I will be exuding radioactivity thingies in my urine, saliva and pores, until Saturday I have to lead a celibate existence and master the art of peeing sitting down amongst a number of other precautionary constraints. My poor, long-suffering wife however became elated when I was told to maintain a distance of at least a metre and to sleep in separate rooms. The irony was I was told it was OK to have nooky, so the way home, I bought a masonry drill and I’m about to drill a “big” hole in the bedroom wall....😂
I had Graves since I was about 12 years old ( 50 years ago😳) had partial thyroid op then many years later had RAI, went very hypo within 6 weeks ! I wouldn't say being hypo is easier to treat, it can be extremely difficult especially if the standard Levo doesn't work, the alternatives T3 and NDT are virtually impossible to get on the NHS.
I have still ended up with AF, Wenckeback and mitral leak despite being hypo for 16 or so years ☹️
I have never had a problem being hypo, Levo works well for me so hopefully the same for you should you need it ☺️
I was hyper for a very long time so if that was the cause of my heart probs then that's probably why but who knows, doesn't mean it's the same for everyone.
I don't know if you've been over to thyroid uk forum but beware it's all doom and gloom over there and especially if you've had RAI, they are very anti RAI and don't believe anyone can be well on Levo !
When I was doing my “research” I did seek some help from that forum and to a degree, I was impressed with their apparent knowledge of the subject. However, I was not impressed in the way they openly and vigorously rubbish Endocrinologists and the medical profession. They seem to openly discourage folk from seeking professional help whereas here, we tend to do the opposite.
Again, as part of my research I have spoken to two EP’s and it’s possible that one of them might get my Endocrinologist to give a talk to our support group.
At the end of the day, as you rightly say we are all different and all you can do is weigh up the evidence and the follow your gut instinct. Maybe in a year or two I will know whether or not I got it right....🤞
I have to say I have seen some scarily bad Endos in my life, one told me I shouldn't be taking Levo at all and wanted me to come off it, despite me having no thyroid, errrrr I will die if I do that 🤔
I agree there is a lot of encouragement on that forum to disregard medical advice and self treat which does not sit right with me, they have no medical training yet they advise on medication and doses without knowing any history, worrying !
My sister was also hyper from about the same age yet she has no heart problems at all, I guess I just drew the short straw !
I understand, opinions are generally driven from experience. One or two of my friends on this forum often express similar views about how badly they have been served by their medics, so it’s not surprising they have a view. The difference is they do not use these experiences to openly criticise the medical profession. So far, I have been lucky. Since my AF and now my Thyroid, I have been very fortunate because I have had confidence in all the medics I have met so far. Just hope it stays that way!
in reply to
I think FJ you have been very lucky with your endo. A lot of them specialise in diabetes and know little if anything about an under active thyroid. I asked my Dr to refer me to an endo and she refused point blank.
Di
in reply to
I know this is something which is mentioned a lot on the Thyroid UK forum. In my case he immediately felt my throat and said there was a goitre which was confirmed by Marsden where I had the scan. I think this is why the treatment was recommended. During the consultation at the Marsden, I asked them to confirm that this was the best route forward for me. They said leaving it was not a good option, neither was remaining on Carbimazole and the only other option was surgery which they could not recommend.
All done now, no turning back and no means of reversing the treatment........🤞🤞🤞🤞🤞
in reply to
I think you will find over 50% of the people complaining have under active thyroids perhaps you had better come over there and we can slug it out! 🤣
Sorry for the delay, time zones! Carbimazole is one of the two commonly used drugs for overactive thyroid, probably has a different name in the States. and yes, multinodular goitre.
Ok thanks FJ ! Pesky things thyroids. Finally what treatment have you opted for ( sounds confused what the Dr advised at the R Marsden i.e. no treatment is good 🤔😂
But I understood that he didn't think any of the options were good but you have to opt for one? Don't worry about me I have brain fog sometimes - beta bolockers. ,😉 So you'll continue with Carbimazole?
So agree with you! I have a multi nodular thyroid ( had partial thyroidectomy 32 years ago and it grew back) so the thyroid Dr put me on levo to reduce the nodules. This over many years and I think it is responsible for my PAfib. I had to change Endocrinologist recently which was annoying. She spent the first 40 minutes rabbiting on about diabetes ( I don't have it) and how I could be pre diabetic one day ( who isn't at 64?! ) . I was there for a thyroid check ( which covered in 10 minutes. Waste of space)
No higgy, blood tests suggest hyper way before AF. My Mum had a thyroid op way back in 1953 ish when I was around 4...no idea wha they did, but massive scar around the neck. No medication that we are aware of. I’m no expert, but I’m on a low dose of Carbimazole for hyperthyroidism (overactive). I thought thyroxine was prescribed for hypothyroidism (underactive) 😳
Not always. I have a normally functioning thyroid but lots of slowly growing nodules. I take 100 levo as it is supposed make my thyroid "work less" but over the years it made my 💓 beat faster. Result Afib.
I too have an ear to ear scar ( Frankenstein haha) from removing my giant thyroid 30 years ago. In those days they left a little bit the size of a thumbnail. It grew back. Still taking Levo. Now Afib has joined the party. Hey ho. X
Love your sense of humour, flapjack! 😂 (And I’m sure it has a healing effect - for us all!)
This is all unfamiliar territory for me, but wishing you well. You’ve done your research and made the very best decision you can ... so now you can apply your wonderful positivity and look forward to getting back in balance and good health
Although I do share in your health issues I probably cannot add much to the conversation, except that - do you think whoever it is that decides those of us who suffer from the likes of AF always ensure we have a very robust sense of humour to deal with the daily and ongoing faeces that drop on us from a great height? Loved your post - very funny 🤣
Good luck flapjack. Now for my tale of woe! I had RAI August 1994 for hyperthyroid(Graves’ disease) in December of that year my thyroid function ‘crashed’. I gained a stone in weight in two weeks, muscle spasms and barely registered anything. It seem to come on suddenly. The first consultant was awful, by word of mouth I found another who was very good. It took at a year to lose the weight and two years to feel really good again. Yet left me needing other hormonal replacements
I found support at the time with BTF rather than thyroid uk. and went to there meetings They were more medically based I think. I always been aware that 27% of hyperthyroid patients go to develop AF. So here I am PAF since 2010.
Thanks for the input.....pleased to hear you are more stable now.
I suspect you are closer to a solution to Afib than I am. Make sure to let as many doctors (especially Researchers if you know any - or your doctors know any) about your situation. Below are 2 cut-and-pastes that might help you:
------------------------------------------
I have always thought we all have a similar problem happening within our bodies that is causing our afib problems. After 17 years of watching my afib come and go, and logging everything I eat, I am pretty sure our hearts are fine but we have a problem with a gland(s) or an organ(s):
1). The Sympathetic Nerve INCREASES the heart rate.
2). The Vagus Nerve DECREASES the heart rate.
3). The Adrenal Gland INCREASES the heart rate (with adrenaline), heightens
anxiety.
4). The Thyroid Gland both DECREASES and INCREASES the heart rate, and
heart strength.
5). The Hypothalamus Gland produces hormones directing other glands to do
stuff.
6). The Pancreas processes sugar, which cause other glands to do different
things.
7). To further complicate the situation, when one gland stops working, sometimes another gland will try to pick up the slack.
Plus - there are lots more glands in the body, plus don't forget the organs, which (some) also influence the heart rate, for example:
Medulla in Brain: Heart rate can be increased or decreased by impulses brought to
the SAN or AVN by nerves originating in the medulla oblongata of the brain.
The endocrine system of gland processing is complex – it’s a wonder it works at all.
For a neat picture/information on all the glands, check out this URL: (Ctrl and click):
Medications, chemicals, foods etc. can all cause our glands and organs to mis-fire. For me, sugar (and dehydration) are causing some gland(s) or organ(s) in my body to mis-fire, sending mixed signals to the heart - for example, telling the heart to beat fast and slow at the same time. This would explain why a healthy heart sometimes beats abnormally. It also explains why my heart afibs when I eat too much sugar, because the heart does NOT use sugar to contract (uses fatty acids) so obviously sugar/dehydration is causing something to misfire which in turn is directing the heart to afib. In our old age, I suspect a gland or organ is not working as it used to, causing afib or other heart palpitations. Unfortunately doctors and researchers don't know what it is (yet). In the meantime we will have to listen to our bodies VERY closely to see what is causing our problems and reduce or eliminate our afib by reducing what triggers it.
FYI - If you have a gland(s) that is not working correctly due to a nutritional deficiency, you can identify that with a Nutritional Response Tester and get it corrected, or partly corrected – which will greatly decrease your afib episodes and reduce the severity of afib episodes that do happen. I have done that myself and have been able to add years of living without meds, and a big improvement to the quality of life (for example can run up stairs with my mild afib and not have an oxygen problem – i.e. being lightheaded and dizzy).
You have to figure out your sugar tolerance yourself by eating enough sugar (might as well eat a Ben & Jerry's or 2 and enjoy the experiment) to get your heart afibbing. Then cut back a day or two with sugars until your heart beats normally again. Then eat less sugars than before and see what happens (afib usually starts 1-3 hours after consuming the sugars). Eventually you will eat sugars and not get afib. You can also do the reverse - start out with a little sugar and build up each day until your heart afibs. Remember to add up ALL sugars - in fruit, veggies, bread, everything you eat. That will be your tolerance level. Takes a few weeks of trial-and-error but I don't know of any other way to do it. If you do - let me know.
-----------------------------------------
After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer (this is why all doctors agree that afib gets worse as you get older). If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate (afternoon) exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??
I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas, Thyroid (sends signals to the heart to increase speed or strength of beat), Adrenal Gland (sends signals to increase heart rate), Sympathetic Nerve (increases heart rate) or Vagus Nerve (decreases heart rate), Hypothalamus Gland or others - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.
Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer
PS – there is a study backing up this data you can view at:
Saying "sugar" is not enough... Add to that HFCS (corn syrup) that is in more items than I can list, as well as sugars "naturally occurring" in food and after a while, we've all got some pretty "sweet" infusions... When we begin studying labels BEFORE buying and consuming , it becomes easy to understand the problem. A few brave countries have actually told the public that sugar = poison. Imagine that here in the US!
Altho I still crave a sugar fix from time to time, the time I am without sugary snacks is when my heart is the most normal. Having a bit of flu over a week and not being attracted to much food or snacks has left me nearly every day with a very nice, steady beat, as well as lower blood pressure, for which I have even stopped the Metoprolol (which was prescribed for elevated BP and afib).
As an aside, about 2 years ago I ran out of Naturethroid and 2 nights later I woke up to the first regular heartbeat I'd had during the entire 4 years I'd been on thyroid meds (starting with Synthroid which was when my afib started and went crazy). I've only restarted once during that time, to be a good boy scout, and two days later the afib returned so I quit the thy med completely. At nearly 73, I feel better than I have in a long time. I'm sure my VA doc doesn't care to hear this stuff, but I don't miss any opportunities to tell his nurse what I've been up to. These are not suggestions for anyone - only my own experience - which could change "in a heartbeat" to quote a phrase.
Sugar, per SE, is only the trigger (for a lot of us). It really doesn't affect the heart directly because the heart muscle doesn't use sugar to contract (uses fats, which we are all told to not eat). Here is what I found that does make the heart beat fast and slow:
------------------------------------
I have always thought we all have a similar problem happening within our bodies that is causing our afib problems. After 17 years of watching my afib come and go, and logging everything I eat, I am pretty sure our hearts are fine but we have a problem with a gland(s) or an organ(s):
1). The Sympathetic Nerve INCREASES the heart rate.
2). The Vagus Nerve DECREASES the heart rate.
3). The Adrenal Gland INCREASES the heart rate (with adrenaline), heightens
anxiety.
4). The Thyroid Gland both DECREASES and INCREASES the heart rate, and
heart strength.
5). The Hypothalamus Gland produces hormones directing other glands to do
stuff.
6). The Pancreas processes sugar, which cause other glands to do different
things.
7). To further complicate the situation, when one gland stops working, sometimes another gland will try to pick up the slack.
Plus - there are lots more glands in the body, plus don't forget the organs, which (some) also influence the heart rate, for example:
Medulla in Brain: Heart rate can be increased or decreased by impulses brought to
the SAN or AVN by nerves originating in the medulla oblongata of the brain.
The endocrine system of gland processing is complex – it’s a wonder it works at all.
For a neat picture/information on all the glands, check out this URL: (Ctrl and click):
Medications, chemicals, foods etc. can all cause our glands and organs to mis-fire. For me, sugar (and dehydration) are causing some gland(s) or organ(s) in my body to mis-fire, sending mixed signals to the heart - for example, telling the heart to beat fast and slow at the same time. This would explain why a healthy heart sometimes beats abnormally. It also explains why my heart afibs when I eat too much sugar, because the heart does NOT use sugar to contract (uses fatty acids) so obviously sugar/dehydration is causing something to misfire which in turn is directing the heart to afib. In our old age, I suspect a gland or organ is not working as it used to, causing afib or other heart palpitations. Unfortunately doctors and researchers don't know what it is (yet). In the meantime we will have to listen to our bodies VERY closely to see what is causing our problems and reduce or eliminate our afib by reducing what triggers it.
FYI - If you have a gland(s) that is not working correctly due to a nutritional deficiency, you can identify that with a Nutritional Response Tester and get it corrected, or partly corrected – which will greatly decrease your afib episodes and reduce the severity of afib episodes that do happen. I have done that myself and have been able to add years of living without meds, and a big improvement to the quality of life (for example can run up stairs with my mild afib and not have an oxygen problem – i.e. being lightheaded and dizzy).
in reply to
My, lots of detail there, thank you, will study in more detail when I’m fully awake.....
Sugarsit, I'd be interested to know what you eat for breakfast that doesn't contain any sugar whatsoever? I eat an organic muesli that I make myself, but guess you are saying that the dates and sultanas I use in it are not good? Nor the apple I have after lunch?
My home made granola also contains sugar (honey in my case) so, yes, I get sugar from my breakfast as well. I have found out that ALL sugars contribute to the total sugars you eat each day and that includes sugars in bananas (17 grams in each), apples (15-25 grams in each depending on size of apple), dates (15 grams each), etc. I use the following web address to know how much sugar is in things:
I'm not saying the sugars in everything you eat are "not good" as you say, but they all must be added up each day for you to know how much sugar you ingested that day. Once you know your sugar tolerance level, then all you have to do is keep your daily sugars below that threshold and your afib will not happen (easier said than done of course - I go over my limit every couple days). If your sugar threshold is up around 100 grams a day it will be quite easy to keep under that. But if it is under 60 grams a day (mine is 70) it is very hard to not eat that much every day. Doable, but hard. Hope that answers your question. Good Luck!
Thank you Rick. I'll continue with my muesli and still have my dates and sultanas, but perhaps try and cut down on the amount. I have two mugs of tea a day to which I add a spoon of sugar, will try and cut that out. It is hard not to have any and yesterday I had a weak moment and bought a pack of Maltesers - so rarely have sweets these days. I've been in constant AF for about 2 months so should make a big effort to stop sugar and see if my AF goes.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
AF and breathlessness
Pacemakers and Detection of AF 
Atrial Fibrillation and Hyperthyroidism
Living with the nightmare of AF
AF and breathlessness
