I am in persistent AF now, it is mild and doesn't often bother me, much better than the hideous crashing out of nowhere PAF used to be. But my pulse is too high. I'm on 2.5 Mebivolol and Apixaban. My pulse runs in the 90's and low 100's if I do anything, and is high 80's or 90's at rest. It used to be in the 70's at rest. I don't want more beta blocker because I'm exhausted enough as it is.
For my hypothyroidism I'm on 125mcg Levothyroxine. I can't go higher because it makes me feel worse. It's never made me feel any better and the steady progression is worse over time. I have a defective Dio2 gene inherited from 1 parent meaning I can't convert the Levothyroxine (inert storage hormone) into the active T3 hormone I need in every cell. NHS is bloody useless in such cases.
I'm going to have to self-treat if I ever want any ability to do anything again. My question is:
Has anyone else with Afib had hypothyroidism and HIGH heart rate, pouring with sweat at the same time? If so, what did you do about it?
These 2 things are considered signs of HYPERthryoidism, but I've been testing and monitoring my TSH, FT3 and FT4 for years and I've never even come close. My FT3 is always on the low side and doesn't respond to rises in medication.
Written by
FancyPants54
To view profiles and participate in discussions please or .
Yes, I have AF and hypothyroidism that was caused by my taking the drug Amiodarone. I just take 75mg of Levothyroxine, doing that gave me my life back, although I do still get tired days. I can't cope with hot weather any more - it totally drains me.
Yes I do Jean. Levo has never helped me sadly. I am now at the point where just a short walk around the garden or doing housework gives me terrible leg and foot pain and I need to sit down for the rest of the day.
I am sure T3 will help me, but I'll have to buy it. However the high heart rate worries me as a patient on T3 would usually use high heart rate as an indicator of too much T3 and reduce the dose. I'm starting high.
Yes, I could write the book. I was on a small amount of T3 when the Afib started that wouldn't resolve. Of course the GP and then the cardiologist freaked out, as did the A&E doctor I saw for high pulse not long after it had started. And they scared me off it. I had the test results from that small amount though. My T3 level had actually dropped from before on Levo alone. There was no way the T3 caused the Afib, but they know nothing about thyroid so I panicked and stopped it and pushed my Levo back up to where it was before and I've felt unwell again ever since.
I've just looked. I have some in date NDT, might be worth trying that first. Not sure. We should not be left alone with thyroid problems, but we are. One size fails to fit all, but that's all we have. I'm very bitter about it, as you can probably tell. I took the gene test results and report to my GP, he looked at it for a few moments and said "I don't understand that" and that was that!
It's dreadful the way people with thyroid problems are just prescribed Levo and expected to get on with it! Yes, I think I would want to try the NDT, but if you have some you've obviously already been on it without success?
GP's today have none of the skills the old ones used to have and I think the older we get the less anyone cares about how we feel, though they generally make out that they do!
Reading these posts I am wondering if hypothyroidism could be at the bottom of all the ill health I have been experiencing over the past few years. My sister had her thyroid gland irradiated years ago and from then on until she died earlier this year suffered on going health problems. I noticed in my medical notes three years ago that my cardiologist stated that he thought I could be 'border hypothyroidism ' he then gave up on my PAF and said that I would probably end up on amiodarone when it became permanent. Like you Jean I am now in the forgotten league! I am getting more and more difficulty in walking with suffering pain and swelling in my legs and feet and also lower back and hobble and stagger around the house and garden. The AF I can put up with but the immobility is driving me round the bend! We are still isolating and that dosent help either. Sorry for the misery but just had to unburden. Hope you are managing alright.
reinaway , my feet have gone up a whole size since this got bad. I was already a size 8. This has not made anything easier. I suffer horrible foot pain now and exhausted legs all the time. They feel so heavy too. It's hard to pick them up and move them. I have to be on my feet at work, it's really difficult. This is almost certainly a symptom of hypothyroidism for me.
If I try to do anything, hoovering, any kind of gardening, bending down, after a very short time I get a weird kind of pain in my back, it's lower back and seems to well up. It's totally encompassing and I have to sit down. It's not muscular. I think this is also a symptom for me. Have you ever seen the list of symptoms for hypothyroidism? I'll get you a link. If you tick off many of them, phone your surgery and ask for a FULL thyroid panel to be drawn because you have family history and you are feeling exhausted. Then get a paper copy of the results and reference ranges. Never accept either the receptionist or GP saying "your results are fine". The reference ranges are too wide. We can't possibly feel the same at the bottom as we would at the top. Your results need to be 50% or over through the ranges for T4 and T3 unless you are on medication for it when they need to be in the upper quarter. My last T3 result was just 15% through the range. The time before it was below 8%. These are the worst they have ever been and my GP said I as "fine" because they are in the range.
Yes, I'm managing fine thank you. Have had my Flecainide dose upped and I must admit it has given me more energy. Last week I actually did a very steep coastal walk, just took it slowly and was fine. I know that even normal people can get puffed going up hills.
If your cardiologist said you were borderline hypothyroid, I would tell your GP this and ask for a test. I was so very weary before I was given medication for my thyroid and was blaming my AF. When given results for this always ask for the numbers.
Never worry about off loading to me anything that's bothering you. Sometimes when we speak out, someone may answer with a solution that we hadn't thought of.
Thank you Jean I will certainly mention it although if he took time to read my notes he would have seen it. I will jog his mind and see if I can get some results this time! Anne xx
I was on some NDT a number of years ago and it worked, but I can't recall why I stopped it. I hadn't been diagnosed as hypothyroid then, again I was self-treating, and because of perimenopause I think everything was just up in the air. I can remember striding up a really steep hill to the shops every day in the heat in Northern Tenerife though, whist taking it, and having a lovely and active holiday.
This bottle I currently have was prescribed by a so-called hormone specialist alongside HRT that didn't work for me either and she told me to stop the Levo I was on by that point and just take 1/2 grain of the NDT daily, no more. Well that did a number on me too! It was the equivalent of a massive dose decrease and caused so much anxiety it was unbelievable. So I stopped that too. But that wasn't the medication it was the silly instructions. Thankfully I now have a proper HRT specialist who has helped a lot, but I still have this thyroid problem. Over a year ago now she looked at my results and said "I hope your GP will let you have some T3 because you need it". But he thinks I'm fine! So won't do anymore than prescribe the 125mcg Levo.
When I plucked up the courage to add some T3 over a year ago, I did it very cautiously, probably too cautious. I reduced my Levo by 25mcg a day and added in just a quarter tablet of T3. 2 weeks later I added another 1/4 and held onto it until I could run another test. The results of that test showed my levels of both T4 and T3 had dropped. I'd not got back to where I was on Levo only. But there was one glorious day, the sun was out in February and it was lovely. I had arranged to meet a land agent at a piece of farm land I was helping Dad sell. For the first time in years I put my wellies on and walked easily around the slightly muddy field. It was a big field with a steep hill in part of it but I felt good, my legs felt good. When I got back to the car I suddenly felt over-stimulated, hot and jittery but in a pleasant way. Next day the persistent AF started. I could simply have been that my efforts in the field were good because of the T3, but that I overdid it and ran out of any available.
I don't know. I only know that I've never had an easy time of it on thyroid meds and I have no doctor to guide me.
I feel that when we are hypothyroid we only have so much energy each day and once that is used up that's it - we're worn out! I have to do anything that requires effort in the morning, by the afternoon the will and energy have disappeared.
Like you have described in your field walk, I get good days and bad days too. I think its always best to start the day being active, if I sit at this PC for too long in the mornings then I develop lazyitis.
But it shouldn't be like that. Just think what Hilary Clinton achieved in her Presidential campaign. On NDT. There are sports people on thyroid meds and many thousands of ordinary people living normal lives. We need enough and of the right type.
I'm worse in the mornings after I take the Levo and improve late afternoon/evening when it wears off a bit. That's not right either! I'm just 57 now and run my own business, it's hard work and quite physical. I have no pension to fall back on, I have to keep going. So I'm not prepared to be sidelined. It's so hard though. I pour with sweat from the head from the slightest effort.
It sounds like your dose needs an increase Jean. Also, have you tried splitting it and taking half when you get up and half around 3pm? But first, where are those numbers sitting and can you get a raise? For those of us on medication the TSH should be around 1, many need it below 1 to feel right.
My last TSH test was 1.12 and the labs in my part of the UK will only measure TSH nothing else. That's interesting what you suggest re splitting the dose, I didn't know that could be done.
Well the labs will test the full panel, it's just the GPs in your practice don't want to pay for it so they tell you that. All labs will test TSH, FT3 and FT4 and without them you have no idea if you are adequately treated or not. Your TSH is a pituitary hormone not a thyroid hormone, and it can be affected by different things and thus mislead you.
You shouldn't be running out of energy with a TSH of 1.12. But, how do you do your tests? Another vital part of the jigsaw that no GP will understand because they have been told it doesn't matter. Always book the earliest blood test you can on the day of the test. 8.30am is ideal. Eat nothing beforehand from the night before and drink only water. Do not take your Levo before the test. Take it with you and pop it as you leave the surgery. If you take your dose you are simply testing the best you ever feel and not the worst. Your TSH is on a daily cycle and is highest in the morning and falls through the day so a test at 2pm will be much different to a test at 8.30am and to get optimal results on enough medication you need to know what the worst is. No GP will even know this. It's something we thyroid patients know and share amongst ourselves.
If your surgery is really resistant to proper testing you need to lay it on thick about how tired you are and needing a nap in the afternoon etc to get them to do a full panel. Or buy a finger prick test and do your own so that you know and can fight for what you need.
It really is a dilemma knowing what to do for the best when you have both afib and hypo. I did well on a levo/ NDT combo for years till I had my first afib attack. My endocrinologist thought I was taking the prescribed Cynomel as NDT is forbidden here in France but the dosages were similar . The cardiologist at the hospital had a hissy fit about the T3 as if it were cocaine. I think he must have given the endo a hard time as she was very guarded about continuing it when I next saw her . Since then I have only taken the Levothyrox and at one point my TSH was well over 6. I am struggling to get it up to 87.5 mcg especially as I want to wean off the Nebivolol. Most docs seem completely unaware that a properly functioning thyroid produces around 9mcg a day of T3 and relying on conversion can be a bit hit and miss for some people or as in your case just not happen at all. When you say you added a quarter tab of T3 are you talking about Cytomel ? That was the T3 I was prescribed when I lived in the UK. I started importing NDT from America and took one grain plus 50mcg Levothyrox. This gave a total of 88mcg T4 and 9mcg T3. On T4 only now I have put on weight and feel much more tired than I used to.
Did you not like the Cytomel/Levo combo? Why don't you go back to importing your own NDT if you felt best on that combination? Was your heart rate good on the combo and faster now you are Levo only? It's hard though isn't it? Without support. I regularly doubt myself. I shouldn't. I've been reading about thyroid for years, I could probably write the physicians exam questions on it! But when Afib gets thrown into the mix I think we feel even more nervous. And you are right, they do act like T3 is cocaine!
My T3 was imported from Turkey and is called Tiromel, 25mcg tablets.
I thought at the time I would like to try NDT. I moved to France and the equivalent of Cytomel ( Cynomel) came in minimum 25mcg tablets that were hard to divide. My husband started taking NDT so we imported it for both of us. The company in America will not ship to France so it always has to be sent to friends in England who bring it when they visit. What stops me taking it again is fear - fear of making the afib worse. At the moment I need a hip replacement op which has been delayed because of the virus. The pain and lack of mobility stresses me and I have to minimise my consumption of painkillers as they upset my stomach ( even paracetamol ) which increases ectopics . I have had 4 afib attacks already this year compared with only 5 between 2015 and 2019 ( none last year). This is all mixed in with continuing relapses from being floxed again in 2014 and 2015. One of the nasty consequences of Fluoroquinolone Toxicity is not being able to tolerate drugs even if prior to being floxed they were tolerated. I just don't want to add T3 to the mix at the moment. Perhaps when I have had my hip done and recovered I might try a quarter grain after lowering the levo to take account of the T4. There is a lot of anecdotal evidence that Fluoroquinolones can cause hypo -certainly mine was diagnosed in England after being floxed there years ago. Drinking the fluoridated water in Birmingham would not have helped either. But they can also bugger up the response to treatment. There is a website done by a person to whom this happened . It's all too complicated!
Hi jean - I just got my bloods back and they have shot up to 7.14 when previously at 4.7. I think I am now in persistent AF and GP was concerned that by increasing my levothyroxine dosage to 75mg may impact AF. Is this correct?
I upped mine to 75mg with no change to my AF. Ask if you can try it. I believe your TSH needs to be below 1 to feel really well. It's too high as it is. Are you feeling drained of energy?
GP is wrong. You need to treat hypothyroidism separately to AF. People with perfectly good thyroids get AF. People with no thyroids but on medication get AF. There is too much significance put onto the possibility of AF with thyroid treatment. Doctors don't think half the time.
You are on a starter dose of Levo. That's not good. You probably have lower circulating levels of thyroid hormone now than you did before you began because 50mcg is enough to make your own thyroid think "I shan't bother" but not enough to replace it's efforts.
There is evidence in the medical papers that too little thyroid hormone can cause AF as well as too much. It is less common and harder to find the reports, but they are there. Jean is right, your TSH will need to be around 1 or below before you feel well, BUT you also need to keep an eye on your free T3 and free T4 levels too. Levo is just a storage hormone. On it's own it's no good to us. We need to be able to convert it to T3 at the cellular level. It's the T3 that gives us energy etc. So if for some reason you can't convert the storage hormone successfully you will remain sick.
GP's rarely check this, and if they do they don't know what to do about it so you have to learn a lot and insist a lot. Start now, with an increase in meds and retest in 8 weeks time. If you still have a TSH over 1.5, trial more. Doses should be increased by 25mcg of Levothyroxine at a time and retested every 6-8 weeks to allow the hormone time to work. When closer to your ideal goal, you might need less than 25mcg increases. Then you either cut the tablet into 1/2 and increase by 12.5 per day or take another 25mcg tablet every other day or 3 times a week etc. Because it's a storage hormone you can vary how you take it to get the levels right.
Thank you. My T4 level is 15.3 but T3 has not been tested. Do you think I should request this now? Or wait until the next blood test. Why would the GP say the levothyroxine would stimulate the heart and could worsen AF?! I will prob need a new prescription as I only have 50 mg tablets.
I am in persistent AF. I'm afraid your GP knows little to nothing about thyroid. And I'm afraid he's not alone. So few doctors have a clue for thyroid patients these days. They put patients on starter doses like yours, ignore your symptoms and if your blood test just scrapes into the reference range by the skin of it's teeth, you are declared "fine" and sent on your way.
I have no idea why he thinks a rise in T4 will stimulate the heart because it's an inactive hormone. It has to be converted into the active T3 hormone before it will do anything to help or hinder us. You haven't provided the reference range for your blood test result (important) but if it's a standard UK test your range might be 12-22 and your 15.3 is actually only 33% through the range. A good level of FT4 would be 75% or slightly more. But it is impossible to see what's going on unless we get FT4 and FT3 tested together. You can ask him if he will test you for a full thyroid panel, to include those 2 readings, but the chances are he won't. Many surgeries won't do it now. We (hypo patients) mostly do our own using private test services. But of course we have to learn how to deal with the results too. The NHS has it's own private test service called Lets Get Tested I think, and a TSH, FT3 an FT4 test costs around £29 which is a good price. It's a home finger prick test.
Only if your FT3 result was towards the top of the reference range would you be in danger of irritating your AFib. Ideally our FT3 and FT4 should be around 3/4 of the way through the ranges, sometimes a bit more. And a test of both at the same time will show up any conversion issues you might have.
For good conversion you need your Ferritin to be at least 80 and good results for the rest of the iron panel. You need an active B12 level over 120 and your Vitamin D needs to be around 100.
Sadly GP's no longer understand this stuff. They are given half to one days training at the moment to cover hypo and hyperthyroid issues. It's a vital hormone system and it's being left to suffer, as are we.
If you want to get anywhere you will have to fight for it and learn about it. But your FT4 level is too low. You need an increase of 25mcg now and retest in 6-8 weeks as I said before. You are aiming for 75% through the range or above.
If I were you I would ask your GP for the following tests:
Full iron panel
B12 (that will be serum on the NHS, not active)
Vitamin D test
Full thyroid panel to include the tests listed above + thyroid antibody tests.
If he says no to any of those, he's going to keep you sick, so ask for a referral to an endocrinologist to help you with your thyroid in line with the Afib. It's hard for him to refuse that.
A final note, something else they don't understand so we don't tell them we just do it, is that on the day you are due a thyroid blood test, book the test before 9am, don't eat or drink anything other than water from the night before (food and caffeine affect hormone levels), don't take your daily thyroxine until after the blood draw so that you have a 24hr gap since your last dose. Stop any B Complex or any supplements that contain Biotin for a week before the blood draw.
Thyroid works on a circadian rhythm. When you have the blood test taken will affect your results and can stop you getting adequate treatment. Then get a printed copy of the results and file them. I have been working on mine this afternoon for something. I have results going back to 2009. It's so helpful to see what has worked and what hasn't.
Please don't be afraid of Levothyroxine and Afib. Once you are hypothyroid you can never become hyperthyroid (although they call it that) you can become overmedicated, but that's easy to fix if it happens, you just reduce your dose. Whether increasing or decreasing you always do it in 25mcg increments and leave 6-8 weeks between because it takes that long for the cascade effects to take full effect.
Thank you for the above. So you think it’s best that I increase dosage now rather than wait for T3 to be confirmed? The reason i ask is that as I am now in persistent AF, I don’t want the additional meds to have any further effect.
Surely you need to go back and convince your GP to let you increase in order to get the extra prescription to allow you to try? Or you won't have enough tablets.
And while you are there (or on the phone as it is these days) you can ask for the tests. If he agrees, wait for the tests before you increase. As I've said above if you increase your meds you must wait 6-8 weeks before you test again to let it work.
Personally I would ask for further tests first. Get the results and then ask for the increase (provided the results are showing that is suitable) and you will need to work out where you are in the range etc before you ask so you have the determination to follow through.
I've explained tons about this above. There's no reason for an increase in T4 to affect your AFib negatively if your test results are within range and lower than the top of the range. But you must make that decision based on discussion with your doctor. I'd urge you to stand your ground with the doctor over getting more tests first and then take it from there. If your doctor says no, ask for a referral to an endocrinologist to get a second opinion.
Hi. I have both. I think it’s quite common.
I go to a large GP practice so can get to see one who’s a bit more cardio- focussed if I really want to. When I last did this I was sent for an ECG to look at my QT interval, which I’m sure the others wouldn’t have thought of.
Have you looked at what Sanjay Gupta says? If you can’t change your GP and have no cardio or endo advice it might be worth getting a consultation with him?
I do see the 'cardio' focussed GP at the practice. He ran an ECG for me a few weeks ago ahead of my routine 6 month following cardio version appointment with the cardiologist. When the appointment came, the cardiologist said he hadn't got the ECG even though I checked with the practice manager and he confirmed he'd sent it to the secretary and checked on the phone that she had it! But the GP looked at it and told me I was back in Afib. Neither of them have mentioned QT interval at any point in the past few years of ECG's and other investigations.
I was seeing the GP about adjusting my bisoprolol or levothyroxine. My blood tests generally indicate that I should take more levothyroxine but we stick to a dose of 100 in an attempt to keep my heart rate down. A long QT interval can be linked to hypothyroidism, ventricular ectopics and atrial flutter so he might have increased the Levo that time. As it turned out the person doing the ECG sent me in an ambulance to the local cardio care unit and the cardios decided to increase the bisoprolol. I think the moral is that it’s trial and error getting the balance right, different people will have different opinions, and it’s important that they get yours.
Quite honestly I struggle to understand it all!
Sanjay Gupta is in York. He did a video earlier this year about hypothyroidism and afib. Google his name and hypothyroidism.
Thank you. I found this last night. But he doesn't know very much about hypothyroidism at all. He's at least acknowledging it, but the only thing he talks about is basic Levo treatment. So what about those of us who get no benefit from that? But it's a start. He's aware at least.
Yes I have AF rapid and persistent.I dont feel it but I have excessive sweating and no energy until CCB Diltiazem.
I have hypothyroidism due to the removal of whole thyroid and 12 lymph nodes with 2 affected.
At low risk
1. I declined Radio Active Iodine
2, I declined being in Supression
At 57am I take 125mcg Synthroid (the best as it has a expiry date, it is in a kiddy lock and comes in 90's. I take 1 x 100mcg and 1 x 25mcg but I need 2-4 a.ms of 150mcg in one month as my TSH creeps up.
Surgeon and I agreed on between 2.0 - 3.0 TSH level. Don't concern yourself with T4 level.
I had a stroke Ischaemic (embollic type) in 2019 due to undiagnosed Papillary Thyroid Cancer, with AF rapid and persistent.
On Metropolol h/r during day 186 avge night avge 47 hbpm. 2 pauses x 2 secs during 24hr monitoring.
Changed to Bisoprolol (better if you have AF) 156 avge day and 48hbpm night.
NOT CONTROLLED
I continued to have excess sweating and no energy with having to STOP when exerting myself (on task or walking)
My new Locum Dr asked me to see a named Cardiac Specialist.
He was interested and I related my history.
He put me on CCB Diltriazem.
Added to my Bisoprolol AM and PM , I dropped 108 hbpm within 2 hrs on 180mg of Diltiazem.
Settled on
120mg Diltriazem am and 2.5 Bisoprolol at night.
YOU NEED TO GET RIGHT MEDS TO CONTROL YOUR HEART BEAT.
My DHB Cardiac Specialist blamed hypothyroidism.
But nothing to do with that as I check regularly to maintain 2.0-3.0 normal level.
YOUR HEART IS BEATING TOO FAST AND YOUR BODY IS UNDER STRESS WAITING FOR MORE 02 TO CIRCULATE.
I have finally got there. With heart slowed no more excessive sweating and easier walking and exerting myself.
JOB DONE.
I had an op in March - removing Johnson &Johnson Mesh. I was told unless my h/r was less than 100 they would not go ahead. Then it was 93.
I’ve just come across this post… Three years after it happened! I found it fascinating. There must be so many of us with thyroid problems alongside AF. It’s a bumpy journey isn’t it?
I have Hashimoto’s, and permanent atrial fibrillation. I haven’t yet found a medication for AF which suits me. Currently feeling absolutely lousy.
I'm sorry you still feel bad. It's a rotten pairing of illnesses I admit. But for me I concentrate almost exclusively on the thyroid side thinking the AF may improve if I can get that right.
I agree about getting thyroid right. In fact, when I first got my T3 added and stabilised, my AF symptoms were almost non-existent. A lot of recent life stresses have messed up my thyroid levels I think, and, as a result, have been having bad AF symptoms and wretched anxiety. Spent 4 hours at A and E today…fortunately they weren’t too busy. Part of the anxiety is worrying the heart guy will want to take my T3 away!
Problem is that my endo is ultra cautious re AF. Endo first sent me to colleague cardiologist. Endo wanted me to stop T3 at one point because of palps. Nervous of both of them!
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.
Tachycardia -afib or what while cycling
Afib and Flecainide
Low blood pressure while in AFib
p/a/f and beta blockers
Afib or not afib
