GRAVES AND ATRIAL FIBRILLATION

[NIKEGIRL]

Hi. Has anyone has a fast atrial fibrillation with Graves’ disease. Super fast heart rate 170-200bpm?

[bantam12]

Is it AF as in irregular or regular but fast ? whichever it is you need to slow it down, if your meds aren't working you need to speak to your Dr or go to A&E because if it's AF you risk having a stroke if left untreated.

[NIKEGIRL in reply to bantam12]

It has happened twice. Dr says it’s fast AF meaning fast heart beat at 170-200bpm and irregular being atrial fibrillation.

[NIKEGIRL in reply to bantam12]

Sorry. It lasted 4 hours and then returned to normal by itself. I just wondered if anyone else had this happen to them

[bantam12 in reply to NIKEGIRL]

Yes I have AF and I'm on an anti arrhythmic, an anticoagulant and also have a pacemaker because as I said there's a risk of stroke if ignored. When I had Graves many years ago I was on propanalol to control heart rate but long term being Hyper for many years has left me with other heart problems so I would advise you get your treatment sorted out.

What is your Dr doing about treatment ? You should see a Cardiologist for further tests and if you go into AF for hours you should go to A&E.

[NIKEGIRL in reply to bantam12]

I have asthma so can’t take propanol. I am on Betaloc 23.5 x 2 tablets. Dr doesn’t think I m at risk of stroke so hasn’t prescribed anti coagulant. My Graves’ disease is uncontrolled at this stage with my numbers really high. No doubles, no tripled but like 4-5 times what they should be. I am struggling psychologically with taking 6 carbimazole a day. I am scared with all my being I will end up hypothyroidic. It’s such a large dose and I don’t trust doctors. I’m not a great patient

[bantam12 in reply to NIKEGIRL]

Believe me it's better to be Hypo than Hyper !! Are you under an Endo or is GP treating you ? Honestly you have to get over your fear of treatment, Graves isn't something to mess around with, doesn't the possibility of thyroid storm worry you more than taking a few tablets a day ?! As I said if you go into prolonged AF again go to A&E so they can monitor and treat if needs be.

[jimh111]

Did you ever get your TRAb results?

Earlier you mentioned you were given a 'tincture' by a medical herbalist. I would discontinue this as we don't know what is in it. There's always a possibility that it affects the thyroid or induces an antibody response. For now it seems safer to hold off taking it (if you still are).

Your thyroid hormone levels are incredibly high, much higher that any patient has reported on this forum. It is vital to bring them down, either by carbimazole or a thyroidectomy. Six tablets of carbimazole per day is the usual starting dose for someone with hyperthyroidism, so it's not much, certainly not much for someone with high hormone levels. They make 5mg tablets so the dose can be tuned to the individual over time. It would seem a lot less if just one 30mg tablet were taken daily.

The carbimazole dose will be reduced once your hormone levels are under control. If your heart rate remains at these high levels I'd speak to your endocrinologist. In special cases they can prescribe higher doses of carbimazole to bring the thyroid under control sooner.

There are lots of risks with hormone levels this high, the longer it goes on the more chance there will be irreversible cardiac changes so stay on top of it. Also, remember that hyperthyrodism causes anxiety, a biochemical effect which nonetheless feels very real. It might help to remember this when you feel really stressed.

[4872angie]

I was regularly getting a resting heart rate of over 100 and it would go up to almost 200 daily (tachycardia) with any kind of motion - until the carbimazole was sufficiently high enough. Took ages to get the right dose 40mcg Carb 25mcg propanalol (still relatively low doses) I was told I was at risk of a sudden cardiac event if it carried on at the rate it was. I now feel like rubbish but not sure if that’s heat intolerance or whether meds have tipped me the other way.

[NIKEGIRL in reply to 4872angie]

I’m sorry to hear you have had those issues. They are frightening. Yeah I feel pretty blah as well. Thanks for you reply.

[london12345]

I was diagnosed with Graves in 2002 and took Carbimazole for several months on 2 separate occasions. However, my thyroid levels never remained stable for long.

I was treated with Radio active Iodine in 2008 which after a period of time resulted in me becoming hypothyroid so was prescribed long term Thyroxine. In 2013 I developed AF for which I take Flecanide, Bisoprolol and Rivaroxaban.

[NIKEGIRL in reply to london12345]

Thanks for the reply

[Gravety in reply to london12345]

Hi 12345, How was your AF diagnosed? How are you doing on the meds? Are they working - do you feel better?I sound like you. Diagnosis of Graves 3 years ago. Carbimozole for 12+months which never stabilised. Agreed to RAI (as hyper symptoms horrendous) and now under active and on levothyroxine (125mg x 5 days and 100mg x 2 days). I do take meds for high BP, which had been well maintained. However, this passed month I’ve had 3-4 alarming episodes of very fast heart beat along with extremely high BP 200/100, with pains in chest and feeling dreadful - convinced I was having a heart attack!I’ve had a first responder on one occasion and a trip to A&E in an ambulance on another.

To manage symptoms, GP upped my beta blocker (bisoloprol) to 15mg (side effects are not nice) whilst I await provision of a monitor. I believe I’m to take a reading over 4 weeks when I feel symptoms. Thing is, the high dose beta blocker has suppressed heat rate and BP so much (eg pulse can now be 58) I’m anxious I won’t get symptoms/readings to record to try and verify it is AF.

I would have expected possible AF when my Graves was untreated, but occurring now has rather taken me by surprise.

Just wondered if you had any tips/thoughts/views to share with ‘Worried up North’ -it’s been scary.

Thanks in anticipation.

[london12345 in reply to Gravety]

I'm sorry to hear you are having it tough at the moment. I was exactly in the same place when I was first diagnosed, feeling I would never be able to cope or live life normally again and feeling VERY anxious and constantly checking my pulse. However things have improved. The meds have improved the severity of any AF episode I have giving me the confidence to live again including the knowledge that I can, and do, get on a plane which initially I was too apprehensive to do incase I had an AF episode!

My suggestions for you are

*Firstly I would request (insist)your GP refers you to an ELECTOPHYSIOLOGIST (EP)who is a cardiologist that specializes in the 'electrics' of the heart these are the experts when it comes to AF as they will look at medications to treat the 'rhythm ' of your heart and not just the 'rate' and will discuss the option of an ablation.

*Look at the AF association UK website they have so much useful information,/leaflets they even hold a yearly conference which I attended once and found extremely useful and I gained so much knowledge.

*As AF patients we are at 5 times higher risk of having a stroke so it is imperative that your GP asseses your CHADVASC score with regard to prescribing an anticoagulant (not Aspirin!) as this reduces the stroke risk. Having high BP, being female would mean a score of 2. Obviously it is an individual's decision re anticoagulant however I know I feel mentally better for being on Rivaroxaban and any risk that comes with that balanced against having an AF stroke.

I was diagnosed in 2015 in A and E after having an episode and was rushed to A and E with fast AF . I had several ECG'S prior to this but none picked up my AF (PAF) I was also given a 24 hour monitor 2013 but again it wasnt picked up. My GP referred me to an EP in 2015 who confirmed AF and advised that my 24 hour test in 2013 did, infact, show AF! It was here that the EP prescribed Flecanide, Rivaroxaban and Bisoprolol. I still get episodes of AF but not to the extent/severity as previously experienced. The EP has advised me that if I go out of rhythm and do not convert to Sinus rhythm I can take an extra Flecanide which in 5 years I've only done on a handful of occasions and it has settled down.

Obviously everyone's AF journey is different and meds that work for one person may not be the right ones for another. There are many combinations of meds that can be tried. So it is important to discuss any concerns you have you discuss with your GP and EP to find the best treatment for you.

Good luck.

[Gravety in reply to london12345]

Thank you London 12345 . Very reassuring words. I start my journey next week when I collect a monitor for a month....though 'tsk', wouldn't you know....things seem to have settled down (hardly surprising giving the level of Bisoprolol I'm on - surprised I'm not actually in a coma to be frank)! I really appreciate your kind support - you've given me some good pointers.

Thanks.