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Hi I am new here just been told I have Afib

Angela profile image
44 Replies

Went to the doctor a few weeks ago had some test done because I have been having palpatations, today I went back told me I had Afib he’s going to put me on warfarin I also have an under active thyroid I would be very grateful for some Help please ( my name is Angela )

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Angela
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10gingercats profile image
10gingercats

It is unlikely to happen but beware Amioderone for Afib and thyroid problems .It should not be prescribed if you have Afib and have thyroid problems. Read up on this so you have your info. in front of you should a doctor be about to prescribe you Amioderone.

Angela profile image
Angela in reply to10gingercats

Thank you for replying 10gingercats is Amioderone ,warfarin ??I really don’t understand it all its very alien to me

CaroleF profile image
CaroleF in reply toAngela

No. Warfarin is an anticoagulant (or 'blood thinner') which many people with AF take in order to reduce the risk of a serious stroke (a big risk for older people and women with AF). Amioderone is a drug sometimes prescribed to try to control the rhythm of the heart, but as you've just been advised it shouldn't be taken by AF-ers with thyroid problems. It was just a friendly warning in case a doctor tried to prescribe it for you.

BobD profile image
BobDVolunteer

Welcome to our world. Best advice I can give you at this time is to go to AF association website w=and read till you drop, Knowledge is power to dispel fear.

Thankfully you are on warfarin which is an antcoagulant to helpt prevent stroke which AF raises the risk of by five times, What other drugs are you on./

Do be aware that if your GP is unable to sort out your problems in one month he should refer you to an arhhythmia specialist. Most cardiologists are plumbers not electricians so you may need to ask for an arrhythmia specialist or electrophysiologist,

Angela profile image
Angela in reply toBobD

Thank you BodD for you info he said that the blood will be checked every six weeks if I feel it’s not working I will definitely ask for a referral.I take 100 thyroxine everyday once again thank you..

CaroleF profile image
CaroleF in reply toAngela

Taking warfarin is not going to do anything to control your heart rate or rhythm, Angela. It is prescribed in order to lessen the risk of a serious stroke; that's because it makes your blood less 'sticky' and therefore less likely that a clot will form and travel to the brain causing a major stroke. The blood check is to ensure that the dosage of warfarin that you are taking is working properly. That can be adjusted as and when needed.

I think that when BobD advised you to ask for a referral to an electrophysiologist if your treatment wasn't working he was thinking that your GP may also be prescribing medication to control your heart rate and/or rhythm. (with apologies to BobD if I've misinterpreted what he said)

radagast58 profile image
radagast58 in reply toAngela

Hi and welcome Angela

I think you should be having blood tests more frequently than six weekly until your blood levels of warfarin are optimised and your dosage stable.

I'm surprised if your GP hasn't prescribed specific medication to manage your heart rate and rhythm and I would be looking for a referral to a specialist cardiologist

All the very best for the future

David

Angela profile image
Angela in reply toradagast58

Hi I have a referral in February maybe I should give the doctors a call on monday and ask them about it thank you

pusillanimous profile image
pusillanimous in reply toradagast58

I'm surprised at the 6 week gap. I was in and out of the path lab (maybe our system in South Africa) giving samples frequently, until the level was correct and was then told I would have to go back regularly to ensure the levels were correct. Since this seemed to me to tie me down too much, I opted for Xeralto-just one pill a day, and am happy with that.

Angela profile image
Angela in reply topusillanimous

I really don't I have a lot of questions on monday when I see the nurse there is so much information like radagast 58 said why didnh e give something to mange my heart beat I really need some answers from them ...

CaroleF profile image
CaroleF

Hi and welcome, Angela. Whilst it's not great news to be diagnosed with AF, at least you can be sure that there are many friendly and supportive people here who will be more than happy to answer any questions you may have. We are not qualified medically but do, between us, have a great deal of experience in coping with the condition.

Without knowing too much about you it's hard to offer specific support/information, but I think everyone here would agree that 'knowledge is power' (ie the more you know and understand about AF, the better able you are to deal with it) and so I'd recommend that you go to the AF Association web site, where they have lots of helpful information, and read up as much as you can.

See here: heartrhythmalliance.org/afa...

As an example of how being well-informed can help, you'll learn that there are other anticoagulants apart from warfarin that your Dr. could prescribe and that many of us find these alternatives more convenient since they don't require the regular testing that warfarin does. (and have other advantages too).

Please don't feel 'alone'; there are lots of us here to help if and when needed.

Carole

Angela profile image
Angela in reply toCaroleF

Thank you Carol I wanted to cry this morning when he told me thank you for your support I will have a look at the web site ...

CaroleF profile image
CaroleF in reply toAngela

I know just how you feel/felt this morning. It's scary and worrying when you first receive the diagnosis. I had never even heard of the condition before and maybe you hadn't either. The key thing is to get a treatment plan that works for YOU. AF is such a mongrel condition and people's experiences of it, any medication required etc can vary a lot so sometimes it can be a matter of trial and error at first.

It's probably best not to bombard you with questions at this stage, but when you've read up about AF (and I'd advise not consulting Dr Google, but to stick with a trusted site like the one I gave) do come back here and ask away. It's also fine to have a rant about things if that's what you feel like doing. We all understand.

Sending cyber hugs.

Angela profile image
Angela in reply toCaroleF

Thank CarolFi know what you mean about Dr Google it can be quite frightening

Are you having episodes of AF or is it there all the time.? Are your thyroid tests in the correct range for someone taking thyroxine?

Angela profile image
Angela in reply to

Hi Oyster I don’t have Af all the time but I am a anxious person at the best of time. not long had thyroid test that’s why I went to the doctor I thought it needed adjusting it came back normal I am on 100 of thyroxine a day ..

Auriculaire profile image
Auriculaire in reply toAngela

"Normal ". Oh how many times have thyroid patients heard that from their doctors. That simply means within range which is quite wide and maybe not ideal for you. Did your doctor tell you what tests had been done ? Did you see the actual figures? I ask because I was told many years ago by my GP in UK that my thyroid was normal. When seven years later I was diagnosed with hypothyroidism I asked to see the earlier test results and they were not normal - not even within range. I had suffered another 7 years when I could have been treated. Needless to say I was not best pleased.

Hello Angela, and welcome to our world. Well, you knew something was not right and now you know what it is. AF is not the worst of things to have. It is a condition, not an illness or a disease and varies from person to person. We all have our own brand of it and some people have it all the time.

I think it's important to see it as a quirk that's developed in the heart's electrics. It does not mean that your heart itself has something wrong with it, although excessive AF can, in the fullness of time, alter our hearts slightly.

There are several ways forward, including lifestyle changes and drugs like Bisoprolol, Flecainide and Amiodarone. Warfarin doesn't combat AF but provides some protection against stroke. There are, as has been mentioned, alternatives to Warfarin, which is the cheapest option. Some people get on very well with it and some find they are often out of the therapeutic range. For the latter group, it is well worth investigating the alternatives as the costs (and tedium) of frequent appointments for blood tests soon mount up.

Angela profile image
Angela in reply to

Thank for taking time to reply I am overwhelmed it gives me comfort I am going to be looking up all the information I am receiving thank you...

fibber-me profile image
fibber-me

Hi Angela, so sorry for your diagnosis but you will be ok. Try not to worry. Follow doctor’s advice. Digital hugs to you 🙂

Hi Angela. I too have Afib and an under active thyroid. I’m 75 and still manage to lead a full and active life. It will take a while to get everything sorted tablet wise, Warfarin never worked for me, beta blockers don’t seem to like Levo. Even now years down the line I’m still experimenting. Just dropped Levo to 112.5 a day from 125. Who knows if that will help but worth a try.

Di

Auriculaire profile image
Auriculaire in reply to

Why do you say that beta blockers don't like levothyroxine?

in reply toAuriculaire

I feel dreadful on them so was moved to a calcium channel blocker. Dr agreed with me when I mentioned it xx

Hi Angela

I got diagnosed a year ago and now on drugs to reduce risk and stay in rhythm . Sure i had it for several years before it was diagnosed therefore I was walking around at risk without knowing it . Arm yourself with knowledge and check out dr sanjay gupta's you tube channel it's very good.

All the best

Andy

Hi Angela, welcome.

May I ask which tests you have had? It is usual after AF has been detected on ECG to have at least an echocardiogram to check that the structure of your heart is normal and often also a 24 hour Holter monitor. A range of blood tests to check for any other problems such as diabetes, thyroid problems (you know this one) or electrolyte imbalances etc. Also, have you been referred to a specialist? The results of the above tests need to be reviewed by an expert.

We have all been through the scary days of early diagnosis, but as others have said, learn all you can, ensure you are appropriately referred and your AF can be treated and you will learn to manage it in the best way for your version of this electrical misfire of the heart. As you will read on here, everyone’s experience of AF is different and some, like myself, respond well to drug treatments, others do better with ablation of the areas of the heart causing the rogue rhythms.

Take care Angela

Pat x

Angela profile image
Angela in reply to

Hi Archie89 sorry not responding be4 I had an ECG was told it was normal then I had the Holter monitor I took it in the doctor never heard a word about 6 days later I rang was told I had AF I had no idea what it was don’t even think my doc knew I had a week holiday which this happened 2days before she recommended not to go then the day before the holiday early Friday morning I got a phone call my doc had sent my results to a cardiologist he said it would be ok to fly . When I came back I tried to call doc it took me 3weeks to get through then I spoke to another doctor he said so you passed out no I hadn’t apparently on the 16 of October at night there was a13 second pause it’s been worrying me ever since ,I have an under active thyroid diagnosed about 15 years ago in October they checked they only ever do the TSH which was normal I do have an appointment with the cardiologist on the 5 of February thank you for your kind words ...

Morzine profile image
Morzine

Hi angela,

Welcome to this strange world. It will get easier.....the shock of being given a label to what’s happening is indeed a huge shock and that in itself takes some getting used to......eventually thru reading here how folk get in with their lives you get to calm down and see it more clearly.....the warfarin will keep you safe from strokes......and maybe be astime goes on you will get tablets to keep the afib at bay......I’ve been here since May when mine started....I was in dismay, thought my world as I knew it was over....,time showed me it was far from over, I’ve had holidays since then and lifegoes onpretty much normal apart from blips.....take heart it seems a blurry future but the cloud will clear.

Fastbeat profile image
Fastbeat

Welcome to our world it can be scary to start with, things will get better.Read and learn all you can about AF ,then you will be better prepared to question your ongoing treatment.

Jamila123 profile image
Jamila123

Hi

Maybe correct the thyroid first before u start on other meds

Yes amiiderone can cause thyroid problems

My advise would be to first change lifestyle

Before going on the drugs as they carry many side effects that is not helpful in the long term for your heart

Research think out the box

I wish u well 🌸

Auriculaire profile image
Auriculaire

When did you last have your thyroid levels checked? Sometimes being on too high a dose of thyroxine can provoke afib. You need to get both TSH and FreeT 4 checked as recent study has suggested that T4 levels that are at the high end of the range can lead to afib. 100mcg is not a high dose but it may be too high for you.

Angela profile image
Angela in reply toAuriculaire

Hi I had my thyroid checked a few months ago I have a phone appointment to see if the Dr will do a free T4 and a T3 I am definitely going to look into everything that everyone as mentioned thank you ..

Jennifer53 profile image
Jennifer53

Hi Angela, welcome to my world. Im on warfarin almost 5 yrs now. It was a pain at first to get the dose just right but now I only get tested every 2 months. Do research anti coagulation. You will get used to it eventually.

JulieTw33 profile image
JulieTw33

Hi Angel!

So sorry to hear of your diagnosis, but you luckily stumbled onto this forum early on. I’ve had paroxysmal afib for 20 years and wish I had found this lovely group ages ago. My afib was managed really well with Propafenone till recently when that stopped working as nicely. I decided to have the ablation procedure. It went very well and so far no afib or palpitations of any kind and I’m off all meds. So just know there is hope and lots of treatment options. I agree with the above, Dr. Sanjay Gupta’s YouTube channel is wonderful as are all these lovely people on this forum. They are a wealth of knowledge and sound advice. So stick around, read up and ask all the questions you want.

JulieTw33 profile image
JulieTw33 in reply toJulieTw33

Sorry, meant “Angela”!! My big thumbs are always an issue when typing on my phone! 😂

missyf323 profile image
missyf323 in reply toJulieTw33

Did you have cryo or rf?

JulieTw33 profile image
JulieTw33 in reply tomissyf323

I had cryo. So far so good!

Angela profile image
Angela in reply toJulieTw33

I hope you don't mind me asking what is cryo ??

JulieTw33 profile image
JulieTw33 in reply toAngela

Not at all! Cryoablation uses freezing to “zap” the afib hot spots to stop them from firing. Maybe someone else can give a better explanation. Hope this helps?

Angela profile image
Angela in reply toJulieTw33

Thank u Julie Tw33 I will look into it

Angela profile image
Angela in reply toJulieTw33

Hi just been reading your post thank you for your positive reply its very encouraging there is so much to look into I now need to look into other anticoagulant..

Jjda profile image
Jjda

Welcome to the group, Angela. I was diagnosed with Afib in June of 2018. It is quite a shock, but it is certainly better knowing what is wrong so it can be helped before it has serious consequences. Everyone's advice here is comforting, and the information available is excellent. I, too would recommend you read all you can find, from reputable sources, on the subject. I assume you are in the UK, and I am not familiar with your health care insurance requirements, but asking to see an Electrophysiologist (EP) as soon as possible is a good idea. And, getting a new reading on your thyroid is also a good idea, as thyroid issues can exacerbate Afib. Again, sorry we all had to meet like this, but this is a good group for helping you feel less worried.

Angela profile image
Angela in reply toJjda

Hi Jjda its true this group is amazing I have an appointment on the 5th Feb to see cardiologist and blood test on monday and hoping to speak to my doctor about my thyroid hopefully do some more tests ...

Madscientist16 profile image
Madscientist16

Hi Angela, Yes, you have quite the learning curve ahead of you and the whole experience will be scary. But I want to let you know that you will be okay. Things WILL work out. Just breathe. You will look back on this someday and wonder why you were so worried. I wish someone had told me that at the beginning. That is why I am telling you this now. You are not alone.

Angela profile image
Angela in reply toMadscientist16

Thank you so much it is scary as you say I made myself go out tonight with my family or I would be sitting here and getting into a right stew thank for your kind and thoughtful words ....

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