Feeling very alone with all this, especially at his time. Has anyone else had similar symptoms to me?
I started with AF about 7 years ago. It was treated with (the dreaded) Amiodarone for 2 years, (worked well) but I had to stop taking it when I developed overactive thyroid. From February 2019 I have been in permanent AF. Back then, my GP referred me to Endoctrinology but they marked me up as inappropriate referral. When my GP rang to check they wouldn't treat me because of the Amiodarone! I was referred back again recently and had a telephone appt last week - thyroid very high and am starting on Carbimazole asap - the specialist said this will have been making my AF worse!
As well as feeling rubbish, because of the hyperthyroid, my breathing is getting worse and my ankles have started to swell at night. My GP did a BNP test and the result came back at 1700. He has referred me back to a Cardiologist but this was in March just before we went into lockdown. The waiting list was already 6 months so am not expecting an appt anytime soon.
My medication at the moment is Bisoprolol, Ramipril, Xarelto, Digoxin. I am due to start Carbimazole for the thyroid when I get the prescription. I spoke to my GP yesterday and he is prescribing Furosemide for the water retention. He also said this may help with the breathing - does this mean I have fluid on the lungs??
I feel so ill - sick, shaky and tearful because of the thyroid as well as the symptoms of the permanent AF - breathlessness, exhaustion and the constant feeling 'my heart is trying to escape', being made worse by the palpitations from the thyroid.
I hope that maybe the Carbimazole may bring some relief but I suppose what I am really asking here is the prognosis for the failing heart? I am so down with it all that I am assuming I am on a very limited timescale.
(I should add that I have seen 2 EPs during all this . I have a significantly enlarged left atrium and leaking mitral valve)
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amyrosie
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Amyrosie, really feel for you, never easy is it. As you probably know, we are not medically trained but there is a strong connection between the thyroid function an AF and unfortunately, there is a lot reports about the affect amiodarone has on the thyroid. In my case, I was diagnosed with an overactive thyroid around 12 months ago but NOT due to amiodarone. My EP made it clear that it was important to resolve the thyroid problem before having further treatment for my AF. I was put on a low dose of carbimazole prior to having radio active iodine treatment nearly 6 months ago. At the moment, my thyroid is in range but the chances are it may become underactive but it is said that this is much easier to manage. I'm not sure how this will help you as I don't know how or if taking amiodarone affects ongoing treatment but I very much hope you get some positive answers soon....best wishes.
Thank you FlapJack, I'm glad to hear that your thyroid is now back within range and you can start getting your AF sorted. I had a bout of Hyperthyroid about 20 years ago, which was treated with mediaction so was probably a bad candidate for the Amiodarone. Ironic that the treatment for my AF has now made my AF even worse! All the best, Amyrosie x
Hey I too have a failing heart and a overactive thyroid and fitted with a de-fib . I am also taking amiodarone which is making my thyroid worse ❤️would love to chat more
Hi Gillymaccy - will they let you continue with the Amiodarone? It was working really well to, but had to stop taking it as was feeling so ill with the Thyroid. Please do message me. I would like to hear from you and to know if you are getting any treatment for the heart failure, x
Like Fluffybee, I wish that I could hug you. You are not alone. I come on this site here to validate that I, am not the only one feeling this way.. One day at a time has been my new motto.
Hi,i can understand how you feel because i had an overactive thyroid and my heart rate was over 110.Carbimazole will do the job( i am on Carbimazole 5 mg and Propranolol 40 mg twice a day)you have to wait aroud 2 weeks to see improvements after starting Carbimazole.Everything will be fine! A hug from me | xxxxx
Thank you Miha60 - I have been prescribed 20 mg a day to start asap, with a further blood test in 6 weeks. That still leaves me with the problem of the permanent AF, but I think the symptoms of thyroid are the worst at the moment!! x
Have you seen a cardiologist yet? EP's are essentially concerned with the electrical problems so it may be beneficial to get a point of view on your essential plumbing. In my experience the system is under such stress that you will have to be in a dire strait before they are willing to act.
I hate to say this, but your best bet may be to pay for a private appointment with a cardiologist. His or her secretary will arrange this for a suitable fee, and you will probable be seen surprisingly quickly. It Is either that or wait for what might be an extended period.
I have seen been seeing Cardiologists for the past few years but I asked to be referred to an EP as the problem has been AF. This has been permanent for the past year and now progressed to Heart Failure. My GP has referred me back to a Cardiologist. Are EPs, Cardiologists anyway, who have specialised in AF?? I am happy to have a private consultation and have seen EP twice privately as the NHS was so slow and now, will be even worse, but don't know what else they could suggest. I have had all the scans - significantly enlarged left atrium. My breathlessness and swollen ankles at night has got really bad lately - quality of life not good. Thanks for your reply Lanc2, Amyrosie x
Electro Physiologist specialising in find out which part of your heart's electrical system is misfiring or not doing what it should be doing. When they find out they get a very fine probe that can be heated up if needed , stick it up through your veins and lightly burn the places (ablate) where the duff signals are coming from, hopefully putting a stop to any misfires.
Hi,i started as well with 20 mg Carbimazole for only 2 weeks and then i had blood test and the Gp put me on 10 mg .I been on 10 mg for a while and than on 5 mg and the blood test at 6 weeks.I been on 5 mg for a whole year and then the Specialist told its time to take a decision because Carbimazole cant be taken for years because of some side effects in some patients.I declined radioactive iodine and i am still on Carbimazole since 2015 but now i am taking 5 mg every other day or even one at 3 days and Blood tests are ok,not only TSH but as well blood count ,liver and kidney function.You will see that Carbimazole will help you a lot and you wont have hopefully AF after the effect of Carbimazole kicks in.The little thyroid gland has a vital role in everything and when she is ok,the other follow.Keep us update,please! Wish you all the best and have trust and patient because everything will be ok .I am takung as well Ramipril and Amlodipine for hight blood pressure.A big hug! Xxx
thank you Miha60 - I didnt realise you couldn't take Carbimazole long term. When I took it for a 'bout' of Overactive Thyroid many Years ago, Carbimazole did the trick and it never returned, until I took Amiodarone, so hopefully yours has gone for good too! x
Thank you so much Miha for getting back to see how I am. I know the Carbimazole is supposed to take 2 weeks to kick in, but I started to feel better almost straight away. It is now 3 weeks and I have not felt this good in ages. My AF is still permanent, but I am not as aware of the thumping, erratic beats, I am less breathless, have more energy and not as feeling as shaky. My mood has lifted and I am actually glad to wake up in the morning without a feeling of dread, so yes, the overactive thyroid was really making all my AF symptoms worse. I wish I could have seen someone sooner as I have been getting progressively worse over the past year. I was referred to endoctrinology a year ago, but they marked me up as 'inappropriate referral' because of the Amiodarone!! My quality of life has been rubbish. I have a blood test in 6 weeks to test my thyroid. I am just so glad to have a break from feeling so ill. I can't believe how much the thyroid impacts on the heart!! How are you Miha? You sound as if you are still keeping well from the report above. Amyrosie xx
Good morning and i am so glad to hear you are feeling better..and you you will fell even better,belive me!
Its amazing,as well what a little tablet can do.Wish you all the best because i have been there.I had my annual thyroid blood test check in February,TSH was 2,6 ,same like in 2019.
I am taking as well Propranolol,this helped me a lot at the begining to calm me down ,its a Beta bloker and slow the heart rate and makes it work less.Its a versatille tablet ,good for high blood pressure as well.
Amiodorone is pure poisen to the thyroid gland which is why they banned it years ago; there are alternatives. The damage to your thyroid should resolve once it's out of your system but can take 9 months. I was told if it causes overactive thyroid it's more tricky to treat. You must get your Endocrinologist to work hand in hand with your EP. Once your thyroid levels are normal your AF should resolve. Your leaking valve might improve as your heart is working overtime, or you might need surgery to repair it. As I understand the thyroid and heart failure from the research I have done; if you have heart failure brought on by being hypothroid for year's without treatment, or indeed the wrong treatment, the heart cannot remodel itself. This is my situation. But when I researched an overactive thyroid it stated that the heart could remodel itself. However you need to control your thyroid quickly to ensure your left atrium does not get floppy from overworking. Definitely take the anti thyroid drugs. If you never had an overactive thyroid before you took the Amiodorone there is a strong chance the Carbimazole will work and you can then stop taking it. If not you will have to take radioactive iodine.
That's sounds so difficult! I really hope you get some answers soon and that it gets better. I will echo the sentiments of others that we are thinking of you.
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