Not wishing to boast, but I suffer from PAF and an under active thyroid. Does anybody else with these conditions also have heart failure added to their list?
Am starting to feel very breathless, tired and retaining fluid. Don’t know which of the above two symptoms to blame or if heart failure will be added to the list when I finally see an EP.
Di
Just wondering what meds you are on as some can cause breathlessness?
Are you having treatment for your thyroid problem as that will help AF to settle
Thank you for responding so quickly. To date I take 125 of Levothyroxine, Frusemide, Nebivolol, Felodipine and a Atorvastatin
D
I have the same - but without the heart failure although I have had a ‘silent’ heart attack in the past which showed up on the MRI scan. Tired and breathless I can identify with, but not fluid retention. I put the former down to the meds and intermittent Af. I am having an echocardiogram later this month to check whether there have been any further disturbance or changes to the heart. If there have been any changes to your condition my advise would be to inform your GP and get some tests done ASAP.
Have just had an echocardiogram and a 72 hour monitor, will see EP 13/2,just wondering if hew will add anything else into mix
Hi Hylda - I have the same but without the fluid retention i.e. AF and I'm hypothyroid. My thyroid was damaged by Amiodarone. Once after a cardioversion the nurse said to me oh you have first or third degree heart failure, now she could have said first degree heart block but my daughter assured me they wouldn't have said that. No one else has ever mentioned it since and stupid me didn't ask what that meant. You can see I'm confused as to just what was said!!! I must look in my diary and see if I wrote it there.
Scatty Jean
Want to be ready to ask questions when I see EP. Trouble is we have a Motorhome and I am only insured to travel abroad as long as haven’t been told I can’t.
Meant to say I take 75 mcg s thyroxine, nebivol and Apixaban. Have you had your thyroid checked recently...
Was dropped to 100 after a quick dash to A&E this time last year when TSH was 0.05. Slowly got worse and finally found GP who put it back up again to 125 5 weeks ago. Cardiologist said not to worry if TSH went very low.
Forgot to say earlier also take Dabigatran
Do you have a copy of your most recent thyroid blood tests with the reference ranges for each one? Your GP can supply this. It is your right to have it, so do not be fobbed off. Then post them on the Thyroid UK site of Healthunlocked and members will advise you. Fluid retention is definitely a symptom of low thyroid and it is the most poorly treated disease in U.K. with many doctors being thoroughly confused about the various blood tests and setting patients on the wrong medication or the wrong dose. In UK, you mostly need to be your own thyroid doctor.
Hi I have had AF for 25 years and 5 years ago was told I had heart failure too, syptoms were breathlessnesss and tiredness, but not water retention, they changed my medication and my symptoms improved a lot, hoping meds will keep it under control as long as possible.
Get yourself on a Co Q10 and megnesium supplement. Really good for protecting your heart/cardiovascular system. My svt has relaxed since started on the Co Q10. I had shortness of breath too from the medication (flecainide and bisoprolol), I do deep breathing exercises, which work wonderfully.
My heart failure has been treated since the mid 90's with Co Q10 as I wasn't prescribed ACE inhibitors until last year. They haven't improved things at all so am wanting to stop them as I don't see sudden drops in blood pressure and blurred vision as things I want in my life.
Hi - I have AF and HF. The fluid retention will be the HF - Initially I had severe fluid retention due to HF and was in hospital for 12 days to sort it out. I was given high doses of Flurosemide initially to get rid of the fluid. It is more or less under control now so I only take fluroseimide when there is some fluid retention which isn't too often, I see that you take this daily, I only take it when needed as it does cause my heart rate to go up. I also take Ramipril for the HF I think it is meant to help the heart stronger. The breathlessness may just be the AF - I see that you are on Nebivolol which is often given to people with asthma or chest problems rather than Bisoprolol (Biso can cause breathlessness) so probably not that that causes your breathlessness. Perhaps when you see your EP he could review your meds and your thyroid problems as well.
Cassie
I have PAF and can relate to your symptoms as I also get breathless, tiredness and fluid retention. The fluid retention is intermittent though not all the time. I only notice it when my wedding ring feels tighter than normal to take off/put on and when I wiggle my toes the tops of my feet are puffy so I cannot see the bones/tendons moving. I've noticed its worse when I am hot. I take Rivaroxaban and am going through the menopause so I don't suppose the hot flushes help! As far as I am aware I don't have any thyroid issues.
Many thanks to you all for replying I was on Bisoprolol but changed to Nebivolol recently. The doctor who recently upped my Levothyroxine by 25 didn’t bother with a blood test as my last one was a TSH of 1 but drawn at 2pm in the afternoon. Only thing tested. I take Q10 and Magnificent but have to be careful as Dabigatran reacts with a lot of things.
D
Whoops - Magnesium
I have had heart failure since the early 80's when my prognosis was most likely I wouldn't still be here after 20 years maximum. I also have auto-immune thyroiditis which means my thyroid hormone levels cannot be controlled by thyroxine. I was started on Ramipril last summer but they are the only heart meds I have tried.
I am currently on 175mcg thyroxine
Hello. you are one of the lucky patients with heart failure I reckon. Usually patients with this condition take a " cocktail " of medicine,. my husband has to. He was diagnosed with it 7 years ago and takes ACE inhibitor( Ramipril ) , anti blood pressure tablets, anti cholesterol tablets, Furosemide, Bisoprolol ( beta blocker ) and unfortunately he has got to take 2 lots of anti coagulants since the last 2 years and had a pacemaker fitted also last year! Like he was told by his GP some of his medications could make him diabetic and indeed he has become diabetic in the last 2 years also so that's another pill to digest.On the positive side he has no thyroid problems , touch wood. Regards. Marie.
I was actually offered a whole bunch of meds (cholesterol tabs and beta blockers) and decided against them as I have controlled the heart failure using alternative methods. Not lucky, just chose a different route
Ask your EP an out dofetilide. Being in afib reduced your cardiac ouputand puts you into CHF. The dofetilide has resulted in a year of NSR and no CHF.oObviously your thyroid levels should be optimized
Hi, I also have heart failure, af and an under active thyroid. It's a wonderful life isn't it?!?, with my heart failure, I retain more fluid than a camel, and my breathing sounds like darth Vader!
My thyroid doctor won't increase my levothyroxine too quickly because of making my heart beat faster. He does work with the cardiologists asking his opinion before increasing the medication.
I have now had a two lead pacemaker and defibrillator inserted in October last year (after a normal pace and ablate proceedure the year before) which helps the heart to beat more strongly, pumping blood properly?
I take 120 mg of frusomide twice a day, aswell as spirolactone once a day and minoxodone when required as diuretics so the toilet is my best friend, and every so often I have IV frusomide to help the fluid, but it doesn't help my kidney failure as it makes their function drop.
It all sounds like a lot, but it's positive thinking (and my grandchildren) that keeps me going! I'm sure you'll be fine and won't let these things get you down. Life is too short, so make the most of it!
Big hugs and wishing you loads of luck.
Regards
Sharon
Thanks Sharon. I’m at the great-grandchildren stage although I look 7 months pregnant myself at times. My GP will only let me take 40 mg of Frusemide for 4days at a time, then it’s back to 20.
Cardiologist wanted me to see a urologist, surgery ignored the letter so I had to throw my rattle out of the pram
Di
Hi Hylda, bless you, it certainly sounds like you're going through the works! It all happened suddenly to me and all conditions were diagnosed at the same time, or within the initial diagnosing stage! I've had a cocktail of drugs (including Amiodarone which I wasn't happy about because I like the sun), Bisoprolol which was at the maximum dose age but after pacemaker proceedure only 7.5 mg a day and others aswell.
I'm now feeling like I just want to be left alone to enjoy my life and not be like a specimen jar, being poked and prodded and bits taken out and others added, taking the medication and hoping all will be okay!
I truly hope that whatever the outcome of your diagnosis is that the 'baby' will be fit and healthy!!! By that I mean that they find out why you look pregnant and that it's not too serious.
Please keep me up to date, and I wish you well.
Sharon
Hylda, I have been on thyroid before my A-fib was discovered . I also have been on Lasix and Chlorthalidone , and potassium before my a-fib was discovered . I was diagnosed with congestive heart failure before my A-fib was discovered too. I take these meds every day . My legs still swell some but not as bad as they have in the past . Now I am starting the task of losing 70 pounds (6 stone) in England measurement . I wear compression knee highs to help . I get short winded at times and it at last a few minutes that's just sitting still. If I go up 10 stairs I get winded . If you are retaining water consult your doctor about a water pill if you haven't already . This is just my opinion ,but I don't think we can blame any one thing about what's going on in our bodies . While I may have not helped my situation I do know that some of my stuff is hereditary and that included my heart . Tell all these things to your doctor and keep the faith ,try not to let it worry you that will not be good to worry . Concerned yes ,worry NO. I know , easier said than done .Wishing you well don't give up the fight and when you need someone to talk to, here we all are .This is a good place to be
Thanks 1jet ear I am currently sporting a very fetching pair of striped compression socks from America. Our NHS ones make you look as if you have artificial legs.
Di
Yes,I am exactly the same. Unfortunately I cannot take levothyroxine as it sets off PAF
I do not take any medication due to bad side effects of everything I have been prescribed
It is a long list!
I went to a nutritionist who put me on a gluten free diet which has helped a bit with overall health problems
Hi Im the same..I also have sleep apnea..I am breathless on exertion or when the AF kicks in above 130 bpm and I can only drink 1.5 lt of fluid a day and take 9 different meds a day..yes I do rattle when I walk!!!.. how long have you had the diagnosis?
About 5 years and then only by chance. I finally get to see an EP next week. This morning was puffing just putting on my compression socks.
why has it taken so long to see an EP ?
Just given the pills and left to my own devices. Only seeing one now because a locum sent me to see a cardiologist and she was horrified I hadn’t had any tests
Just given the pills and left to my own devices. Only seeing one now because a locum sent me to see a cardiologist and she was horrified I hadn’t had any tests
have you not seen anyone for follow up appointments?
No. As I say left to own devices. Have just had echocardiogram and 72 hour monitor, now I have to see what next week brings.
Heart failure and Entresto anyone?
Heart failure and permanent 
Heart Failure and hip replacement?
Af and heart failure 
