Afraid to close my eyes ๐Ÿ˜

Hello everyone! As my post title says it's 4am and am yet to go to sleep for fear of not waking again.

My history is that for the past 10 years I have been battling hypothyroidism. ..and despite trying all combinations of treatments have never felt well. Along the way a few minor heart issues usually resolved with dosage changes etc. Recently I now take liothyronine (t3) only prescribed and monitored by an endocrinologist. It has been going OK on around 50mcg...my bloods the best they've been .....but last December I noticed heart pals gradually getting worse and mentioned to endo who requested an 24 hr ecg. I've waited until 2 weeks ago and after harassment by my gp we finally got a result. I remember during the ecg day that I didn't really feel much except for a raging tachycardia after a meal...which settled after 20 min or so. The ecg showed I was getting arrhythmia in my sleep and have been referred to a cardiologist and to have a heart scan . I've had a scan before due to tachycardia and breathlessness on exertion ...structurally the scan was normal....tachycardia blamed on thyroid treatment. ..no action.

However since Dec the arrhythmia is much worse hence gp visit.....she was able to feel the brady's and ectopics via my pulse. The arrythmia is random. Sometimes my heart rate feels normal and I can't find a cause or pattern to it. It is worse at night and wakes me up. I didn't have much guidance from my gp on how to behave whilst waiting for referral appointment's. Should I still be at work? Resting? Highly concerned? When should I present at An E? Do I sit out the episodes which are now going on for hours ? Do I keep taking my thyroid meds as normal ?? I have become very afraid that one night I just will not wake up at all.

I would very much appreciate any advice and thank you in advance ๐Ÿ˜ Karen

10 Replies

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  • So sorry for you I think we have all had that feeling waiting to find out what is wrong is the hardest part try not to stress sure you wl get sorted soon just remember to stand up for your self xx

  • Your cardiac symptoms sound like paroxysmal atrial fibrillation (PAF), which should be confirmed by an ECG taken when you are experiencing symptoms. Mine was identified when I summoned help at 5 a.m. because the gp never saw me with an episode because they were at night. I was visited promptly by a Paramedic who confirmed I needed to go to A&E, where I was hooked up to assorted machines and a diagnosis arrived at. It's important to get this asap so that you can be treated for the PAF which can lead to stroke if left untreated . So don't hesitate to call the emergency services if you have a major episode at night. If you get an episode during the day, your gp practice may have an ECG machine which could take a reading, even if you have no appointment. Apart from treatment for stroke risk, it is said that PAF is not risky on its own, unless accompanied by other issues like diabetes, other heart disease, obesity, etc. So don't panic, but do push for proper diagnosis asap.

  • I have been on thyroid medicine for years, which has solved that problem, but it didn't stop the progression of AF from occasional to full time. For that, the only "cure" has been the two ablations. AF free for three years now. You should be on an anticoagulant, however, to help prevent stroke. I'm surprised the doc didn't insist. You should see an EP (electro physiologist), a cardiologist who specializes in heart rhythm issues. That's critical, as GPs just don't usually have the specific knowledge required. As mentioned, AF by itself isn't fatal but should definitely be examined and treated. Hie thee to a specialist.

  • Thank you....would a small amount of aspirin do the trick until I see the specialist?

  • No, completely different principle.

  • Thank u...can you tell me about ablation...it sounds horrific ๐Ÿ˜”

  • It's not really bad at all. If you are in UK, and depending on your individual AF problem you may be offered something different than I experienced. It's not surgery, just a procedure, but you are "out" for three to five hours. I went home the same evening after the second one, but usually you stay overnight, just to monitor small insertion wounds and recovery. So worth it! Waking up in normal sinus rhythm was heaven! No flecainide later was icing on the cake.

  • Hi Karen. I am just replying because I feel for you so much. I have been through all of the same emotions as you describe. You will be FINE. I also had severe thyroid problems many years ago due to Graves disease. I was overactive. And had palps for 6 years before I was properly investigated as it was always explained away as being my thyroid dysfunction. Nowadays.. My thyroid is perfect:) but I do have AF and atrial flutter and atrial tachycardia. I also get symptoms mostly in bed when lying down and after eating. Because my arrhythmias are vagally mediated. I have had 2 echos over the last 3,years and am awaiting a third prior to my next (and 2nd) ablation. My echos have all been normal even though I have several hours of symptoms per day of tachycardia. I am not suggesting that you're exactly the same as me since we are all unique and you still have to be investigated. But what I am saying is that the fear and worry when you don't know what is going on is worse than the actual facts. Also... If you do have AF you are only put in an anti coagulant if your stroke risk is deemed high ie. If you have other risk factors for stroke along with AF. So listen.. Rest and get good sleep. You are safe and nothing sinister has happened so far with these symptoms. If you feel really unwell with them then go to A and E. But try and not get unwell with worry as it is so much more difficult to deal with fearful thoughts than it is to deal with physical symptoms of arrhythmias in my experience. Sending you positive thoughts and a big cyber hug! X

  • Hi Karen. What you describe does sound like PAF. I really feel for you as it took a year for me to get a diagnosis but as soon as I saw a cardiologist, he knew what was wrong. Like you, I had never been so scared in my life! I had a 7 day monitor which picked up the Arrythmia as the basic ECG never did. I'm not doing well with the drug side effects so am hoping to persuade him to refer me for an ablation. Lots of lovely people on this site have been very supportive.

    Try not to worry too much as stress doesn't help. My cardiologist was very reassuring and said I will not have a cardiac arrest! Good luck and big hugs x

  • Thank you all of you ....I feel very reassured and so glad I joined the group ๐Ÿ˜Š

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