My heart rate can go from below 60 to over 130 almost instantly. And for no obvious reason - even when sitting and feeling relaxed. Then drop back. On an ECG I've seen it reach 180 yet me be blissfully unaware of any changes in how I felt. It seems to be regarded as a form of atrial fibrillation.
I wanted to get a new smart watch that included an ECG but thought better of it; I'd only get hyperfocused on it.
How strange! I certainly didn't feel any different, if I'd not seen my watch I'd have never known.
It's just strange; I've never seen it go that high before not even when I was undiagnosed and running! And it was just a stroll round a field. But disconcerting!
I've got an appointment with a new endo mid May. I was hoping to hang on until then without a dose increase but I've had a total emotional meltdown this morning so maybe not...!
If you have been fairly sedentary for a while then something as simple as deconditioning can do that. There is also a condition called Postural Orthostatic Tachycardia Syndrome where you heart rate raises 30 beats per minutes on standing.
I don't think it's POTS; although having checked my HR did increase by 20bpm on rising but I'm 6' tall so I expect my heart has to really ratchet it up to get the blood to my head. 🤣
This has turned into another one of my long replies. Apologies.
I have had cause to think about this a lot recently. Pre hypothyroid (long before) diagnosis, about 23 years ago, I noticed my pulse was 80+. This was high for me and I did not like it. Since starting my levo it sits about 60 which definitely took the strain off. I know that’s too low (for living properly) but it’s often an accompaniment to hypothyroidism. I used to be very fit but that was a long time ago. I find that just going upstairs slowly, it can easily go to about 130. I would not at all be bothered by that because I know to get the body going, the heart rate does have to increase. However I have pulsatile tinnitus so I know exactly what my heart is doing at any given time. It’s a bit of a pain really. This was especially disconcerting when I was doing T3. The heart (my heart) has not been working properly for a long time, even although I kept up with my exercise regime (struggling for years) until some time after diagnosis. So far after all my ‘panic’ about T3, I am being assured by the medics that I have palpitations and not any form of atrial fibrillation (still got another tests though) and that palpitations (whilst horrible) are not dangerous - unless you already have a heart condition. I do have a heart condition but I am certain that has been purely brought about by being hypothyroid. I am as sure as I can be that this jumping about of heart rate is directly caused by hypothyroidism itself! T3 I think was making my heart go faster in a way that I could not cope with because of what I was told, read about, could hear in my ears etc. However along with the recent news that my whole heart is now working (previously I was told the bottom part was not working, after an ultrasound and put down to the heart attack many years ago) I was both shocked and pleased!! I was told it is possible for the heart to recover post heart attack. My thinking is the levo has done great work but the T3 is what it really needs now - with extreme caution. I am happier now to know that the levo relaxed my heart enough (keeping the heart rate low but stronger) to have likely helped heal it but it has not provided enough to finish the job.
Look I have just explained my situation to hopefully help alleviate any concerns you might have about rapid changes in heart rate. It seems to me it goes with the territory.
I am so pleased to hear your whole heart is working again! That's amazing news.
My heart rate was always very low, in the low 50s, while undiagnosed and I've seen that steadily increase over the last few years to 64ish which is welcome!
I was just a bit unnerved by such a rapid increase with barely any exertion! As Jaydee said though, it's probably just deconditioning as I've been pretty sedentary for the last 3 years. Hopefully it will improve as my dose changes and I'm able to be more consistently active.
Off course you were unnerved by such a rapid increase. Yup. Definitely the sedentary and deconditioning angle is extremely important. I kind of gave up on my exercise, to allow me to do other things. Make food! Be awake! I have done very little this last year, (two years since diagnosis) to allow me to concentrate on observing, reading, learning, resting and attempting to move up my dosage. However, recently I have experienced quite a paradigm shift. I am accepting my ‘disability’ - for the moment. I could not before. I still hope it will be short term (Ha!) as opposed to forever but I must first accept it to have some sort of life, is my personal conclusion. I have decided I am now working with whatever I have got/learned etc. Thyroid medication (when it’s not correct) has a very destabilising influence. This, on top of everything the condition throws at us. Medics seem to be unaware of this in any rounded way. Their perception of who we are is shocking and I think actually contributes hugely to our illness. Thank goodness for the forum.
Yes it’s not fair and to add insult to injury our treatment is crap. A big cry sounds like it could be positive. Every time I was replying to you I found I’d written screeds about me and yet we all have to deal with such similar shit. Since getting the diagnosis I have come to realise what a strange condition this is. I feel so much could be done to help us (mainstream) and it just is not. An interested, able and experienced Nurse Practitioner could handle this stuff. I see they have them in the U.S. now, trained for thyroid conditions. They could be here too but I have not heard. So much could be achieved by reasonable reassurance and a bit of counselling, an opening to discuss blood tests, a physio/suitable exercise class, a self help group meeting face to face etc etc. A team which did not need to go near doctors, unless deemed absolutely necessary. Initially a big cost to set up but in the fairly short term good returns. They do it for all sorts of patient groups already. Cardio e.g. Some of this could be tagged on to other patient groups. I can see that not everyone is able to be self motivated, scared, etc but 20% of the thyroid population plus a whole load of others who don’t complain but are suffering, it really could improve the outlook for so many. However I still feel there would be a need for the forum because anything NHS will most likely have its limitations. If we do not start out panicking about our health, the way the medics presently deal with us, we soon become panicky. It’s virtually inevitable due to their lack of knowledge about the true nature of the condition.
I am Hyperthyroid with Nodules. I am going through the same. My heart rate on a simple walk will rise quite quicklly. I have an appointment next week (waited 6 months) with local cardiology based at a doctor surgery. I think I’m having a monitor fitted for 24 hours to analyse.
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