Do I need to worry?: Hi everyone, Many... - British Heart Fou...

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Do I need to worry?

PurpleNel profile image
13 Replies

Hi everyone,

Many thanks in advance for any time, help and insight anyone can give me.

I may not be in the right place as I have no heart conditions but I am a little worried about things.

Also apologies as I am not sure how brief I can keep this as I have to give some background.

I have been rather unwell for sometime with what I now know is an autoimmune condition (Hashimotos) that has caused hypothyroidism. I was finally diagnosed for both around September last year. As of writing, this is not responding to medication as yet. I was diagnosed with CFS/ME many years ago but that has been under control until the Hashimotos began. I have been aware of heart palpitations that come and go for several months. I also have had a few bouts of very sharp chest pain that dissipates within minutes if not seconds. The first time it happened was very alarming but since I have put it all down to just one more Hashis/hypo symptom as there are so many that range from a swollen tongue and muscle and joint pains to acute brain fog and extreme nausea. My extreme fatigue is such that I am housebound on most days and even bed-bound on some.

I measure my heart rate, BP, blood oxygen and temperature on a daily basis to manage my condition and changes in medication. I had noticed that for about the past month the monitor was showing an irregular heartbeat about once a week.

Last weekend I woke up with a truly pounding heart which I measured on my home BP monitor that also shows pulse (I know this shows accurate readings). It measured a heart rate somewhere around 150bpm (might have been higher actually – can't remember exactly now) and a systolic BP of 180. Kept measuring as I thought it must be wrong but they came out the same. My normal BPM is around 65-75. Called 111 for some advice and was told to make my way to A&E. My heart rate and pulse were even higher when they measured it there and stayed very high for several hours. I had two abnormal ECG (abnormal how I don't know). Heart rate finally subsided around 8 pm when they gave me a pill of some sort. I was asked to go in the next day for further tests. This day everything seemed normal but they said they were going to fit a 24 hour monitor at some point in the near future.

Since then I have been monitoring my heart rate closely and several times a day I have palpitations and my heart rate goes over 100 but normally no higher than 130. When I go from sitting to standing it rises particularly rapidly and the palpitations increase.

I am now using the Fibricheck app which has said 'tachycardia' frequently and 'possible irregularities' on several occasions. With the slightest exertion (having a shower, dressing, walking to the toilet etc) my heart rate goes high – up to 120 odd. I seem to have a permanent ache in my chest now.

Should I be concerned? They didn't seem to be at the hospital (or at least they weren't when I went in for the second day).

Thank you so much for anything anyone can tell me.

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PurpleNel
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13 Replies
PurpleNel profile image
PurpleNel

Thank you so much for taking the time to reply. And also thank you for not just dismissing my concerns as silly or overreacting. So, I will wait and see what this 24 hr monitor shows up - if anything.

PurpleNel profile image
PurpleNel

Thank you. 'Reasonable time' at the moment is so hard to measure with the current state of the NHS isn't it. Perhaps if I've heard nothing in a month I will chase it up.

Batty55 profile image
Batty55 in reply to PurpleNel

Please - just dial 999.

PurpleNel profile image
PurpleNel in reply to Batty55

I don't like to make a fuss. And the last thing the hospital told me was that if it happened again to make a cup of tea and massage my chest.

Batty55 profile image
Batty55 in reply to PurpleNel

Please - you are not making a fuss. I waited - nearly to my cost. I was told that the ambulance service would rather attend - and leave with you - or with you reassured. You need to take care of you. 😘

Lupaal profile image
Lupaal in reply to PurpleNel

I waited 6 months for my monitor, symptoms like yours, I too have hypothyroidism. Then had an echo several months later and another bad attack, anyway, have been diagnosed with atrial fibrillation and am now on anti coagulants, BP meds and beta blockers ,plus my thyroxine.

PurpleNel profile image
PurpleNel in reply to Lupaal

I am so sorry to hear of your problems and hope that the medication has helped.......And 6 months - really? That seems so long....I am trying very hard not to be overly concerned but as soon as I stand up and the BPM shoot up and my heart starts thumping it is hard to ignore.

This morning I measured 65 sitting which climbed instantly to 117 when I stood to make a cup of tea.

Lupaal profile image
Lupaal in reply to PurpleNel

The beta blockers really help.

PurpleNel profile image
PurpleNel in reply to Lupaal

So glad to hear that. I think that is what they gave me the first day at the hospital and quite quickly felt pounding heart rate subside. Sounds like it might be a long journey to ever get to that point.....or find out if I even need it

Fullofheart profile image
Fullofheart

I agree you need to get this looked at. Don't be dismissed...Many of us have had to work had to be heard but its important.

You're not making a fuss, you're alerting the appropriate people to what they need to be aware of. They can't help if they font know what's going on.

Do let us know how you get on!

Best wishes 🌸

PurpleNel profile image
PurpleNel

Thank you so much to everyone for the kind words, comfort and time you have given me. It took me a long while to get my autoimmune condition diagnosed, with doctor after doctor insisting nothing was wrong even though I was watching my life sliding away from me. It was suggested several times that I was just suffering from anxiety. It has left me very nervous when dealing with medics of any kind. (Anxiety is also a new thing for me that arrived with the Hashimotos and doctors seem to love putting everything down to that, not realising it is a symptom and not the problem itself.)THANK YOU

richard_jw profile image
richard_jw

Hi Nel,I assume they did 2 blood tests in A&E for raised troponin levels which might imply a heart attack?

The actual definition of tachycardia (I believe ) is over 100 bpm at rest. I assume that is what the Fibricheck app measures.

I have found that smartphone apps and indeed my Omron BP monitor don't necessarily give an accurate Heart rate measurement if the heartbeat is very irregular. The Omron sometimes gave an error code in fact.

I had intermittent irregular heartbeat. Some time ago. (I have had an MI 18 months ago so I am acutely aware of changes in my symptoms).

They fitted a Holter monitor but in my case could not detect any significant arrhythmia. It sounds like in your case that won't be an issue. In my part of the world, (Surrey) A&E write to the GP and the GP has to fill in a form and then the hospital schedules fitting the monitor and analyses the results, forwarding the report to the GP which they did via a courier.

Lots of scope for miscommunication there which is what happened in my case. It might be worth following it up with either cardiology at the hospital or your GP.

Yes you should be concerned. Your symptoms don't seem to be resolving themselves. You seem to be plugged into your local hospital. Is the consultant responsible for you aware of these new symptoms? It might be worth phoning his/her secretary to get at least a telephone appointment

Arrhythmias by themselves are not life threatening. I believe many people have irregular heart beats. In your case I really think you need to follow it up. Don't assume the NHS will work as well as we would all like it to

Good luck

PurpleNel profile image
PurpleNel in reply to richard_jw

Hi richard_jw - thank you so much for your time. They did do tests to rule out heart attack. They also did tests (they said) to rule out anything sinister overall (I assume they mean heart attack and stroke?)It is interesting what you say re the errors on the monitor if there are frequent heart irregularities. My BP monitor frequently shows an error message and I have never understood why. It can sometimes be just after I have taken a reading and the cuff is still in place. Likewise, the phone app says error, try again - perhaps my palpitations make me shake too much.

I honestly don't know if I do have any arrhythmias and if so I don't think they are all the time because my BP monitor only shows one up every few days. And I don't know how much I can trust the equipment anyway with regard to that. Perhaps as and when I get this 24 hour monitor it will also show nothing. There seems to be room for error and misdiagnosis everywhere and even with the lines of communication like in your case.

I don't really know who to contact at the hospital. When they asked me to come in the following day after the abnormal ECGs I ended up somewhere called the emergency day clinic or something. I think they were general doctors.

One thing I have suddenly remembered (there was so much happening and said and I took so little in over 2 long days - I suffer from severe fatigue, nausea and brain fog all the time) is that one doctor used a stethoscope on my chest and said she detected a 'flutter' but said it was probably nothing to be concerned about. Is that the same as an arrhythmia? (Sorry - this is all so new to me).

I think if I have heard nothing in a few weeks and this rapid bpm rise on standing continues I will start off with my GP.

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