I’m desperate due to near constant ect... - Arrhythmia Alliance

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I’m desperate due to near constant ectopics

HashisKate profile image

Another desperate post from me. I have posted in multiple areas in the last two weeks, just desperate for help or reassurance.

I have had ectopics to some degree all of my adult life. Usually just the flip flops and then thuds. Worse at obvious times like when ill, stressed or when I was medicated for thyroid disease. I have always tolerated these fairly well and didn’t worry about them.

6 months ago I woke up in the night with a kings thirst, gasping and had a racing heart. Around 130bpm. My bp was 90/50 and felt awful. Really didn’t want to go to hospital and googled and thought perhaps I had reactive hypoglycaemia as had had a large Chinese and wine and then fallen straight to sleep. Apple juice and a banana later and I felt much better, heart rate returned to normalish, just shaken up.

This happened again a couple of months later, but this time, no matter what I tried my HR wouldn’t go down. I was anxious though so wasn’t sure if it was panic. Every time I tried to go to sleep I would jump awake with what felt like an adrenaline surge. Eventually called 111 and they sent an ambulance as it was a quiet night. Got to A&E and was firstly accused of taking cocaine and then discharged after blood tests came back normal and my heart rate came down. M HEART WAS FAST BUT NOT IRREGULAR Wasn’t told what happened just that they would write to GP & recommend a follow up.

I didn’t hear from the GP (surprise surprise) and hoped it simply wouldn’t happen again.

Fast forward to two weeks ago, I started getting multiple palpitations sat at my desk. My heart rate WAS NOT FAST, but was completely irregular and it lasted hours. This has now gone on and on for the last 2 weeks. Whenever I am at rest, eating a meal they are constant. I have the FibriCheck app, which is similar to the Kardia I gather, and the vast majority of my readings are irregular. A doctor reviews them and it’s usually bigeminy or frequent ectopics. All the time. It’s awful and I feel tired and awful because of it

My GP referred me to cardiology, but the wait in my area is 22 weeks plus. After my begging my GP I got another set of blood tests (results normal) and a 30 second ECG which showed ectopics. Again, I tried to reiterate these were constant but no one seems to care. I was given Propanalol to take as a pill in the pocket, but don’t want to take because my resting heart rate is 62 & my palpitations don’t come with a fast heart rate.

My Fitbit is giving strange night time readings regarding my breathing rate. This is calculated using heart rhythm and my breathing rate is calculated at 9 per minute (which is wrong) so I know it must also happen in my sleep too.

My life is miserable since this started, I cannot eat (I’ve lost weight), sleep and I have two young children. I am constantly worried and begging for them to stop. I have done all the right things and yet they persist.

Most posts I read people have the odd few and feel upset but mine are constant! It feels awful. The worst times are at rest. The best times are first thing in the morning & when I am on the go.

I have contacted Bupa for an idea of price to expedite a 24 hour holter & appointment but I don’t think I’ll be able to afford.

If you made it this far in my story and thank and applaud you…and also beg for help 😢😢😢

44 Replies

Two things I would do is firstly get thyroid levels tested, you are on a fairly low dose and your T3 may well be to low.

Secondly take a break from using the fibricheck as this is only increasing anxiety which in turn increases ectopics.

You could also try a small dose of Propanalol to see if it does calm things down.

If you can stretch to a private cardiology appt it might be worth the money but with anything ectopic related there's no guarantee as most Cardiologists dismiss them as normal !

HashisKate profile image
HashisKate in reply to bantam12

My recent bloods (last week) included thyroid and TSH was 0.67. I do convert poorly but I don’t see the point in another T3 test privately as I can’t get any T3 so not sure what it will achieve ☹️

I agree with you about FibriCheck. My use of this has vastly decreased. It’s really already told me what I need to know, I can feel the rest!

bantam12 profile image
bantam12 in reply to HashisKate

TSH means very little once we are on replacement, you need a T3 test done, if it's very low then that's quite possibly the cause.

Increasing your Levo may just nudge your T3 up enough to calm the ectopics.

I need my T4 level slightly over range to get my T3 high enough and I know if my T3 goes to low my ectopics increase.

Have you tried seeing an Endo ? You need one who is willing to trial you on T3 but it's not a magic cure as some people don't tolerate it.

HashisKate profile image
HashisKate in reply to bantam12

I had my Levo reduced as my TSH was suppressed 8 months ago. I did not feel well on 100mcgs daily and felt much better after. Things have been fine until this sudden outburst of ectopics.

I’m paying to see a cardiologist but I can’t pay to see a endo too, especially as I can’t self medicate and or pay privately for T3. GP won’t refer to endo I’m sure as these ectopic beats are really my only symptom, I appreciate thyroid has been the source of many of my woes but t doesn’t make sense for it to be this one. Think it’ll have to be a last resort to investigate

bantam12 profile image
bantam12 in reply to HashisKate

I appreciate the dilemma (been there myself !) but if it is thyroid related then going up the cardiology route may get you nowhere.

I'd be interested to hear who you end up seeing and how you get on as I live near Bristol, I've previously seen an EP at the BRI but reverted back to my local Cardiologist.

HashisKate profile image
HashisKate in reply to bantam12

I can DM you who I’ve chosen if you like and let you know. It’s a consultant who works at Bristol heart institute NHS, cardiologist and EP, specialises in complex arrhythmia etc etc but unlike her counterparts on Bupa website, she advertises special interest in investigating palpitations, faints and funny turns. I chose her based on that hoping that she can help starting from scratch. She also has 20 years experience. I’m uncertain how private healthcare works but hope I can transfer to an NHS list after initial consultation, presumably for a holter monitor as I think that’s about £350 privately 😱.

bantam12 profile image
bantam12 in reply to HashisKate

Is it Dr A N ? looks promising !

HashisKate profile image
HashisKate in reply to bantam12

Yes it is! The only problem is she doesn’t practice out of Southmead Hospital (from what I can see). That’s my local hospital as I’m NBT. The NBT cardiologists don’t look as good though.

bantam12 profile image
bantam12 in reply to HashisKate

If you are seeing her privately it would be at The Glen, they don't mix private and NHS.

HashisKate profile image
HashisKate in reply to bantam12

Yes, but I believe they can then switch you to the NHS list for any treatments. (They did this with my daughter). Not sure how it would work after the initial consultation as I’m NBT and she appears to work out of UHB.

bantam12 profile image
bantam12 in reply to HashisKate

Some will organise tests on the NHS( or ask your GP to organise it) but some won't do it and switching to NHS doesn't mean you jump the queue so the wait can be just as long.

Im currently seeing a private consultant and any tests or scans have to be paid for if I want them done quickly, if I want to revert to seeing her on the NHS I have to join everyone else on her extremely long wait list !

Once you start down the private route it's easy to spend a lot of money, just because we are desperate for answers and don't want to wait.

HashisKate profile image
HashisKate in reply to bantam12

Yes I understand that I’ll have to wait, but at the moment I’d have to wait for 22 weeks just for an initial consultation that I’m planning on paying for privately. Hopefully if I can cut the 22 weeks bit, I can at least speak to someone who knows what they’re talking about and then skip that bit and join the long queue for tests after (hopefully) being reassured. I can imagine it’s easy to spend lots of money. In an ideal world, I’d have a consultation, ECG, Echo & 24 hour ECG tomorrow, but I’m working with very finite funds so I understand it’s just going to happen 😔

I am concerned about the sudden onset and almost constant frequency. It hasn’t crept up or coinciding with anything else clinically, so to me, this feels really urgent. I am now also getting a mild stabbing discomfort / pain when I take a deep breath. Also a need to cough. But all I can do now is sit and wait for what tomorrow brings.

I have just taken a propanalol, which I didn’t want to do, albeit only half the 40mg tablet prescribed. I accept that I can’t say it doesn’t work or makes me worse until I’ve tried it.

I’m desperate, worried and beside myself. Getting on with house work and looking after children as best I can but it’s a constant worry and I’m very fatigued. Hopefully this propanalol, a dose of fireworks & the hope that perhaps I can see someone privately sooner rather than later will help.

Hi When I went into the Spire this week for an ablation for ectopics privately ( because was told waiting list was over a year at Heart Institute Bristol) my cardiologist also had NHS patients on the list so they are doing waiting list initiatives there. It shouldn’t matter if you’re NBT as the HI is a regional unit. I think your plan is right. Go for a private consultation and then any treatment on NHS. You will need to make it clear at initial consultation that you can’t pay for more than a face to face consultation (£220) because cardiologist would normally recommend ECG on holter monitor and possibly an echo to check your heart out both of which are costly. Other alternative to persuade your GP to get you an urgent referral to HI in view of the misery this is causing you. By the way my ablation was cancelled due to no ectopics at the time🙄I normally have 22%! Good luck and hope things resolve for youx

Please can I talk to you more? Not only are you regionally experienced but you have a high burden. Can I message you at all? I’m desperate for someone to talk to that is in the same boat. X

HashisKate profile image
HashisKate in reply to bantam12

I must admit sometimes I’ve wondered whether I’ve got a bad batch of thyroid meds this month, but it’s the same as I always have. Started just after my new pack though. Think it’s a stretch, but I’m so desperate for there to be a quick and simple way out of this!

bantam12 profile image
bantam12 in reply to HashisKate

Are you still taking Teva ? many people don't tolerate them and even if you've been on them for years it's possible they now don't agree with you. A dodgy batch is also a possibility, ask your GP to issue another prescription and check the batch numbers.

HashisKate profile image
HashisKate in reply to bantam12

I’ve always been on Teva. I asked before to try something else and the GP said no, she just prescribes Levo & I get whatever I get ☹️

bantam12 profile image
bantam12 in reply to HashisKate

Your GP is being unhelpful ! You could talk to the Pharmacist and ask them to supply a different brand.

HashisKate profile image
HashisKate in reply to bantam12

My pharmacist is a lovely man, I’ll approach him next time and ask if they have a different brand hanging around and whether he’ll humour me.

bantam12 profile image
bantam12 in reply to HashisKate

Worth a try, it is down to the Pharmacy as to which brands they supply unless specifically stated which one on the prescription.Good luck 🤞

So so sorry to hear you are struggling like this. The key is in finding a first class medic to take your case seriously and set about both getting to the bottom of your problem and finding ways to mediate it and get it under control as a priority.

Clearly you are extremely stressed and distressed and who wouldn't be in these circumstances. I have been in similar situations and the lack of a clear route out of this with a cohesive team in your corner who you can feel confident in only raises the concern which in turn exacerbates your symptoms. You need some calm and support from medics in whom you can trust.

Dependent on where you live and the availability of good cardiologists in your area i would (and did) seek out a particular medic who you feel may be right for you. Find out if they do private consultations then ring their secretary and see how much a consultation would cost. Getting in front of the right person is key to your journey. Armed with this you could then ask your GP for a private referral. Yes i know it would cost for a one off private appointment but given your situation unless you are destitute what better way to use money than getting your health on track. Do you have family who may chip in to help pay for it.

What about your thyroid, that can cause so many issues, ensure things are on track there given its an issue for you generally. Could be key in all of this.

Until you get in front of a good team your anxiety will exacerbate still further your symptoms will follow suit. Please dont sit on this problem struggling still further, take action tomorrow, you deserve answers and treatment. Best wishes. Ps: you will get sorted, persist please, sending a big cyber hug your way.

HashisKate profile image
HashisKate in reply to meadfoot

Thank you so much for your reply. I live in Bristol so plenty of cardiologists & EPs. I have picked a consultant who is both & lists a special interest in palpitations and funny turns. So looks as if she won’t dismiss me straight off the bat, especially as I’m paying for it! I’m going to ring tomorrow.

I just need a way out of this. I don’t think the people fobbing me off have walked a mile in my shoes 😢

meadfoot profile image
meadfoot in reply to HashisKate

Thats good, all the best to get this sorted once and for all.

i get them all day and night , they wake me up every time every night. i get up to 70 I can count a day- Nothing helps. No medication im on so far anyway.

I don't know what to do, im just as desperate.

My Dr and the ER don't seem to care- one Dr. told me " We don't treat those".

Another had "no answer". I do have a degree of coronary artery disease but they dont think its causing these extra beats.

I take beta blockers-- they don't help even at 50 mg a day extended release.

I take benzos they have stopped working. I do have very low non anemic low iron.

but im agoraphobic and cant leave home very often to get treatment.

Im fit to be tied-- your not alone.

HashisKate profile image
HashisKate in reply to MFM008

Sorry you’re also feeling this way, it’s awful. I can’t count mine as I often have bigeminy which means every other beat is ectopic and I feel every one of them. I’ve got around a 4-6 month wait to see anyone about them, so I don’t know if there’s anything wrong with my heart yet, but may pay for a private consultation. I really hope yours stop soon or that you find something that can help. Wish you all the best

Have you been tested for sleep apnea? Apparently there’s a link between this and arrhythmia. X

HashisKate profile image
HashisKate in reply to Ewloe

No I haven’t, but overnight Fitbit data doesn’t suggest this and my husband said this isn’t the case. I don’t have big tonsils and I’m not overweight so would be unlikely…I’ve got an oxygen monitor thing on Fitbit and levels always 96-98%. Not knowing what suddenly caused it is one of the most distressing bits I think. Thanks for taking the time to reply

Kam73 profile image
Kam73 in reply to HashisKate

Not all sleep apnea is cause by large tonsils or a fat neck. It is really insulting to those of us who have sleep apnea that is not cause by big tonsils or a fat neck.

As for your arrhythmia 70 a day really isn’t a lot. They are concerning but at that number you would not qualify for an ablation. Before I had an ablation I was having 14,000 a day. I am now on Flecinaide that keep the “small number of PVCs” under control.

HashisKate profile image
HashisKate in reply to Kam73

Hi there. No offence was intended, but obstructive sleep apnea is largely caused by an obstruction, which tends to be one of those things. I also didn’t use the phrase ‘fat neck’, - those were your words, not mine. My daughter had surgery for OSA so I’m fairly knowledgeable on the subject. There is nothing causing an obstruction for me, and with my Fitbit data, I can safely say I don’t suffer with either obstructive or central sleep apnea.

Secondly, I haven’t said anywhere that I suffer with 70 a day, so I’m not sure where you’ve read that? Mine have been almost constant for 2 weeks, but I haven’t had a holter monitor so could not say with a certainty, exactly how many I have been suffering with.

MFM008 profile image
MFM008 in reply to Kam73

Kam it is a big deal when they are your trigger for panic and it disrupts every minute of every day of your life-

I have suffered with ectopic since around sixteen. No one has been much help ever since. They even sent me to see a psychiatrist back in the 70s! Mostly they are tolerable but during times of stress they can suddenly go wild and I have had bursts of irregularity that have lasted almost an hour of racing with extra/missing beat every time. Sometimes it feels like the beats meet in one gigantic explosion that will crack my ribs. I haven’t found and answer - magnesium citrate seems to have helped a bit - although I tell myself after every bad episode ‘You’re still here’. While your condition sounds much worse than mine, I honestly believe that state of mind - on top of all the other sensible things you’re already going: watching weight, diet etc. - is one of the key factors. For me anyway. It was surprising for me that when I adopted the attitude ‘do your worst, ectopics’, they never seemed quite so bad ever again. We’re all different and I hope you find a solution/professional that gives you some peace of mind and a better life. I wish you well.

Thank you. You are so right that being so anxious about them definitely perpetuates the cycle. I was reassured at around aged 20 and never worried much since except to find them annoying…but this last couple of weeks have been intolerable. I am also taking supplements, and as I’m so uncomfortable with them every time I sit down I’ve also lost weight 😬 I took propanalol yesterday but hated it. Made my resting heart rate around 52 and I felt weird and sick, Thanks for replying, glad you’re ‘still here’ despite your episodes 😊 all the best.

Roemheld Syndrome?

HashisKate profile image
HashisKate in reply to Jonp

I have thought of that as I feel I’ve started suffering with reflux. I’ve barely eaten since all this started though, so would expect an improvement but I’ve not found this to be the case

Jonp profile image
Jonp in reply to HashisKate

I have had lots of ectopics, up to 25,000 a day, right through the night. Can't explain all of them but I know that many are caused by swallowed air (fizzy drinks, sipping hot drinks with air to cool, talking a lot, gulping food). I am more careful now, burp regularly to release air before it passes out of the stomach and massage my abdomen to speed up transit of gas. Apparently, it can take less than 30 mins from swallowing air to passing it. Of course some can get stuck on the way putting pressure on the heart and the vagus nerve. For me, ectopics are purely a physical fault in my gut, a bit like hiccups. Annoying but not dangerous. Hope this helps.

Look at Barts private consultation. Buy Kardia to get evidence of what’s happening.

I'm sorry to hear how you are feeling. Please don't hesitate to contact Arrhythmia Alliance for support & information should you need it: info@heartrhythmalliance.org / 01789 867 501

I can only offer you prayers for healing. I've been where you are at and it's horrible.

Thank you

TracyAdmin profile image

I am sorry to hear of your recent experiences, please do not hesitate to contact Arrhythmia Alliance if you need any support or information on info@heartrhythmalliance.org

You have my sympathy as I too suffer from ectopics.My cv on Sat got me back to sinus but my kardia reading shows multiple atrial ectopics.This is what flipped me into afib in Jan.Make a nuisance of yourself to get a 5 day event monitor so gp can see them .I filled mine up in 1 day as like you get loads.I have tried loads of meds.Digoxin worked really well even at low dose but it made my eyes blurry .Bisoprolol or carvedilol I couldn't tolerate at all.Verapimil is OK but doesn't really effect the ectopics.Hopefully someone on here will help.Everyone says deep breathing which I have tried multiple times also drinking water,listening to meditation tapes.They seem to kick off and stop when they want to.Very best wishes.

HashisKate profile image
HashisKate in reply to ETHEL103

Thanks I’ve tried almost everything too. I couldn’t tolerate beta blockers as my heart rate is too low, and my GP said she wouldn’t expedite my referral unless I collapsed in which case it would be led by A&E and not her. So for me it’s just a waiting game. Sorry to hear you’re suffering too, I really hope we find a way to combat them in the end x

Try Magnesium,

Already trying it 🤞🏻🤞🏻🤞🏻

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