2 months & still waiting for cardiologist

[MaggieMaybe]

After a 24 hour ECG ordered by my GP in January I was told I had SVT and prescribed bisoprolol, which helped a little at first but had some unpleasant side-effects. A month later I returned and the dose was increased as I still had palpitations. A month after that it was reduced again due to side-effects. In the last week palpitations have increased in length and frequency. At my last GP appointment I asked if there was any information on where the arrhythmia was coming from and was told it was probably from the atrium. I was prescribed eliquis but the GP phoned me a few hours later to say I shouldn't take them because of my age (late 60s).

I've been waiting since I was told I had SVT to see a cardiologist and probably have an echo, but I've been told I probably will have to wait another 2 months.

There have been times when I've thought of going to A&E but I live alone, have no relatives, my last friend passed away from heart failure in February (5 days before another hospital test, it took him 6 months to have an echo and diagnosis) and my only companion is a cat, I know nobody who would care for her if I was in hospital.

I think I have Afib and whatever my condition is severely restricting my life. The bisoprolol doesn't seem to be helping much now and I have a history of bad side-effects from beta blockers (why I wasn't given propranolol). I'm starting to despair of ever getting reasonably well and sometimes wonder if, by the time I see a consultant, too much damage will have been done. If I had the money I'd go private but that's out of the question.

I apologise for venting here, but this is really getting me down.

[Pam296]

Hi Maggie. Really sorry to hear about your issues. I've only just been diagnosed with Paroxysmal Atrial Fibrillation myself, following a year of trying to get my GP to take me seriously. I ended up paying to see a consultant as I was told there would be a 6 month wait. Not good when you don't feel well. I'm surprised about the Eliquis, though, as I'm in my 60s and take it with no issues. Did they prescribe you another blood thinner? Perhaps it would be worth speaking to the consultant's secretary and asking if they keep a list of people who can take short notice cancellations.

[MaggieMaybe in reply to Pam296]

Hi Pam. You're lucky that you have a real diagnosis compared to my 'SVT' with no cause known yet'.

I'd had 2 years of feeling ill before I had palpitations. Then a normal ECG showed nothing but a couple of months later I saw a GP who at least ordered the 24 hour test.

I'm on no blood thinner but also I haven't ben diagnosed with Afib, I just suspect that is the cause. I am concerned about taking blood thinners unless I have to because I've had microscopic bleeding for decades, had a number of tests, bit no cause has been found. My cat is not a year old yet and I can't avoid a few scratches, plus my husband had a stroke caused by atrial fibrillation after a heart attack (never diagnosed) and was given warfarin over the Christmas holiday after being moved to a minor surgical ward where he wasn't checked. He died shortly after being given a second dose of warfarin. After the first his blood pressure dropped way down and his heart speeded up, symptoms of internal bleeding. He died after a second stroke within an hour of the second warfarin dose, but I've known people who take it for years with no problems apart from bleeding massively with the slightest injury.

Maybe my GP checked my records (she's fairly new to me) and decided that it was best not to give me a blood thinner until she knew if I needed one?

If I knew which consultant I am to see I could call his secretary, but I've not had a letter yet so would have no idea who to call. If I could I would pay to see a cardiologist, both to not have to wait and because private consultations tend to last longer. But for me I expect it is out of the question. Maybe I'd be able to afford a single one without going into debt but that would be all, so if it takes too long I could look into it. But I'd not be able to pay for any tests. The NHS is so overstretched now that it is collapsing.

[Pam296 in reply to MaggieMaybe]

Hi Maggie. I have to admit that I worry about taking a blood thinner as I am very clumsy! I also spend a lot of time with cats and as you say, you can't help getting the odd scratch. I can understand your GP having reservations after all you have been through.

I knew something was wrong as my blood pressure monitor kept showing an irregular heart rate. I ended up seeing a cardiologist privately, which was 200.00. Had I had to pay for the echocardiogram, that would have been 400.00 and the 7 day monitor would have been 500.00. As you say, the NHS is so overstretched. It took a 7 day monitor to prove I had Paroxysmal Atrial Fibrillation. I do hope you have some luck soon. Perhaps your GP could check out the waiting list for you?

[MaggieMaybe in reply to Pam296]

Hi Pam. I don't know if I've had this but not known there was anything wrong. I have an old blood pressure monitor but it only shows heart rate, not if it's irregular. I did have some odd readings at the gym 3 years ago when sometimes after finishing on a machine its heart rate went up to 200 but I put that down to a faulty monitor, those on exercise machines aren't accurate.

I've made enquiries about going private today, had one company contacting me to say they had a consultant who specialised and quoted 200 for an initial consult.

So far I only have an SVT diagnosis, it will take more tests to find the reason, if any. I put a couple of apps on my phone today, one gave four readings of arrhythmia and two normal ones, no tachy or brachy. The other is intended to say if it might be Afib by using calculations based on readings from a finger and it said I didn't have it, but I tested with the other app straight after and I had no arrhythmia then, it said. But these apps can be no more than a rough guide.

I have a GP appointment in just over 2 weeks so I could ask about waiting lists, but I think that I have a good idea because I was told another one to two months last time. I know it's a long time because my friend who died of heart failure waited at least 4 months for a 1st consultation, 2 more months for an echo, and passed away 5 days before an angiogram appointment which had been delayed by a month..

I don't know how much of a problem the bisoprolol is causing. I still get a rate over 100 sometimes when I get up, and still get arrhythmias. In fact I suspect that some may be caused by it. Once, years ago, I was given a beta blocker for anxiety and it made me feel permanently ill.

I seem to have odd reactions to a lot of medications. For example, I'm allergic to statins and every anti-cholesterol drug I took increased my cholesterol so I relied on diet and exercise.to bring it down. But my symptoms now makes exercise difficult and if I do more than walking the arrhythmia gets worse.

[Pam296 in reply to MaggieMaybe]

I feel so sorry for you as with your symptoms, you really do need some reassurance. Yes, the newer BP monitors tend to have an irregular heartbeat indicatorand there is now one with an afib indicator. Only an indicator but it helps to put together a picture. When I posted on here asking for advice, the overwhelming opinion was that I should see an electrophysiologist. They are the experts in this area. If you see a consultant privately, be careful of unexpected additional costs. For example, my cardiologist did an ECG at the initial consultation and the BMI hospital charged me £144.00 for use of their facilities! With your problems with medication, the sooner you get a confirmed diagnosis, the better. You can then consider your options. Please let me know how you get on.

[maria40]

I am so sorry you feel so isolated with this problem. I too have SVT (this was told me by my previous GP reading from consultant's letter). My new GP tells me that the letter also mentions AFIB which I did not know about for two years , until I changed GP. I'm currently taking bisoprolol 2.5mg daily + aspirin but no other blood thinner.

Could you request a consultation with an electrophysiologist? The one I saw put my mind at rest considerably, as I worried about the variations in my symptoms but now feel reassured although it's natural to feel alarmed at a big cluster of palpitations and the feeling of being about to black out, which I still have from time to time.

I wonder if Cat's Protection League could offer suggestions about your cat's care if you did have to go into hospital which I very much hope you won't have to.

[MaggieMaybe in reply to maria40]

Thanks fir the info and sharing Maria. I had an ECG at my GP surgery back in November, it was normal. In the New Year I was a lot worse, saw a different GP who ordered the 24 hour ECG. Got the results from yet another who gave me zero info apart from saying I had SVT and putting me on 2.5 mg bisoprolol a day. I think she was planning on giving me propanalol but I'd had very bad side-effects with that in the past. I went back to the GP who ordered the ECG, not even knowing if a consult had been arranged, and the bisoprolol was increased to 3.75 mg plus I was told a request to see a cardiologist had been made. On my last visit I asked if the latest ECG said what caused the SVT and apparently it said it might originate in the atrium. The bisoprolol was reduced back to 2.5 mg because of sides but I don't think she'd made notes of my weakness and dizziness before because she thought that was caused by the medication.

I think that because I am alone I get more alarmed about my symptoms and that may make them worse. Not knowing and not having any treatment that makes much difference isn't exactly fun.

I thought about an electro9physiologist but so far I don't know if it's only electrical or if there us a structural problem, so I think a cardiologist comes first.

It's strange, but I usually feel worst when I wake up and feel better during the day, often starting to have more problems again late in the evening.

I could arrange for Cats Protection to find a new permanent home for my cat but U don't want that. They aren't very big in my area. I belong to the Cinnamon Trust, a charity that provides homes for pets when their owners can't care for them and they arrange dog walking, but I don't know about cats. I could ask them to advertise for an emergency fostering volunteer in my area. My cat ensures that I keep on, I have to in order to care for her, but I worry what would happen if I did go into hospital. There have been a couple of times when I may have gone if I didn't have her, as my last two friends passed away in the first couple of months this year.

[John87 in reply to MaggieMaybe]

"It's strange, but I usually feel worst when I wake up and feel better during the day, often starting to have more problems again late in the evening."

That's exactly the same as me. In the morning I'd wake up sometimes with my BPM at 90/95. It hasn't been like that over the past couple of days though when I woke up it was only 68. After I have my main meal towards the back-end of the night 8pm. I seem to be more prone to ectopic beats.

I'm a 29-year-old male, that's suffered from ectopic beats since I was 18. But didn't pay much attention to them as I thought everyone got palpitations. It wasn't until I gout at the end of January everything started to go wrong. After the gout subsided, I was taking cough medication for a cold when I had a flutter sensation I went to open a window, when I had another one, I lay down on my bed and my heart started beating really fast, and really hard. This is the first time I'd ever experienced anything like this in my life and I thought I was gonna die. Although I had mild ectopic beats in the past they never caused my heart rate to start beating this fast and hard. I called 999 and they told me to go to A&E, I had two ECG's that showed no irregularity other than tachycardia but in sinus rhythm. I had a holter monitor for three-days but had no real attacks. The cardiologist who looked at the monitor saw ectopic beats but wasn't worried. I since had two attacks in March that caused me to call 999. The first time the paramedics said my ECG was fine and I' just suffering from aniexty and panic attacks. The second time I had two flutter sensations early in the morning that caused my heart rate to start beating really fast and really hard again. I went to A&E and my heart rate wouldn't come down from 120/130bpm. Once the Doctor checked my ECG he said although I was in tachycardia my heart was in sinus rhythm. My heart rate stayed at about 120/130bpm for an hour and a half. So I went home and went to bed. I'm going to see a Cardiologist next Wednesday and I can't wait.

I think I may be suffering from SVT. I usually get an ectopic beat followed by a racing heart rate. Sometimes these can be mild and other times they've made me call 999. The times I've called 999 I genuinely thought I was gonna die. One was recorded on my fitbit at 158bpm. The other times I think they were at over 180bpm.

[maria40]

I found the electrophysiologist very well informed about everything cardiological so think it would be well worth while for you to see one. It takes a while to get an appointment - what doesn't? - because there aren't too many EPs around. I was lucky, as I'm in West Sussex and there is one in Brighton.

I think your GP should know about the stress and worries you have because obviously , as I know from my own experience, they don't improve the condition. It might be worth finding out from Arrhythmia Alliance whether there is a support group in your area. If so, you might find people with similar experience who can help. At the very least it gives you the chance to have a good vent!