Please can someone tell me what I should be asking?

[BeccyD]

After a brief stint in hospital this week and no answers as yet, I thought I’d do a bit of research of my own. I have been part of healthunlocked before but not on this platform.

I am Hypothyroide 100g thyroxine a day, my T4/3 is mid range although my TSH of .003 ( which most doctors will have you believe I said overly medicated but I am symptom free so not changing unless I really have too) I suffer with frequent uti’s which I take permanent antibiotic for, an over active bladder (mirabegron) hypertension (8mg perindopril) and hrt.

Around 4 months back I started training to do a walking marathon as I was feeling fitter than I had done in years but noticed that I was starting to get ectopic beats, and was getting really breathless when walking, and it was beginning to happen whenever I wasn’t doing anything. I have had a few over the years but my go said they were nothing to worry about as they were very infrequent. But the weeks went on I was getting worse With runs of ectopic beats that were/are lasting 2 or 3 hours at a time, leaving me exhausted, and light headed with some chest and neck ache, and every now and then wake me at night.

As I had lost my father to a massive heart attack at 62, after a series of them starting when he was just 35, I made an appointment to see my gp. The go said she thought that I was probably ok, but given my family history she would refer me to the Rapid Chest pain clinic for a stress test.

2 weeks on the test showed that I potentially had angina, and they put me on beta blockers and aspirin an said they wanted to do an angiogram, just to dot the i’s and cross the t’s as it were.

2 weeks on and the angiogram showed I had clear arteries but during the text I had a massive run of ectopics and passed out so they had to stop. I wasn’t give any explanation as to why my heart went crazy other than being told it sometimes does that, and they think it’s probably just my blood pressure. Later that day they sent me home with a different blood pressure medication to take alongside the perindopril and told me not to take any more aspirin or beta blockers.

(The next day I suffered a massive Hematoma in my leg and groin, which is still coming out now over a week later).

Having been discharged less than a week by Tuesday this week I was having so many ectopic beats and pain in my chest and neck, I could barely stand without passing out and feeling violently sick so I called my surgery and was given an emergency appointment with the nurse practitioner, she ran an ecg, and told me that she wasn’t able to deal with me as I was outside her skill set and she was getting one of the doctors to see me. The doctor ran another ecg, and the called an ambulance telling them I had what she believed was unstable angina. The ambulance crew gave me aspirin and did yet another ecg, then put on the lights and sirens and rushed me to hospital. After hours of blood tests, more ecgs and lots more I was still feeling pretty rubbish, and had yet to see a cardiologist. Eventually the doctor that was looking after me appeared and said that the cardio unit was happy with my bloods, and that the angiogram I’d had the week before was clear, so it was probably prinzmetals angina at which point they gave me three small pills take ( I have no recollection of what they were) and sent my other half of to the pharmacy for a gtn spray and said I could go home. I didn’t even make it off the edge of the bed before my heart felt like it was about to stop and I started to be lightheaded all over again. At this point they decided perhaps I should stay, and that maybe getting a cardio consult was a good idea, and some time later someone appeared I tried my best to explain what had been happening and he said that he thought he should run some test, so after an arterial scan and a cat scan, they said they can’t see anything wrong with my heart and told me for the millionth time my angiogram was clear, that it was possibly a combination of a virus, and the new blood pressure meds having a bad reaction, to stop taking those and go back to the beta blockers 1.25.

I now have 3 appointments next week at the cardio unit for a 24 tape and an echo, but right now I’m still feeling dreadful and can’t do anything without the ectopic beats starting up and pain and breathlessness being an issue. I have cut out nearly everything stimulating and I’m trying to just do nothing, but I can’t keep doing nothing indefinitely.

Any ideas as to what questions I should be asking next week would be really helpful. Unfortunately when my father passed we never thought to question anything that happened as the trauma of it took over everything at the

[IanMK]

Hi Becky

Angina and thyroid issues are outside my personal experience and I am not qualified to give medical advice. However, it looks as though the echocardiogram and 24 hour tape are the appropriate thing to do. I would also expect a full range of blood tests and an ECG (electrocardiograph) or two. I’m sure you’ve already had your HR & BP taken countless times. A cardiac MRI may also be in the pipeline. What they will be trying to do is identify what is wrong and, from there, identify the root cause. I was initially told by my cardiologist that they may not be able to identify a root cause. There are many permutations and they cover a range of factors which include viral and genetic (amongst others). Questions often lead on from the previous answer.

In my case it was discovered that my heart was inefficient. The condition was described to me as ‘heart failure’ (clearly not as fatal as it sounds). This was later attributed to dilated cardiomyopathy which resulted in an Ejection Fraction (basically ‘efficiency ‘) of 25% - should be greater than 50%. The next stage of my investigation determined that my heart was malfunctioning due to rogue electrical disturbances in my heart. At this point my care was passed over to a specialist cardiologist - an electrophysiologist - who deals with the electrical side of the heart; the rate and rhythm specialist.

I hope this helps.

[Bulver]

Hi Beccy, so sorry to hear of your experiences, they are obviously very concerning for you. I concur with Ian’s comments, I had similar, but not as severe, problems for many years, which doctors put down to an arthritic condition affecting my breast bone. In 2014, I had more attacks and decided I must get them checked. Ended up in A&E being told that I had an electro-cardiac condition called Brugada Syndrome’, a genetic condition. Resulted in me having an ICD (Implantable cardioverter defibrillator) fitted in my chest for protection, at the instigation of an Electrophysiologist. Don’t suggest this is what your condition is, as the heart is such a complex machine, but there are specialists out there who can help.

I wish you well, and hope that you can find the probable causes of your attacks.