Adrenal insufficiency & cardiac issues update

[Bluey-1]

Busy times here. Last week met with the endo nurse to discuss slow steroid tapering and left with hydrocortisone injections, leaflets in case of an emergency. Very supportive.

GP bumped me up the NHS cardiology list. Saw a consultant following a private echocardiogram/ heart monitor. She went through the options.

1. Continue with meds, said to increase Bisoprolol

2. Pacemaker - would still need meds

3. Ablation

18 month wait for procedures and I’ll be well over 70 by then. That seemed to be an issue but this wasn’t fully spelled out. I have felt so fatigued and breathless on little exertion I’m desperate to have something done.

Saw private consultant yesterday. Went through my results. Heart slightly enlarged. Have atrial flutter and atrial fibrillation. Heart rate as low as 40 at times. One episode where the HR pause was 3 seconds or longer. 24 episodes of supraventricular tachycardia (over 12 days).

He suggested changing meds. Left with a prescription for Sotalol. I never felt Bisoprolol was working well. Took two doses so far and am in sinus rhythm today - can’t be working that quickly, probably a fluke. I’ve been in Afib and feeling dreadful most of this week. He was going to write to my GP to request a change from Edoxaban to Amioderone.

A few other health issues - TIA linked to Afib Aug 23 but no follow up. Classed as adrenally insufficient as on long term steroids. High BNP scores linked to Afib.

He talked through potential procedures - pacemaker or an ablation. The pacemaker could be fitted sooner, the ablation a month wait. Bless him, as I’m a self funded patient he made it clear that a % of ablations may need to be repeated and he was concerned for me in the event this may be the case. These procedures are an eye wateringly cost for self funders as he acknowledged but I do feel pretty desperate. He said to think about it and look at the BHF website for more info. I’ll get into that after the weekend. I’m seeing him again in a week.

I know only I can make the decision and there are pros/cons/risks with anything. It’s difficult. I recognise too how we are all different individually but has anyone been in a similar position regarding these procedures? Pacemaker or risk an ablation? I know PMRpro, you had a recent ablation. Have I read that you also have a pacemaker? I am a complicated bunny with all the other stuff that’s gone on. Very supportive doctor though. On hearing the overview of my health issues over the last 2 years or so he acknowledged I’d had a really rough time.

[piglette]

My next door neighbour has had a pacemaker for at least ten years, if not longer. He rows on the Thames, goes to the pub …..

[Bluey-1 in reply to piglette]

Oh my god, I would love some of that action. Well, at least a couple of miles decent walk.

[piglette in reply to Bluey-1]

The pub is pretty good too!!

[Bluey-1 in reply to piglette]

Absolutely, getting about, that’s what I want!

[PMRpro Ambassador]

I have had a/fib for about 20 years - it started about the same time as the PMR and is almost certainly due to it. It wasn't diagnosed until about 12 years ago and was managed well with medication for over 10 years until I had the bivalent Covid jab and it woke up! From November to April I was in a/f for about 12 hours a day and then I saw the electrophysiologist (the cardiologist who does ablations) who put me on the list for an ablation (at 71 so I was 71+ by the time it was done in January). If you are normally fit and active being over 70 isn't a problem. In the meantime he changed the medication from propafenone to flecainide and the a/f was managed as well as it had been originally. I was also on bispoprolol but it never did a lot!

I had the pacemaker because I was having bradycardic episodes, 7 second pauses. I had collapsed and hit my head, was agitated in the ED and they gave me i.v. diazepam which always triggers a/f for me! However, it meant they saw the pauses and I got an emergency pacemaker 3 or 4 days later. The collapse coincided with a TGA, a transient global amnesia, and I had had 2 previously. The cardiologist is confident the TGAs were due to the a/f and reckoned they would stop with the pacemaker - I haven't had another so maybe he was right!!

If I were you I'd request being put on the list for both procedures and say you would come at short notice if there was a cancellation - means you have to go if they offer though! And try various medications. It can be managed well on the right stuff but they have to find what it is. Emphasise to all medics how limiting it is. No glossing over it. I had to wait from April to December here in Italy - and then my date was shifted because it was the one day that our doctors went on strike!! You don't get off meds straight away after an ablation either but I do feel a lot better! I wish I had bothered the local hospital more with the a/f. I felt absolutely rotten and I live alone. I should have called the ambo a few times, it might have shifted me up the list!!

[Bluey-1 in reply to PMRpro]

Thank you so much for this. I wish I’d made a fuss earlier. It is extremely limiting. Did your pacemaker not stop the AF?

[PMRpro Ambassador in reply to Bluey-1]

The pacemaker doesn't stop a/fib - it allows them to medicate more to keep the arrythmia less without your heart rate slowing too much if you already have bradycardia episodes. 40 is fine occasionally but if it gets much lower then you have these longer pauses and you can have fainting spells which can be dangerous - when driving or on stairs for example.

If you have other arrythmias they sometimes use a type of pacemaker that will shock your heart back to a good rhythm but not usually for a/fib. they reserve that for hospital use if an episode goes on too long. But a/fib is regarded as not particularly dangerous - only if the heart rate gets too high for too long and that usually means days or very high, above 130 for extended periods for example. It may be uncomfortable and you may feel rubbish but it won't kill you. Lots of people have permanent a/fib and don't even know. If you don't complain about it, the doctors think you are like that. And that is why the waits can be longish in the UK.

I didn't know I had the pacemaker once the scar was healed - it is pretty uncomfortable for the first week or two though. I never feel the pacemaker if it does kick in. I can't even find it if I feel for it under the skin - there is a small scar but it isn't actually over where it is! They even have to look hard at my annual check! The a/fib was well medicated and at that time ablation wasn't very successful so it was reserved for cases where medication wasn't working. Now it is far more successful with new techniques so it is used a lot more but needs operating time in the catheter lab where they do all the other stuff for heart attacks and clots - and while they are life-threatening, a/fib is not so tends to be bumped down the list. Bradycardia that gets very slow can be life-threatening - so less likely to be bumped and then they can medicate better and deal with the a/fib too. They are horses for courses - if you have severe bradycardias then you may need a pacemaker, an ablation deals with one problem of arrythmia, a pacemaker another, Only the e-physiologist will be able to explain the difference to you.

That nurse needed a clip round the ear as my mother would have said!!!!

[Bluey-1 in reply to PMRpro]

That detailed summary is so helpful to my understanding of the situation PMRpro. I’ll be making notes based on this to take to the next appointment. I definitely want something done as I don’t want it to get worse. I’m assuming as it comes and goes I have paroxysmal Afib, although the longest I was in Afib during the HR trace was 2 days 21 hours. I feel dreadful during these periods. I’ve had the 4th dose of Soltalol so far and have been in sinus mode since taking it. Agree Bisoprolol did little. Still have bouts of breathlessness on exertion - walking up and down steps at the station. We’re visiting our son and family this weekend and it’s a mission planning around my health issues to do anything. Thank you so much.

[papadapadoo in reply to PMRpro]

This account is so useful for me--thanks, PMRPro!

[Bluey-1 in reply to PMRpro]

The choices I’ve been asked to consider are a pacemaker or ablation. Reading through your response you mentioned the pacemaker initially then the ablation later. I’m unsure which to go for re the success rate. Does it feel ok having the pacemaker. I don’t know anyone who has one.

I’m desperate now and really wish, as you say, I’d made more fuss. I’ve not been properly followed up since the stroke which is annoying. You really have to advocate for yourself and that is exhausting. Thanks so much for your detailed response.

[Bluey-1 in reply to PMRpro]

Interesting you mentioned calling the ambo. A friend had a TIA and her husband called the ambo. She’s had all sorts of follow up. When I had the TIA we rushed to the hospital as it was quicker. By then I’d sort of recovered and said to the nurse confidently - I think I’ve had a stroke. ‘We’ll be the judge of that’ was her reply! You really do have to make a fuss! Should have learnt by 69 but having been fit, well and independent it goes against the grain. Certainly doesn’t pay off to put up with the fatigue which I put down to adrenals for ages. It was the increasing breathlessness and my Apple Watch which raised big alarm bells.

[GrandmaPirate]

I got because of Atrial fibrillation a cryo-ablation already 8 years ago and am fine since then. Right after the ablation I had to take sotalol for a few weeks until the scar of the ablation would be totally healed. I suffer from PMR (well controlled with 1mg pred/day) since more than 4 years. I am wearing a good tracker since my ablation and proudly show print outs of my HR to my cardiologist, who performer the ablation and sees me once/year for control. I am walking the dog, cycling, doing 50 minutes of pilates each day and grateful for the ablation.

[Karendeena]

I had an ablation in March this year. I am quietly confident it has been successful as I have had no AF episodes that I know of. It's better not waiting for the next one to strike and my confidence has increased, so much so I am going abroad for the first time since diagnosis in 2020.

Yes, there are some serious risks with ablation but these are rare. I was very scared but pleased I had it done. The recovery was a bit bumpy in the first few weeks but I was walking out the second day of the procedure. The indigestion was the worst and and the sleepless nights.

I would have done anything to get rid of that awful feeling when in AF (I had AF and Flutter and both were ablated at the same time). My EP told me the success rate for first time ablation was 80 to 85% if done when still paroxysmal and flutter has higher success rates as it's easier to treat.