Heart fluttering with fatigue

[Temoral]

Hi Everyone. Is it common that tapering...currently trying to get below 5 before Rheumy appt...to have heart/chest fluttery sensations? Not a racing heartbeat, just strange sensations with extreme fatigue....any advice or explanations welcome....thank you. Feeling a bit tearful with the journey at the moment.....

[DorsetLady PMRGCAuk volunteer]

Ho

This is a fairly recent post on similar subject -

healthunlocked.com/pmrgcauk...

Seems to be quite common with adrenal insufficiency -as is the fatigue and feeling tearful -They sure have a lot to answer for when they aren’t up to scratch -

healthunlocked.com/pmrgcauk...

[Temoral in reply to DorsetLady]

Thank you....those symptoms described in the posts sound very familiar, in that the feelings are difficult to describe...especially to a GP...and more especially to a rheumy.

[PMRpro Ambassador]

If you develop an arrythmia of any sort, which is not unusual with adrenal insufficiency, then you can have that sort of effect. When my atrial fibrillation is playing up, I am permanently exhausted.

Do you have a pulse oximeter? That's the cheap way of assessing what your heart may be doing!

[Temoral in reply to PMRpro]

I don't have one, but I think it could be a good idea, if only to provide peace of mind. If rheumy wasn't expecting me to have reduced from 5 to 4 in just 4 weeks, I would just stay on 5, but it has to be tackled someday I suppose.

[PMRpro Ambassador in reply to Temoral]

At this stage 1/2mg is plenty at a time, and even over 2 months. There's no hurry and it all takes time - plus, it isn't slow if it works!

[Temoral in reply to PMRpro]

I so agree....much rather take longer and feel better. The one size fits all approach causes stress in itself. Just looked at oximeters and they are in stock at my local Boots...easy. thanks.

[SnazzyD in reply to Temoral]

I had to stand my ground and reduce more slowly than was demanded on the grounds that I had to manage to get through my life as well. I said I wasn’t going backwards so that was a good thing. I did 0.5mg over anything from 6-14 weeks, the lower the slower.

[Temoral in reply to SnazzyD]

Thanks SnazzyD....I will stand my ground too....3rd July appt. 😉

[Hulotsholiday in reply to PMRpro]

Do you know if oxygen level affects AF or beat irregularity? I noticed oxygen levels run between 84% and 97%. Fluctuating throughout day. The other day a low reading coincided with wildly different beat to beat…45, 42,27,86,103, 79, 55,…

[PMRpro Ambassador in reply to Hulotsholiday]

It's the AF that affects the O2 levels - the heart isn't pumping blood around the body effectively and so the peripheral circulation can get to quite low oxygen saturations as a result. A heart rate of under 60 is associated with low oxygen levels which can get to the state of organs being starved of oxygen.

[Hulotsholiday in reply to PMRpro]

Thank you. I’m bradycardic, so my usual heart rate is between 50 to 60 when active. 40 or lower resting. It’s difficult trying to understand how all these things are interacting. I’m getting tachycardic spikes (suddenly rate leaps to 130 or 160) which are unpleasant but im controlling with ice cold water on head, neck and wrists. Roll on cardiologist referral made last November. Thanks again.

[PMRpro Ambassador in reply to Hulotsholiday]

Are you on anticoagulant medication? You should be. If you get tachy spikes above 140 - 999. Cold water is NOT enough ...

[Hulotsholiday in reply to PMRpro]

Thank you; no I’m not on any medication. I haven’t had a diagnosis yet but I know something isn’t right. I think I’ll have to see if there’s a decent cardiologist for a private consultation ( and see what it will cost) because the wait for referral is over 12 months. I’m getting out of breathe easily and ankles are swelling so I guess ticker is struggling a bit. Thanks.

[PMRpro Ambassador in reply to Hulotsholiday]

For routine maybe - not for emergency ...

[Hulotsholiday in reply to PMRpro]

Thank you for your comments. I spoke to GP today who was horrified that October 22 referall is still outstanding. She’s emailing cardiology today and says I need an implantable monitor to record cardiac function for a month or so before any treatment is decided. She thinks I need a pacemaker but said it’s not her call. Your views prompted me to push for action, so again, thank you.

[PMRpro Ambassador in reply to Hulotsholiday]

Good. It depends on what the arrythmia turns out to be and how they treat it, The form I have included bradycardic episodes which caused pauses in my heart beats of up to 7 seconds (that would be a pulse of under 10 if it lasted) so I was given a pacemaker but if you aren't bradycardic, it may be unnecessary,

[Hulotsholiday in reply to PMRpro]

My bradycardia is consistent; it’s just slow at 40/42 resting, 55 if active and maybe 75/80 if I exercise. One night last week it dropped to 36 whilst sleeping 22 times for 10 minutes or more, which is unusual. Another night I was quietly reading, felt unpleasant and when I checked, it was at 82 and rising for no reason. I think I’m naturally bradycardic as it’s been like that for at least 50 years. Used to be fit, but less so now. It’s the spikes I find more troubling as they’re becoming more frequent. Still, hopefully it’ll be resolved soon and again, thanks for your insights which I’ve found invaluable.

[PMRpro Ambassador in reply to Hulotsholiday]

Yes, I imagine it will be a pacemaker so they can medicate to control the spikes, which is basically what happened to me. The medication was fine until last November when it wasn't spikes but 12 hour long periods of arrythmia but rarely above 130. Never bad enough to bother the ED but I felt rubbish when doing anything except sit at the computer! Even cooking a meal had its moments. Eventually I saw a cardiologist who referred me immediately for assessment for ablation but now I'm waiting for that - but they changed the medication which has helped by almost stopping the A/F but the last few days it has been there,

[Windy183]

I sympathise. I mentioned it in this group a while back, weird butterfly type sensations. Very discomforting but not painful. They seem to come and go but I’ve worked out it might be a sign I’ve overdone it. Then again maybe not 🤷🏼‍♀️

[Temoral in reply to Windy183]

Thanks Windy183...exactly how it feels...and we can choose a cause from a number of things...but adrenals are always there in the background...fluttering.😉

[Animalover65]

Hi, I am on 2mg and feeling a bit anxious from time to time. I also have noticed if I don't eat at regular intervals and if I don't include protein in a meal - especially if I eat a piece of cake on its own I can experience something like the symptoms you describe. Does diet play a part in how you feel?

[Temoral in reply to Animalover65]

Hi Animalover65...I hadn't noticed a diet link but will try to track it . It's so random...today was able to go to an hour of table tennis with no symptoms of any kind. Then acupuncture, where he said that pulses were very 'active'......so who knows what tricks the adrenals can play ...

[Karenjaninaz]

I have this occasionally with tapering: checked out by cardiologist. It means I'm doing too much or overtired.

age 81