Hopefully progress

[s'nic]

I don't know whether to be hopeful or not.

I had a 48 hr heart monitor back in May and had been waiting for the results (my GP wanted a cardiologist to be the one to decide on a medication change).
It would appear the NHS is paying a private consultant to do some work for the nhs - my case was handed to him. Recently without seeing or speaking to me he sent a letter to my GP saying as the ectopic burden (on beta blocker meds) atm is 6% there is "no mandate to treat this" and my meds can be doubled if my symptoms are bothering me. Then just passed my back to the surgery.

I was not amused!
I then had a telephone appointment with the GP's pharmacist. I explained to the pharmacist that my BP was low, my pulse was slow, and I was getting dizzy spells. I also explained my concern that my kidneys could already be impacted by a reduced blood supply and increasing my meds would make things worse.
The pharmacist agreed with me adding that it would impact all organs not just kidneys. He arranged an appointment with a GP the following monday.

The GP also agreed with me, and agreed that the beta blockers were causing low BP and Bradycardia, however ALL meds to treat ectopics will lower both my BP and heart rate.
He suggested I try a week without meds which I was wary of. My last cardiologist told my that with an ectopic burden of 7% i was at risk of a heart attack without meds. The doc prescribed my a different beta blocker, and suggested I try a week without them.

I checked the half life of my current beta blocker (10-30 hrs depending on individual factors). I figured with ckd I could count on it being 20-30 hrs.
From 29th sept there should have been negligible amounts of meds in my system, so at present I am med free.
I'm still getting ectopic heartbeats, and my chest feels kinda heavy and a bit airless. But it seems I am either getting less ectopics, or I am getting less severe ectopics (less impactful).
This would all fit in with the likelihood that bradycardia was contributing to my heart disturbances and dizzy spells
In august my avg morning bp was 92/65, with 105/70 in the evening, and a pulse generally around 48 (but reported as low as 38 when resting).
Without meds it seems my avg morning bp is 103/73, with 111/77 in the evening, and a pulse generally around 57.

I'll need to take the new beta blocker to find it's affect on me, but I really don't want to go back to low bp plus low pulse.
I have telephone appointment with the GP on 22 oct so am collecting observations and noting things I want to talk to him about.
Ok, that was long ... but there was more ...

 

[s'nic]

When I saw my GP I asked him about my liver results - the surgery has simply sent a letter saying I had fat infiltration and advising to lose weight (my bmi is down to 22.9 now).

It was initially diagnosed as a hepatic heamangeoma, which is a non-cancerous growth in a specific area. So I suspected that rather than the standard fat throughout the liver, I had the less common fat only in one specific place (trust me to be different).
I queried this with the doctor and yup - I have focal fatty liver (rather than diffuse).

I also got the printout of the hospitals liver result and was shocked to see the line "This lesion can also be seen on previous CT scan from March 2021".

Wow ... I've been asking various doctors about the pain under my right rib since 2021. My response was always a kindof shrug and move on to a different topic.
I ended up putting it to the doctor that I had something wrong with my liver this year, and had an ultrasound and a mri.
It's just so crazy that something was spotted on a CT scan in 2021 ... did they know what it was then? If not then I'm doubly shocked that it would be totally ignored 😡

 

[everydayupsanddowns]

Goodness @s'nic

What a runaround you’ve had! Glad some progress is being made.

 

[s'nic]

Well, not progress yet, but the possibility may exist

I'm still not taking meds atm, and I wiped myself out yesterday making a small batch of muffins and cooking 1 meal (my garmin watch registered my body battery as 5 / 100 by bedtime and only recharged to 53 after a good nights sleep).

I've been resting all day today, but it's clear I can't continue not taking meds.
My concern is how much will the new beta blocker lower my bp & pulse when i do try taking it.
I've read that in some cases ablation can sort out ectopic heartbeats. It seems it's normally reserved for a higher amount of ectopics than I get, but can be performed on people who cannot tolerate the available medication.

I plan on raising the topic with my GP on 22nd (whether possible and whether it's a valid option).
At this point I'm feeling that meds are unlikely to be a solution that works for me.
So yes .. now that the issue has been positively acknowledged, I'm hopeful progress can move in the right direction.

 

[Eddy Edson]

I was given metoprolol to slow my heart rate down for a CCTA scan. It was brutal! Heart rate stuck in the low 40's and BP around 90/55. I would hate to do that every day, so big synpathies & hope you get something better sorted out soon.

 

[s'nic]

I stopped the no medication trial ... I had wanted to get a new baseline BP and pulse measurement, but my BP was all over the place, and ectopics were increasing.
I took my first Bisoprolol on Monday night, my BP has already taken a dive, and I seem to be having heart disturbances (so pretty normal lol).
My pulse seems to be reducing, and pretty much doing anything makes me feel a bit odd. I'll just monitor things until my scheduled appointment.