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.

 

[s'nic]

BP low again, but pulse not quite as low as it was, and blood oxygen slightly higher on this low dose beta blocker. However heart rhythms are really not good making me feel 'bleh'.

I'm annoyed with my useless surgery - I had a telephone appointment arranged sometime between 8am and 1pm Tuesday, and was sent a text confirming that.
Today I got a text reminder saying my phone appointment is between 8am and 5 pm Tuesday.
I feel that 5 hours is too wide an appointment window anyhow, but switching it to a 9 hour window without consultation is totally unacceptable

 

[gail2]

to you

 

[s'nic]

As mentioned in another thread I graphed my resting heart rate and noticed that it's been steadily dropping since january this year. The end of january is when I got my 3 diagnosis, totally changed my diet and experienced faster weight loss.
It seems a faster/more severe weight loss/calorie restriction can cause bradycardia, low BP and palpitations (most noticeable in eating disorders).
One US government publication said that losing more than 10% body weight over 6 months may increase the possibility of health risks. I'm guessing that because I started from poor health it has impacted my BP, heart rate and heart rhythm

I had my phone appointment with the doc - he agrees the weight loss (while good) has had these effects. Neither of us think it sensible to increase my meds so he is going to refer me right back to cardiology with detail on my situation.

On current meds morning bp picked up irregular heartbeat in multiple readings on 6/9 days (not having eaten), but for evening bp this was 2/9 days and only 1 irregular heartbeat detected on each day - big difference!
So change of plans - I'll try stabilise my weight and spread my food throughout the day, and hope for some improvement.

I'm really not having fun here 🙄

 

[Eddy Edson]

As mentioned in another thread I graphed my resting heart rate and noticed that it's been steadily dropping since january this year. The end of january is when I got my 3 diagnosis, totally changed my diet and experienced faster weight loss.
It seems a faster/more severe weight loss/calorie restriction can cause bradycardia, low BP and palpitations (most noticeable in eating disorders).
One US government publication said that losing more than 10% body weight over 6 months may increase the possibility of health risks. I'm guessing that because I started from poor health it has impacted my BP, heart rate and heart rhythm

I had my phone appointment with the doc - he agrees the weight loss (while good) has had these effects. Neither of us think it sensible to increase my meds so he is going to refer me right back to cardiology with detail on my situation.

On current meds morning bp picked up irregular heartbeat in multiple readings on 6/9 days (not having eaten), but for evening bp this was 2/9 days and only 1 irregular heartbeat detected on each day - big difference!
So change of plans - I'll try stabilise my weight and spread my food throughout the day, and hope for some improvement.

I'm really not having fun here 🙄

Really hope you get good insights & and a good plan from your cardio! Do you have a good kidney specialist?

From the clueless outsider gallery, it seems to me like the cardiorenal stuff really is the priority. Your HbA1c is just fine and is the focal fatty liver by itself actually a big issue?

Anyway, all the best & hope you get things sorted!

 

[everydayupsanddowns]

I'm really not having fun here 🙄

Sorry to hear about you having to juggle all these competing and conflicting requirements s’nic.

Hope that your cardiologist is able to put a plan together, and that the spread-out meals help to stabilise things a little in the meantime.

 

[s'nic]

Really hope you get good insights & and a good plan from your cardio! Do you have a good kidney specialist?

From the clueless outsider gallery, it seems to me like the cardiorenal stuff really is the priority. Your HbA1c is just fine and is the focal fatty liver by itself actually a big issue?

Anyway, all the best & hope you get things sorted!

I'm only stage 3a ckd (tho I almost hit stage 3b in sept last year). As I'm 3a I have no kidney specialist, and to be totally honest I have received zero guidance on ckd. Luckily I'm pretty good at my own research.

I agree, cardiorenal is key as I only need to keep tabs on carbs / sugars to keep the prediabetes at bay.

The focal fatty liver was causing me significant regular pains, which subsided to a mix of some pain and a weird pressurised feeling as if I had an alien in my liver (it's like in the sigorney weaver films where someone clutches their stomach just before the alien emerges 😱).
The liver seems to have calmed more recently, so hopefully it's improved to some extent. But I need to assume the lump of fat is still there and factor in liver and cholesterol healthy eating.

My watch tracks blood oxygen, which I consider useful as a 'trend' rather then an accurate measurement.
This new lower dose beta blocker is resulting in less oxygen dips, and so far I've had no dizziness, so it's now just a case of regular snacks/small meals (I don't eat a lot), hope my pulse speeds up, and wait til cardiology contact me.