A Lot Has Been Going On Since I Last Posted

[Channeal]

I think it is about 10 months since I last posted here - and a lot has been happening!

My previous posts were all connected with my quest to discover why I always feel so tired and unwell and especially why I wake up after just a few hours sleep feeling really unwell.

Last November, I bought a Wellue O2 Ring to monitor my heart rate and overnight oxygen levels and discovered that I had a pretty low heart rate (all the time) and that my overnight oxygen levels have periods of going really low too. I ended up being referred to a cardiologist for my low heart rate and a sleep clinic for my overnight problems. As there was going to be a wait of several months for both, in the meantime I hired the test equipment from Hope2Sleep which found I had mild sleep apnoea but also confirmed that my oxygen levels go low. They recommended that I still wait for the NHS sleep clinic appointment, but that I should also have my pulmonary function and CO2 levels should be checked.

Just like buses - where two usually come along together after a long wait - both of my NHS appointments happened together towards the end of May (actually not as long a wait as I was expecting).

The sleep clinic accepted the Hope2Sleep study and gave me a cpap machine. Unfortunately, there has been a problem ever since with them ordering a suitable mask for me and so I am still waiting to get going with the machine. Also, I have not been able to get the recommendation about having my lung function and CO2 levels check actioned: the current situation is that the sleep clinic told me I had to go to my own doctor in order to be referred for these tests, but when I eventually got to see a doctor at my GP practice, he said that the sleep clinic have got to do it! Meanwhile, I still wake up feeling terrible after just a few hours sleep!

With regard to my low heart rate..... my cardiology appointment brought with it a huge surprise as it seems that I was suffering from heart block (the problem had apparently worsened considerably while I was waiting for the appointment, although I had no idea anything had changed!). Two weeks later I had a pacemaker fitted! I guess it was a surprise, but tbh I was just happy to at last be able to do something that might possibly improve my health (although it actually did not really seem to make me feel any better).

However..... exactly two weeks after the procedure I ended up going to A&E for an unrelated stomach problem and the blood test they did threw up the fact that my potassium levels were low. They were apparently lower than normal the day of my pacemaker op, but at A&E they had gone down even more (possibly because I had just had bad diarrhoea). I was also told that the levels had been on the lower side of normal for at least two years.

Two lots of potassium supplements failed to help much, so a GP told me to stop taking indapamide as it can apparently cause low potassium. That was almost a month ago and my next talk with the GP is this coming Tuesday, but I have discovered that my potassium levels have actually gone shooting up to 4.5 which is well within normal and a really big jump.

Now here occurs a strange thing! For several years now, I have been feeling so very tired and lethargic. Not only that, but over the last few years my mobility has gone right down to the point that around Christmas I purchased a cheap wheelchair, so have to rely on being pushed to go out anywhere at all. I have just had my 73rd birthday, but apart from age there is no other obvious reason for my lack of mobility. Doctors have been no help with this; the last one I spoke to seized on the idea that my (mild) sleep apnoea is the cause of everything!

Since my potassium problems started, I have tried to increase my potassium intake (lots of bananas and coconut water etc.!) I stopped the indapamide when told to, but nothing else has changed. Yet, even before I stopped the indapamide, I had an inking that things were improving. First, it was my stomach problems (recurrent diarrhoea since before 2019, a colonoscopy in 2019 found no reason for it) which started to improve a little. There has also been a slight but definite improvement in my mobility. The other day, I got a few items of clothing out of the washing machine, carried them in a laundry basket to the clothes horse and then stood and hung them up, all without sitting down once. That might not sound very much, but it seemed like an utter miracle to me as before the potassium issue reared its head I could barely go from one room to the next without sitting down.

The question I want to ask you guys here is about indapamide. I am not sure how long I have been taking it, but it must be a good few years now. Could it have been lowering my potassium levels very gradually all this time? Also, could it have been causing me mobility problems etc. even before it went below what is considered by the NHS to be the lower limit for 'normal'? I did mention to the GP I spoke to before that they had been hovering only just above this lower limit for at least the last two years, but she was quick to dismiss that, saying the levels were previously within normal. I just need to know what has been causing my mobility problems etc, whether it could have been down to the indapamide all along and whether these problems have a good chance of improving further. (I am going to ask the GP on Tuesday how long I have been on indapamide as I want to know whether there could be any kind of link to when the mobility problems first started, they have been developing very gradually over several years.)

As an aside, a couple of people on here said that I was previously on too many drugs. The cardio doctors stopped the bisoprolol and if the indapamide is not replaced with another drug (I have been told to keep a check on my bp) then that is a reduction of two from the cocktail of drugs I was previously taking!

Does anyone here know anything about indapamide and low potassium levels?)

[Happyrosie]

I don’t, but your pharmacist might. Either the one employed by your doctor’s group o f surgeries, or maybe your dispensing pharmacist

[fishonabike]

sorry, I don't know about potassium levels but do know what it feels like to get my life back after years of reduced mobility and activity (in my case due to ME/CFS) - so I am cheering for you and suggest to take it very gentlyI hope you get answers soon and can build on your current improvement

[Janjay61]

Hi Channeal

I had issues with 2 medications given to me for BP one was losartan and the other indapamide- I was already taking felodipine- July 2023 I had bouts of palpitations lasting several hours non of which were captured on monitors- I felt so unwell like the worst hangover ever! Presenting myself at A&E several times- until one doctor asked if I minded having my bloods retested- I had a potassium level of 3.0 and was told if it had been 2.8 they would have me in hospital- told to stop taking losartan- increased my intake of potassium rich foods- was away in Liverpool for a short break and had to go to A&E- I was put on a potassium infusion 8 hours- had a GP appointment and was asked” who put you on indapamide?” That was removed apparently both medications deplete potassium intake - I have now been diagnosed with AF and other bits going on but have a low heart rate which no professional seems concerned about- I am! especially when my BP is on the low side!! Hope you get some answers soon .

[Channeal in reply to Janjay61]

Thank you, I found your reply extremely interesting. My potassium levels were as follows:

3.6 in 2022

3.5 in 2023

3.2 on June 10th (pacemaker insertion)

2.8 on June 24th (at A&E)

3.2 on 10th July (after potassium tablets)

4.5 on 23rd Aug (1 month after indapamide stopped)

I note that you also mentioned losartan. My doctor has cut my losartan dose because I mentioned that I had read that it can cause sleep problems. On reflection though, my sleep problems actually started at least 12 years ago (though they have become a lot worse now). I am not sure how long I have been on my other drugs for, but think the losartan might have been one of the later ones.

As well as a reduced dose of losartan, I am also on amlodipine, atorvastatin, daily aspirin, levothyroxine and omeprazole.

I know for certain that the last three were definitely started after the beginning of my sleep problems, the losartan probably was too.

[Janjay61 in reply to Channeal]

Hi Channeal- I’m also on atorvastatin and felodipine- I stopped taking omeprazole- didn’t need it but that is supposed to reduce magnesium levels- I mentioned it to my GP and she said it does! My sleep is a bit hit and miss from not sleeping at all every other night to getting 5-6 hours of broken sleep!

[cappachina]

Hi Channeal. I haven't had these problems but a friend of mine was really ill years ago sounding just like you Eventually they discovered her potassium levels were very low and once they were back to normal she was so much better and back to her normal self Now like you she ensures she has enough in her diet so. maybe that alone is helping you