My dad (now 86) had a TAVI operation 3 years ago for Aortic Stenosis. He wasn't in heart failure before the operation, but was diagnosed with heart failure after the op.
Each medical professional that has listened to his heart has been surprised at how good his heart is for somebody that's in heart failure. He's also had an ECG which was fine. He's never had a follow up appointment with the TAVI team at the hospital who carried out his op - apparently this is par for the course.....
My dad has been on diuretics since being diagnosed with heart failure - he's on 25gm of frusemide every other day, and a bladder relaxant every day.
He goes to the toilet several times during the day, and gets up at least 4 times in the night for a pee, AND he also wears a pad at night as his mobility is not great, so it's a struggle to get to the toilet. The pad is often wet in the morning even though he's gone to the toilet 4 times.
He drinks fluids during the day (water, juice etc), but does not drink anywhere near as much as he pees! He also sweats heavily some nights, even when during the winter, and wakes up with a soaking wet bed from sweat.
He's becoming more and more confused, but dementia/alzheimer has been rule out.
Could this confusion be due to extreme dehydration due to the diuretics working too well.
It makes no sense that he seems to be peeing more than he is drinking, and if this is the case, the long term effects are not going to be great.
Anyone had any similar experiences? Thanks.
Written by
SBam47
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Yes , diuretics can cause confusion and delirium, especially if the person also sweats a lot of the dose is a little high.It's not necessarily the possibility of dehydration alone but the fact that you can leach out electrolytes and this can cause a salt imbalance. The same salts are important in the working of the brain which is why it can also cause other things like brain fog and poor coordination and trigger little episodes of arrhythmia.
It's not just diuretics of course. Salt imbalance symptoms can occur in anyone whom is suffering with an illness that affects their water intake or reduces salt levels like sweating in hot weather or during exercise.
The symptoms can be worse if the person is older or is also mildly anaemic or has other vitamin insufficiency which is why it's really important to have regular blood tests if you are on diuretics.
When did you father last receive a kidney function blood test specifically checking electrolytes?
If it has not been in the last three months , or since a more severe episode of confusion has occurred you need to go in and firmly request one.
Although it's done less often if he has not been checked in the last year he should also receive a Magnesium and Calcium blood check.
It would also be wise for them to do a urinalysis to check for low lying infection etc. and send your father father for a kidney ultrasound, not because there is definitely a problem but just to exclude it as a potential cause of the symptoms.
If he hasn't had the following tests done in the last six months , or since the current symptoms occurred you also need to request the following, mentioning that these tests are recommended within NICE guidelines for general monitoring for patients in your father's age range on medications.
The blood tests request should include , full blood count, ferritin, Vitamin B 12 , Folate , liver function test , Vitamin D and a Diabetes HbA1c.
When the results are in , even if the GP states things are normal. make sure you request a copy and check the result against the normal range indicator shown next to your father's figure. Often GPs say things are normal but the results may be very low or very high within the normal range and this can also cause Insufficiency and symptoms in patients , especially older ones which are better rectified to prevent problems sooner rather than later with changes in hydration , supplements and diet changes.
The positive thing is if it turns out to be a salt deficiency or nutrient insufficiency it's easy to treat and the symptoms respond pretty quickly.
With a salt imbalance Electrolyte sachets like Dioralyte are prescribed or tablets for specific salts, or your father may be recommended to reduce fluid intake in more severe circumstances.
He may then require a smaller dose of diuretics, especially if he has lost weight since they were first prescribed. He may require a daily salt tablet to replenish his electrolytes each day to prevent it happening again or make diet changes to include more of the salt type he may be losing (that's why it's better to have the test so that a patient doesn't increase the wrong salt and potentially make the imbalance worse).
I have to drink a lot of water as part of my cardiac self care, which means I also need more salt each day because obviously I go to the loo more I also lose the salts.
Depending on your cardiac conditions or medication you will usually be requested to eat less Sodium or salt in food or may have been asked to reduce Potassium, but sometimes that means that levels can go a little too low and so needs readjusting again often by finding a good balance of foods that just keep the figures even and prevent the symptoms.
If he has Anaemia or B Vitamins or Vitamin D deficiency again food changes and the right supplements will improve his symptoms. Again the GP may state normal but he could be at the low end of range or insufficient which causes symptoms and needs to be reversed. A fact that most GPs sadly seem to ignore. May I suggest if he has a deficiency and requires prescribed supplements that you ask the GP for the liquid rather than tablet form ( which is available on prescription in the UK) because it will be easier for your father to absorb and improve the issue more quickly.
If your father takes a PPI like Omeprazole it is also a good idea for him to take a daily B Vitamin anyway as a liquid or spray because low stomach acid affects how well B Vitamins are absorbed which also has a knock on affect in our absorption of Vitamin D and Iron.
If he has borderline low or Deficienct B Vitamins it is then important to request the GP to order a PA antibody test, as many people over 60 can have low PA antibodies which causes low B Vitamins and Folate consumption and health may require some injections. I get these myself to reduce my brain and nerve symptoms and recurring Anaemia.
If all of that is normal and his brain scans and tests for Dementia have been clear the next step is for them to check for thyroid dysfunction, again with blood tests.
You may need to be polite but firm to get the blood tests with some reluctant or less up to date GPs. If you don't go to appointments and sit in with your father as his Medical Advocate yet , it's would be a good idea to start now . It allows you to ask questions he may not. witness what the GP does , answer things your father may have forgotten (after reminding him) and be more proactive if the GP is gaslighting.
I hope you get things sorted soon, believe me when I say it's unbelievable how severe symptoms can appear with deficiency and imbalance but also amazing just how quickly things like brain fog which you thought would last forever can disappear too.
Gosh that took some reading Bee but a very comprehensive reply. I do agree about some GPs ignoring test results which are only slightly out of the norm as I've experienced this in the past and it had significant implications.
That was a very extensive and analytical reply. Thank you. I wish you were my doctor. My GP, in the past, has disregarded my concerns when my blood results have been higher than the normal range. I ask for copies of my blood results because I think it’s important to be proactive rather than reactive and hopefully prevent/improve a medical problem. I will, in future, keep requesting a copy of my results and raise concerns with my GP.
Wow, thank you, Blearyeyed , for taking the time to reply with such detail.
I am planning a long telephone conversation with my mum with a cup of tea in hand to go through everything with her.
Some bits have already been covered, but I do take on board your comments about asking to see the results to look at how normal my dad's 'normal' levels are. We've just requested B12 and folate tests to be done as my dad ticked all of the boxes of having a B12 or folate deficiency, but apparently his levels came back normal.....
Kidney function blood test probably done at least six months ago, but don't think there has ever been a check done on his magnesium or calcium. Will request all of those. He takes Solgar vit D everyday as he doesn't go out much, so vit D levels should be good.
His thyroid was removed around 52 years ago, so he's on regular Thyroxin - interestingly his Thyroxin dose had NEVER been checked until very recently when it was reduced slightly. I did read once that wrong doses of Thyroxin can lead to heart problems.
Just a couple of questions - you mentioned a PA antibody test. What does the PA stand for? And what group of medications are you referring to when you mentioned PPIs?
As I mentioned, the GP is pretty good and arranges tests and home visits when needed, but yesterday her healthcare assistant came out to see my dad, and when my mum mentioned his confusion, excess peeing and sweating at night, the healthcare assistant asked my dad to count backwards from 20, and to tell him the days of the week. He did both of those things perfectly, so the healthcare assistant just looked baffled and couldn't give any explanation for the symptoms, but equally didn't request any tests to be done to investigate further - not very encouraging.
Thanks again for taking the time to reply. Will let you know how we get on.
Hi. Just a small thing to add, which may or may not be helpful. I have been aware for a while that I too seem to be peeing more than I’m drinking.
I was asked recently for repeat blood tests because the last ones showed low potassium and very low sodium. I looked up low sodium and it suggested dangerously low levels were very dangerous and affected the brain.
I stopped my diuretic (asked my heart consultant first) and my levels are normal now.
I was on them for high blood pressure and am on others now for that and so that’s why I think I won’t need those again.
My mpther in law in her 90s suddenly started getting very confused and hallucinating. She was certain the man on the TV was talking to her; she could hear babies crying all night (She was in sheltered housing); she insisted there were riots outside her house. Her GP walked into the house and without even examining her, instantly said "Urine infection". It's very common in the elderly and often causes confusion. She was right as rain a few days later on treatment.
The previous replies have been very comprehensive but I thought I might add my experience with Furosemide 40mg a day for several years. I finally asked to come off it and was surprised that stopping taking it made no difference to the amount I peed whatsoever. I still have to get up 6 times a night to pee very small amounts each time. I am usually ok in the daytime unless I have a UT infection.
Furosemide was prescribed after my heart failure (AF).
Combined with an enlarged prostate, the need to urinate became intolerable. I also developed gout in my fingers from nowhere.
Frankly, I just reduced the dose then stopped taking it altogether. I informed my consultant. He said fine, provided my heart rate was under control. It is, and I feel so much better.
Crucially I can now hold the pee in for a while whereas, before, it was impossible and potentially embarrassing. Admittedly It never came to nappies, thank goodness, but an expandable pee bottle is in the car door pocket !
Cutting out caffeine and fizzy drinks is also a help , but I still wonder where all the urine comes from …
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