High Potassium/Hyperkalemia

[MWIC]

Hi all

Has anyone had Hyperkalemia and if so how did you feel. My last 4 blood tests have shown high potassium 5.5, 5.9, 6.3. I have also been having symptoms - odd heart-beats showing similar to LBBB - little m’s, but worse some episodes of horrible dizzyness feeling like I’ll pass out - really interested to hear from anyone and how you felt and how it was solved. feel like I need to get it down well below “high” to gauge whether this is the reason for how I’m feeling or if something else is the cause - thanks all

[MWIC]

should have said I had a heart attack 2 1/2 years ago - - all good since, but also AFib and had an ablation in December - no AFib for last 3 months and also Type 2 Diabetic though otherwise fairly fit and active

[Lezzers in reply to MWIC]

My husband's potassium level often goes too high though not as high as 6.3. The last time his level got to 6 his GP said any higher and she would have sent him to hospital, he's never had any symptoms though. My husband has previously had his candesartan &/or spirolactone stopped and told to drink lots of water to pass the potassium through his system. He's now permanently off spirolactone & he now takes Entresto in place of the candesartan.

What are you medical team saying about your high levels?

[Murderfan58]

I have been on low potassium diet from over 10 years no idea what my figure was but my then GP gave me a list of high potassium food to avoid and things that I could eat . And how much milk and or yogurt I could have in a day.

These are the high potassium foods I can remember. Because I don't buy then can't remember all of the.Only have boiled potatoes as potassium is water soluble and when drained the potassium is drained away. No chips,baked potatoes,roasted or crisps .

Bananas

Mango

Pineapple

Dried fruit

Spinach

Avocado

Nuts

Tomatoes

Mushrooms.

Chocolate

Can't remember anymore

I haven't been able to give up toms or mushrooms but only by a small pack of each every month. And spread them out.

Best ask your GP or cardiologist for a list of high potassium foods. The list I had had alternative foods I could have .

[Western1234]

Murderfan58 , your list is really interesting, as my last blood test I had potassium of 5.2 (the top of the normal range where I am is 5.5). As a result I was not given Spirolactone.

My favourite foods are nuts and fried fruit 🙈.

I won't change my eating habits too much as I have given up so many foods I like for my health, giving up nuts (unsalted) and sultanas is a step too far.

MWIC , I would maybe have a look online for a list of high potassium foods similar to the list provided by Murderfan58 and consider whether, like me, your husband has some of his favourite foods on the list. You and he can decide whether to reduce or swap the certain foods in an attempt to reduce potassium levels.

There's so much to learn regarding heart issues isn't there?

I think I may become a bit of an amateur expert regarding my condition at this rate.

Western

[Lezzers in reply to Western1234]

Hi western2234

We have a list of high potassium foods given to him by the hospital some years ago. It's worth asking for a diet sheet yourself as even the way you cook some foods alters the potassium levels. Whilst it does help with keeping potassium down diet doesn't always work as your medication can increase it, in my husband's case both candesartan & spirolactone have been the culprit. However when your levels are as high as 5.9, 6.3 your medical team should be getting those levels down asap.

And yes you're right you will become an expert in your heart condition, we've been dealing with my husband's heart condition since 1997, potassium issues since 2008 & heart failure since 2012!! In educating ourselves we can ensure we get the best treatment etc and know where to find the most up-to-date info. I can truly say that I probably know more about heart failure then a lot of GP's! Sounds big headed but a lot of GP's don't really understand heart failure at all.

Good luck.

Ps: nuts & dried fruit are both very high in potassium!

[Murderfan58 in reply to Western1234]

I am becoming an expert in my neurological condition. I have the rare hereditary Hyperekplexia gene mutation SLC6A5 type 3. My neurologist has never had a patient with it nor his colleagues. It was only because he had my whole genome genetically tested that I finally had my diagnosis in April 2022. I have learnt such a lot from the Facebook group with HPX as it's shortened to. I am no longer weird and now understand why my body has and still does what it does. And what the future holds . I am teaching my neurologist everything I learn.

Took me fighting since 1988 to finally get disability benefits after my PIP tribunal in August 2023 but the judge awarded me enhanced living and enhanced mobility indefinitely and back dated to March 2022 when I asked for the forms PIP gave me zero on everything. The tribunal gave me 13 for living and 12 for mobility.

Please everyone make sure you are getting all the benefits you are entitled to. Thanks to the Brain Charity in Liverpool who got me a solicitor pro bono that I could go to tribunal.

Also thanks to CA Southport that I get some pension credit as I became a pensioner end of April. And get full state pension. My husband Nick paid in lit of NI contributions from 1974 until he died in 2024 aged 47. I am entitled to 48p per week from his contributions. Mustn't go made spending the 48p 🤣.

Don't forget you are entitled to a blue badge even if you don't drive . I had my first in 1988 when it was orange. Also senior or disability Railcard which gives you a third off train fares. And the travel assistance is great. I could travel without it.

Veered off the subject Western but I don't want anyone to have to fight for as long as I did for what you are entitled to. There are a lot of benefits you can get please get everything you can . I don't want anyone to not be able to have the heating on or have the money worries I have had since Nick died.

This country gives away millions abroad about time they looked after people in this country.

[Western1234]

Lezzers re: nuts and dried fruit, there's only so much I am willing to forego. I don't eat chocolate, never thought I would be able to say that, let alone walk away from a piece of chocolate, that's my line in the sand!😂

However, I may have to change my attitude as my heart failure (HF) nurse said that Spirolactone is a really good medication for people with my condition (HF caused by dilated cardiomyopathy) - prognosis wise. Who wouldn't to improve their prognosis?

At this rate my diet will be only All Bran, water, decaff coffee, and non starchy vegetables! 🙈 Oh, and lot of tablets

[Lezzers in reply to Western1234]

I get it. Liquorice was my husband's favourite, he hasn't eaten any since 2008!! He did have a banana a couple of years ago as his potassium was actually low for once, sadly that didn't last too long!

Tbh, his first, very highly qualified, HF nurse said diet doesn't play too big a part in increasing/lowering your potassium levels but to be sensible about it. So as an an occasional treat he will eat a handful of nuts (unsalted of course!) & a very small amount of liquorice or a couple of dates, which he really does enjoy, though not all at once 😳🤣

[Manhattan1]

last year i was admitted to hospital after originally presenting with chest pain.. was put on an IV drip and found out that it was potassium/chloride.. no one told me why.. but discharge letter mentioned Acute Kidney Injury.. so i take it i was given it due to a major kidney problem.. i suffer from CKD stage 3b so that experience certainly didn’t help 😂

[soppysokes in reply to Manhattan1]

was both potassium and cloride high?

[Manhattan1 in reply to soppysokes]

i thought if they we’re giving me potassium it must’ve been low?

[soppysokes in reply to Manhattan1]

ah sure, I readit asthe problem was potassium and cloride!!