Hello everyone
Hope you are all well.
Can anyone help me please?
I have ET and my potassium levels are creeping up and concerned my kidneys will be affected. Does anyone know if I try and reduce potassium levels in my diet, would makes any difference? I love fruit and veg and unfortunately potassium is in most of these food groups.
I appreciate any help
Thank you
mich 
Hi Mich, read up on psuedohyperkalemia. It can be associated with ET and you may not have raised potassium at all. Try not to worry and ask your haematologist for a different test to check potassium.
Stay well🙂
Thank you Jessie.
The consultant rang with my platelets (1135) and potassium (5.6) levels today. He explained that if the count reaches 6.0 then I would be hospitalized which I obviously don’t want and will try my best to avoid. My potassium levels are always high.
Thanks again 😊
I agree with Jessie.
If you look to the right of your post under ‘Related Posts’ you will see this has been discussed before.
Your haematologist needs to test your plasma potassium levels, not the serum potassium- which is the usual test we all get. If he thinks that you need treatment with a level of >6, without checking this first, I would want to find a different haematologist, as his treatment could be potentially dangerous. My haematologist told me elevated potassium is common with ET, he couldn’t remember why so I looked it up. Basically it’s something that occurs in vitro, in the test tube. It does not reflect what’s happening in your blood. Lots of research papers on it. You could send one to your haematologist and educate him/ her 😀.
My potassium levels are usually above the top ref range and I do not restrict potassium in my diet either- absolutely no need to.
Don’t worry about it. It’s normal for us ET folk.
Thanks very much.
It’s so confusing when we follow the advice but the advice is incorrect....
Take care.
Hi Jessie ask Gp to do a plasma potassium instead of the normal serum potassium! if your platelets are high it pushes the potassium and calcium into the serum causing an inaccurate reading /result. A plasma sample will give a accurate result.
Thank you for your reply 😊
Why on earth don’t they know this already? I hemo requested the test and not the GP. 🙈
Take care 😊
You would expect a haematologist to know this. My son was diagnosed with polycythemia aged 14 everytime he was admitted to a general hospital there, wS always a big worry about his potassium, despite me telling them to plasma sample! His platelets reached 1900 at one stage. Knowkedge gives you control. 😊
That’s very true. I do try and educate myself but there is a lot of conflicting advice!
I hope your son is ok.
All the best to you 😊
There really is, it's so frustrating! If you can get referred to a MPN specialist. Conor is at addenbrookes in Cambridge and we have seen Claire harrison, so very lucky to have had the best. These past 3 years have been a steep learning curve but we are on top of it now we hope 🤞
I am also under Professor Harrison and feel privileged 😊 I see her (or someone in her team) every 6 months.
Best wishes to you both 👍
As Jessie says there have been a lot of useful posts about raised potassium levels and whether the readings are correct.
If however the consultant concludes you do need to lower it he/she should either give you a diet sheet, as mine did, or perhaps refer you to a dietician. Quite a few NHS hospitals have low potassium diet sheets on line if you search. But having had to do it for 3 months I would wait until the consultant confirms you have to as it's quite limiting.
Thank you for your reply. I have printed some off tonight and I would struggle to follow low potassium diet, which is why I thought I’d ask first if anyone has had any success with it.
Have you followed this diet?
Thank you 😊
Yes I had to do it for 3 months while on the steroid Danazol to try to stabilise my red blood count. Consultant never confirmed it caused potassium problem but I was very suspicious. It was difficult as I was having to cook normal family meals for rest of family. Most difficult was keeping to one cup of coffee a day and it was a very monotous and counterintuitive diet healthwise. However my potassium levels did come down but slowly.
However drug was stopped abruptly as my liver was being affected. I am now on rux and potassium levels stabilised.
Hello,
Are you on medication? Anagrelide carries a risk to the kidneys - rarely, but it does happen.
Best wishes,
Lucy
Hi Lucy
Thank you for your reply. I’m only on 75mg of Asprin every other day.
😊
Hi Mich. I have the opposite problem at the moment - at 3.2 my serum potassium is too low. I'm having a follow-up blood test to check the levels again in a few weeks. There's never been an issue with my potassium levels before and my diet is potassium rich - lots of fruit and veg, plus nuts every day...
Thanks for replying.
I’ve not heard this before in someone with ET I hope you are well though.
Take care 😊
I have PV Mich. I had no idea as I'm feeling perfectly fine. It's a strange one.
I have no clue if this is correct or not but at my last blood drawing the phlebotomist told me not to pump my fist or tap on my blood vessels because it raises the potassium level. I do not know if that is true or if so how much it could affect your level of K+. Best of luck to you.
I have slightly raised potassium but thats because I am on spironolactone for another condition. My kidney levels have been around the 5 mark for years and all is ok but I do avoid things like bananas, kiwis, oranges and low salt replacements and also check whats in your snacks, like Pringles. I know if I have had too much potassium as I get a bit of arrhythmia but that is a very rare occurrence
Jenny - you are right to highlight the low salt replacements. I used it regularly in cooking, albeit in small quantities, thinking it was a healthy option for the dreaded salt. However by chance I read that it shouldn't be used with certain blood pressure medications, one of which I was on. I ditched it immediately and then when having to go on the low potassium diet (the diet sheet came via the haematologist from the renal department) it was the one item actually in bold not to be used. Although my levels are now reasonable I still avoid the really high potassium foods - bananas especially. I'm also careful with chocolate and potato crisps and my great love marmite. I can't have paid attention at school because I was very taken aback about the link between potassium and various foods and cooking techniques .
I think this already got covered, but to be clear - ET can result in higher potassium levels being detected. The KISS version is platelet breakdown results in the release of potassium. Too many platelets = too much K in labs (AKA - Pseudohyperkalemia).
ClubDino previously posted this article.
sjkdt.org/article.asp?issn=...
Since you are concerned about it, definitely follow up with your hematologist for a more thorough review and explanation. If warranted, the doc can order additional tests to rule out issues with kidneys.
Thanks very much 👍
Potassium Tips
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