Potassium levels?

[Plavers]

Has anyone had problems with their Potassium Levels? I had a high level on one of my routine blood tests and it was followed up by another test - due to COVID and GP restrictions I didn’t get the results until four weeks later. I was told the results were still too high and that I should proceed immediately to the nearest A&E! I was fast tracked at the local ( I was out of my normal area working) Hospital given another Blood test and ECG in case of Heart Failure - however everything was normal and I was discharged. On my next appointment (telephone) with locum consultant I was concerned that it could happen again. Doctor thought it could possibly be tied up with Vitamin B level. Anyone had anything similar happen?

[DJK12]

Yes I had a number of high potassium results including being phoned by out of hours GP service (UK) to say a blood test taken that morning was dangerously high. I had to go to the nearest hospital asap and another test and ECG was done. Potassium levels were luckily down and I went home. That and previous high levels were put down to way blood had been collected from GP surgery and then rattled around in a van before getting to lab. Seems to be one reason amongst many for high readings.

If you do search on potassium on this site you'll find a number of posts about it. The topic pops up quite frequently.

However a few months later I had consistently high results and had to go on a low potassium diet for three months. Possibly caused by steroid Danazol which I was on for 9 months to try to keep haemaglobin levels up. When I came off it potassium settled but consultant wouldn't confirm this was reason.

Hope you get to the bottom of it.

Diana

[JediReject in reply to DJK12]

You summed it up well there Diana and as you say sadly a familiar tale , happened to me a couple of times. Had bloods done remotely and then a few hours later at home the dreaded call to rush to local A &E when for whatever reason the reading is incorrect. How this happens is beyond me and its always potassium. I wouldn't mind but I detest bananas.

Apart from the obvious 'why' is it incorrect, the main issue is the wasted time spent in the Emergency which is bombed out to start with. Last time I went at 7pm got bloods done by 8 or 9 pm and by 1 am I was so cheesed off waiting because "only a doctor can tell me the result" that I signed myself out. On leaving a nurse turned and said btw your potassium level is fine. What a system.

If it happens again I doubt I will bother getting it rechecked . . . But then again knowing my luck it will the one time when I've od'd on bananas.

Chris

[DJK12 in reply to JediReject]

It never happened during the time bloods were done at the clinic. I actually prefer going to the GP as it usually means only an hour at the hospital whereas before with lab delays it could be three hours, but the potassium problem is a nuisance.

Clubdino has pointed out the other possible cause.

I was particularly cheesed off when I genuinely had a problem as the diet is very restrictive and not nutritious - plus I loathe bananas and rarely eat them, even in something, except out of politenesss. They certainly weren't contributing!

Diana

[JediReject in reply to DJK12]

All the different reasons make sense I guess but given we are on the face of it more prone to a false reading I'd expect my Haematology team to be aware of this. Mine have been post SCT to eradicate my MF so dunno what caused the spike.

It's just a pity that on the couple of occasions it happened I'd already arrived home at tea time before anybody checked the results. I prefer my blood results to be back prior to seeing my consultant.

Anyway with Covid they mostly are now because they're done a few days prior at my GP surgery in readiness for a virtual appt and are seen by the blood nurse first before she faxes them to the hospital. Hopefully she would pick up any extreme highs or lows. I'm pushing for this to become the norm for my appts with a physical appt at Haematology annually. . . . . . Chris

[Wyebird in reply to DJK12]

Hi I just read your post and noticed you were given Danzol to increase your haemoglobin. What level was your haemoglobin and did it work?

[DJK12 in reply to Wyebird]

Yes in that hb levels kept at about 10 from a low of 7.5. However after 9 months it affected my liver and I was taken off it immediately and moved to rux with EPO injections added 6 months later. However it was a huge relief to come off it as chronic neuropathy in my legs and feet became acute leading to a neurologist and more drugs - that didn't work. The potassium problem was the final straw and it went back to reasonable levels two weeks after Danazol was stopped. I'd lost a lot of weight by then.The neuropathy returned to being a bearable chronic version and I then had to wean myself off those drugs We all react differently to drugs but although the consultant wouldn't say they were definitely caused by the steroid it seemed a bit coincidental. Diana

[Wyebird in reply to DJK12]

Lol on this site you find loads of people with same side effect but aren’t considered to be MPN symptoms by the medical profession. You had really low hg. Is Peg an option for you? My hg hoovered about 93 and is now 107 since Peg.

Wishing you good health x

[DJK12 in reply to Wyebird]

Had Peg for 6 months which greatly helped platelet count but then had a very very rare reaction to it - massive cytokine storm - so it had to be stopped. Platelets stayed down for quite a time but so did hb levels hence Danazol. Rux has been much more successful but hb remains a problem and as ferritin levels far too high from transfusions EPO injections are the good alternative for me meantime. Glad Peg doing well for you - many people seem to find it an excellent treatment - just bad luck I couldn't stay on it.

[Wyebird in reply to DJK12]

Oh I’m so sorry to hear that.When I was initially diagnosed I was under the impression all would be good. In fact one medic actually said think of it as diabetes. Yet on this site you get to know about all those unfortunate enough not to be problem free. Xx

[DJK12 in reply to Wyebird]

I should have explained so not to alarm anyone but I had 25 years reasonably trouble free on Hu then Angrelide, after diagnosis in 1985 - usual symptoms and side effects but life went on. Unfortunately I then progressed to post ET MF but am suspicious that very agressive treatment (very large doses of busulphan) at diagnosis may have contributed to my problems. That treatment would never happen now but was considered good practice then - consultants hadn't come across anyone so young then with ET and were doing their best at that time. I actually consider myself lucky!

[Ameliav in reply to DJK12]

I have it all the time and apparently if you have high platelets it could be false reading

[clubdino]

You most likely had pseudohyperkalemia due to your MPN. Basically, it is when the potassium is falsely elevated due to excessive blood cells. There is quite a few posts about it on here if you search. Also you may want to print off a google article about it to give to your doctor so he understands.

healthunlocked.com/mpnvoice...

[Sherin-M]

I had this occur, Mine was caused by eating 1 banana a day. Cut back to 3 a week solved it.

[Amethist]

Having MPN can lead to mistaken high potassium. I had this too a few years back, but on checking the scientific papers this is a common phenomenon with MPN. Lots of papers written about it, here are a few.pubmed.ncbi.nlm.nih.gov/340... It seems blood cells can rupture in the test tube after the sample is taken/ or during the blood draw, thereby releasing their potassium, and giving a false raised level, even though your real levels are actually normal. If I remember correctly a blood plasma test rather than the usual blood serum test is a better test to check for this .

My haematologist told me my raised potassium levels were very common in MPN patients and nothing to be worried about. It’s something that happens in the test tube, not you.

All the best .

[Gaithersburg]

Yes I had an emergency call from my GP, when I had a routine blood test, and told me to go straight to hospital as my potassium levels were dangerously high. After loads of tests, I was discharged as my bloods were shaken when they shouldn't have been! What a relief!

[Andyf24]

I had a near identical experience. For me...it turned out that the phelbotomist at my local surgery (virtual clinic for me) had used the wrong blood collection tube, they should be "lithium lined" I think is the term.

Because the wrong one was used , my bloods changed within a few hours and spiked the potassium reading.

I now have tubes that my consultant gave me so I take one in with me each test just in case

[SoledadBarcelona]

Yes, I had the same problem two weeks ago. My GP checked the ionic level in 24hours urine and serum calcium and potasium and everything was O.K. what happened in my body? I think that was the vitamine C I had been taking. It can elevate calcium and potasium.

[SoledadBarcelona]

Yes, I had it but in my case I think it was due to my vitamine C. I was taking it

[Tintins]

Yes, I have also experienced high potassium levels . I was advised by the haematology drs that it was a test tube artifact caused by high platelets.

[LondonWife]

We have had this twice where my husband has been told to go immediately to A&E etc for high potassium, all very worrying at the time, but now we know if they say that it is just that they left the blood sample on the windowsill too long etc as it is always fine! Obvs they don’t do this at Guys but with our local hospital things are all a lot slower!

[hunter5582]

You may have encountered a bit of ignorance about MPNs and pseudohyperkalemia. Thrombocytosis can cause spurious elevations in potassium labs. This is a well-known phenomenaacutecaretesting.org/en/art...

nejm.org/doi/full/10.1056/N...

Unfortunately not all docs are ware of this issue.

[jes28]

Yes, my potassium level was high often. Then I read on this site about it:

sjkdt.org/printarticle.asp?...

Another person posted this reply to someone else's question.

I took this article to my hematologist, and now they are not concerned about my potassium levels. I guess that's a good thing. Good luck.

[Annula]

Not so far here - got another blood test early November so will check with my doc after.