Hi everyone I don’t post often but always read posts would like to ask your advice over the last few months my potassium has been high and have had a ECG which also showed this I had another ECG last week waiting on results
My Gp seems worried and did get a emergency appointment with haematologist who wasn’t worried said it’s because my platelets are high been between 700 800 recently gone down to 600 due to higher does of interferon hospital won’t me to go up more after I get this ECG results and good news isi have been referred to guys has I don’t have a MPN specialist never see or speak to same doctors twice has anyone else had this problem has it’s worrying me don’t won’t a heart problem has well have a good bank holiday weekend thanks Poppy
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Poppy6060
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Glad to hear that you have been referred to Guys. You definitely need consult with a MPN Specialist.
Unfortunately, many doctors are unaware that thrombocytosis can cause Pseudohyperkalemia. This is a false read of elevated potassium levels that is a lab artifact. There are alternate labs that need to be done to get an accurate potassium read when you have thrombocytosis. While the lab might know what to do if you ask, the best source may be a MPN Specialist.
Can confirm. I get a panicked phone call from my doctors after every blood test convinced I need emergency care immediately. All due to the high platelets affecting the lab test. I have to explain every time as they say they can't ignore the warning on their systems.
I encountered exactly the same problem with Pseudohyperkalemia leading to a false read of elevated potassium. This was particularly prevalent when my platelet count was very high. My clinical team recommended an additional blood draw using a PST tube that contained lithium heparin (Light green top) to avoid the lab artefact. I didn't get any red flags for elevated Potassium after that, so I assume it fixed the problem. But as Hunter mentioned, best check with your MPN Specialist.
Just to add to my earlier response regarding the use of PST tubes for blood collection to avoid errors in potassium measurement. Blood samples for blood chemistry are typically taken in SST tubes (yellow top) which contain a clotting gel. For patients with thrombocytosis, this can result in an increased release of Potassium during the clotting process and hence an error in the measured Potassium. The use of PST tubes avoids the clotting process. Well, that's my understanding but again please check with you MPN Specialist.
thanks Welshuw i hope this will sort itself out going to ask for next blood test to be done at hospital and just hoping ECG results come back normal this time
I have Poly Vera and my potassium level are high, I take Lokelma to keep it in check also with low potassium diet. When doing blood workup at labs I make sure they use a butterfly needle (small) so as not to have a elevated blood K level.
Yes, my potassium levels run slightly higher than normal, i.e. 3.0-5.0. At my last oncology appointment it was suspected that it was due to platelet levels as other than Jakafi, I'm on no other medications such as beta blockers, Ace inhibitors, antibiotics, too name a few, that might contribute to higher levels of potassium. My potassium levels have remained consistent with each potassium test taken over the last several months and all other results from my comprehensive panal were within normal ranges.
We discussed limiting foods with high potassium levels and staying hydrated. You can google search for foods and beverages high in potassium as well as those that help to lower potassium. Drinking more water well definitely lower potassium. There are other options too...Valtassa, to name one, ( a potassium binder in the stool), will sometimes be prescribed. It comes in a powder form in packets that you mix with water or juice. It will cause bloating and constipation, but within 48-72 hours your potassium should come down.
If you've been experiencing Arrhythmia, (heart palpitations) and muscle weakness from Hyperkalemia,( high potassium) and your numbers are very high-5.5 and perhaps higher, a potassium binder my be
thanks for answering my post this is all new to me looking into diet and may need a potassium binder my doctor really frightened me saying about dialysis my numbers were 6 last week but got to have another blood test next week
My potassium levels are always raised. However, thanks to an mpn specialist I found out why. When they take your blood it's left hanging around waiting to be tested and the ET causes it to turn spurious. I got a true reading when the doctor ordered it to be done quickly on a slow heparin spin (his words) the result was normal. If you're in the UK I've since found it the phlebotomist calls it 'orange top' which is just the different coloured top they put on the sample. My haemotologist now is useless and never orders it this way so he gets the spurious reading. Hope this helps.Ian.
Hi conno61 thanks for your reply these have helped greatly I have a blood test tomorrow was told to have a green top test doctor never put this on form and doctor who ordered it his off this week so will be a standard one it’s all hard work
That was good you got a MPN specialist to do a special test if only once I will be glad to see one at Guys has my doctor at hospital isn’t worried not a specialist in our field but my GP is concerned what with the ECG reading I have been reading up on this and we do need that specialist test hope you keep well and thanks for all the wonderful helpful replies Poppy.
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