E T and potassium

[Cokopops]

Hi all. I was diagnosed with E T few months ago. Haematologist is waiting for Covid to slow down more to start treatment as it will weaken my immune system. Meanwhile had blood tests with my surgery and called back because my potassium was too high. Told to go on low potassium diet and more blood test. Potassium still high and called back again and carry on low potassium diet. Spoke with haematologist this morning and he told me that the reason my potassium “shows” high is because of the high platelets.... And my potassium is normal! Can’t believe I didn’t eat tomatoes, potatoes, spinach, bananas, nuts etc....for weeks! Just thought I’d share this with you all. Meanwhile my best wishes, stay well and safe

[EmeraldA]

Hi Cokopops, I had a similar experience and yep high platelets and because ur blood sits around langer to be tested causes this higher reading. I was relieved. Thought one less thing to worry about 🤣

[Cokopops in reply to EmeraldA]

You’re right. One less thing to worry about! Thank you for your reply. Keep well!

[Deefen]

Wow! That’s interesting!

[stevenjust]

Hi, I have the same problem, 4 times I’ve been called by the on call dr telling me to go A&E as my potassium is too high, each time I’ve gone it’s fine. My consultant also said it’s to do with high platelets, mine are currently 1450.x

[lynnieb]

You could be me! My potassium was high for years. I'd get phone calls in the night saying to get to hospital IMMEDIATELY, as my lot was so high. THEN a locum GP said to me "you DO know that your platelets are sky high (1400)?"

I had no idea, but apparently, my platelets had been really high for 3 years, and I shouldn't been under the care of a haematologist. I got an emergency appointment, (and urgent BMB) and the consultant explained that high platelets gives a false hyperkalaemia reading. I actually had Essential Thrombocythaemia. For 3 years I was terrified every time the phone went, I was being called to hospital. That my 'high potassium' would kill me.

That my GP KNEW my platelets were sky high, and didn't refer me to a haematologist is unforgivable. I will be starting on medication at the end of this year. Other serious health issues complicates things somewhat, though.

I totally understand what you have been through. Good luck

[Cokopops in reply to lynnieb]

Thank you for your reply. It’s frightening all this. Like you say, unforgivable of your doc not to refer you . Guess I’ll question everything more in future. Hope you’re doing ok now. Stay safe

[hunter5582 in reply to lynnieb]

Unfortunately there is a lot of ignorance in the medical community about MPNs. However, thrombocytosis at that level is obviously a significant problem. It sounds like a case of negligence rather than ignorance. I would say the GP should get a resounding "You are fired!" There are plenty of other docs out there who will provide better care. Glad to hear you got the pseudo-hyperkalemia sorted out.

[lynnieb in reply to hunter5582]

I will likely go on some form of medication at the end of the year. Either a chemo tab (can't remember its name) or beta interferon...(she says, with confidence...?) My problem is I also have neurofibromatosis very severely. I have hundreds of tumours on my nervous system, otherwise I'd' ve started on medication before now. Finding a drug that doesn't impact my nf is tricky. Of course, waiting three years because my useless GP never informed me/referred me, didn't help matters!

[hunter5582 in reply to lynnieb]

As it happens, I also have neurofibromatosis (Type 1). Which type of NF do you have? It does matter as NF can impact the MPN. Something I am learning about myself. One known factor is the the NF1 mutation increases risk of leukemic transformation. NF1 is a RASopathy - causes dysregulation of the RAS-MAPK pathway. This is another kinase system downstream from the JAK-STAT pathway involved in MPNs. RAS-MAPK and JAK-STAT signalling both impact tumorigenesis and apoptosis in a negative way.

After years of nothing but CALs, I had a NF1- related CNS tumor along my optic nerve in the occipital lobe found at age 63. Turned out to be a Grade 1 Adult Pilocytic Astrocytoma (very rare). It was successfully removed in June 2019. The docs recently found another tumor on my mandible. This is likely an ossifying periosteal neurofibroma. It is be removed on July 13. We will find out for sure what it is then.

We are a rare subset of a rare disorder - both MPN and NF. Not a lot is known about people who have both. There is one other person on this forum I am aware of -Adlon57 - who has the Shwannomatosis form of NF. So far it is just the three of us on this forum that I am aware of. it does help to share resources and experiences and there are not many of us in this situation.

If you do need meds for the ET, then I would recommend you avoid hydroxycarbamide (can explain why if you are interested). Ruxolitinib may be OK, but do not assume it is. Rux will impact functioning of the JAK-STAT pathway which may have downstream effects on the RAS-MAPK pathway. For myself, PEGylated Interferon would be the first choice when I need medications again. There is history behind that choice we can chat about later if you wish. I would note that many people with ET do not need meds to reduce the thrombocytosis. In the absence of symptoms, you may not need to "sanitize" your blood cell numbers.

It is VERY important to consult with both a NF Specialist and a MPN Specialist. Do whatever it takes to make this happen. Our situation is more complex and requires specialized knowledge to provide proper care. I go to Johns Hopkins Hospital for both of these (MPN Clinic and NF Clinic). If at all possible, go to a facility that has both specialties available. Dont know if you already have the appropriate specialists for both, but just in case Here are a couple of resources:

mpnforum.com/list-hem./

nervetumours.org.uk/about-u... (UK)

nfnetwork.org/understand-nf... (USA)

Do please stay in touch and let us know how it goes.

[samiris in reply to lynnieb]

I've seen other GPs careless about blood test results labelled as HI in the report. Unforgivable, misconduct. In Canada, many GP have specialty in ALL medical branches, don't care referring the patient to a specialist when is critically necessary.

[Uzza]

Yes, you will get false high readings with ET.

Cheers,

Uzza

[hunter5582]

Glad to hear you got this sorted out. There are docs/nurses who just do not have the knowledge re. MPNs to respond appropriately to issues like this. It is important to consult with a MPN specialist (not just a regular hematologist) to ensure optimal care.

There are options for ET treatment that do not compromise your immune system. Some docs now prefer PEGylated interferon to hydroxycarbamide (hydroxyurea) due to the relative risk/benefit profiles. PEG-int does not compromise your immune system amongst other things. Be sure to review all of your options with your provider and have the risks/benefits of each choice thoroughly explained so you can make an informed choice. If your hematologist is not a MPN Specialist (most are not) be sure to consult with a MPN-expert doc to optimize your treatment plan. Here is a list of those docs mpnforum.com/list-hem./ .

FYI - I was diagnosed with ET over 30 years ago. A lot has been learned since then and treatment options are much better. I have learned a lot since my ET progressed to PV. The most important thing is that assertive patients receive higher quality care. Passive patients do not. Doctors advise and recommend. Patients decide. You have to be willing to advocate for yourself and assert your right to make the decisions regarding your care in order to receive optimal treatment. l

Al the best to you on this journey.

[Mich10]

Hi the exact happened to me! My GP didn't realise the impact ET has on potassium.

Hope you stay well x

[Indigo42916]

I got several high results for potassium, and they were incrorrect. It turns out the blood sample was mishandled. It happened several times, and consistently occurred at a certain lab I was using.