Need some feedback on my situation

[Winterella]

Ok i need some advice i feel in the dark atm:

I am 36 y/o woman. No other issues.

Background: platelets between normal high range 440-470 for more than 10 years!! Had anemia from childbirth blood loss which resolved.

My hematocrit/hemoglobin/wbc all in normal range including normal spleen and liver.

Jak2 came back twice inconclusive (unconfirmed suspicion) with recommendation to repeat.

Waiting for the third.

Not taking any drugs.

Spoke to my hematologist today - he sent me to all kinds of blood tests to see why my plt are borderline high, also another jak2 test ontop of the one i’m waiting for so he could have two readings.

He said he doesn’t want to do a bone marrow biopsy atm and also i shouldn’t take anything.

I don’t get why, it almost seems like he’s not sure anymore i have mpn cause my last count was 446 which is normal high.

Very VERY confused

[Aime]

Hi Winterella, welcome to this forum. If you have a look on the MPN voice website, you will get trustworthy information about blood counts, etc. Even if you did get an MPN diagnosis, they usually develop slowly. Some people have no symptoms, some have many but you will get the information you are seeking from the website.

It is always worrying and confusing when you are waiting for a diagnosis, so keep posting and update as to how you are getting on. You will get loads of support from the lovely people on this forum.

When you attend consultations, try and take someone with you as discussions are harder to remember when you’re anxious. Write down the questions you need to ask and insist on answers - then you will worry less.

Take care, kindest regards Aime x😻😻

[fee13]

There is another mutation that perhaps could be checked, CALR, this is also a common one in MPN's. There are also a small percentage that have no mutation at all, they're called 'triple negative'.

Please try not to stress. Your platelets are only marginally high and have remained consistent for 10 years which is extremely favourable, normally they would have consistently climbed over this time. All other counts are normal which is another terrific sign.

We're here for you and I hope everything will be fine.

[Ebot]

Hi there.

I imagine you must feel very frustrated about not having any clear cut explanations yet. And understandably it’s causing you some anxiety.

As mentioned before - and as fee13 highlights again - what matters is the trend in your platelet counts. Although high, they are, as you point out, just within normal range and they haven’t changed much in the past decade. All kinds of things - infection, pregnancy etc can cause the odd spike. Added to which you say you are otherwise healthy with no other issues. I believe all your other counts have come back OK.

Even if an MPN was confirmed, any intervention would most likely be ‘watch and wait’, or maybe daily aspirin. I didn’t start drug treatment until my platelets hit 1700.

I know it’s easier said than done but try to relax on this one. You’re under the care of a haematologist who seems to be on the case. And the good news so far is that all the tests have come back negative. And best of all, your platelet count is down again. Wishing you well. Keep us posted.

[Doggy1903]

Good morning, yes it sounds very confusing. The teams are excellent and will look after you. I agree, i think the steady nature of your platelets have not raised alarm bells.I am sure the team will follow you up, and as other lovely folks have suggested, please stay in contact . The forum is brilliant with lots of updates and information.Everyone is very supportive and will help with your concerns.

Stay well and enjoy all that you can. De stressing is a great place to start each day.Take time to check out how you feel emotionally and physically. some people keep a little diary of any symptoms or changes in mood to help form a picture of how the unknowing about a health issue can drastically affect any of us.

[hunter5582]

The three driver mutations for MPNs are JAKs, CALR, and MPL. All three should likely be checked at this point. As I understand it, JAK2 inconclusive might mean that there is some indication of the JAK2 mutation, but it is below the lab threshold for a positive reading. There could be other interpretations as well. Repeating the JAK2 does make sense given the inconclusive results.

You did not list your other lab results. There are a number of things that can cause secondary thrombocytosis. One example is iron-deficiency (which is not the same thing as anemia). You can be iron-deficient and have normal red blood cell counts - but elevated platelets. What did your doc say about the common cuases of secondary thrombocytosis?

[Winterella in reply to hunter5582]

He didn’t say anything about secondary but sent me to autoimmune blood tests and 2 more jak2 tests and said we’ll talk about everything in a month.

I told him about the lab threshold but he rubbed it off and said it means we don’t know yet. I read researches that did say jak2 can be reduced spontaneously but it’s rare. No idea what to expect!

[hunter5582 in reply to Winterella]

Not sure why secondary thrombocytosis is not being discussed. It would be a good thing for you to look into since it is possible. Likewise with the other gene mutation tests. Not sure where you live, but you may want to consult with a MPN expert. Many hematologists have very little experience with MPNs. Here is a link to a list mpnforum.com/list-hem./ .

Meanwhile, hope you are not worrying too much. Your levels are quite low so you would likely be a monitor-only (perhaps with low dose aspirin). I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. Most of the time, I have been on aspirin only. Still alive and kicking at age 64, just don't kick as hard as I used to.

All the best.

[hunter5582]

Note: JAK2 mutation comes in two types: JAK2 v617f (most common) and JAK2 exon 12 (less common).