update last blood count: platelets went down... - MPN Voice

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update last blood count

Winterella
Winterella

platelets went down further naturally from 446 to 423 - truly baffled and mine blown because with that number i don't fit an mpn criteria.

waiting for two more jak2 results after 2 came back inconclusive :(.

am starting to think i'm one of those non-mpn with low jak2 burdens that science can't explain... :(

28 Replies
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That is one possible theory. You might have one of those MPNs - Not-Otherwise-Specified that just does not fit neatly into a category. You could also have another undetected primary condition and what you are experiencing is secondary thombocytosis.

Alternatively, you may be just right on the edge of a MPN due to barely detectable JAK2 (or other) mutation. The JAK2 mutation is a clonal disorder. Hematapoeitic stem cells with the JAK2 mutation have a clonal advantage, they tend to multiply more effectively than the wild-type (normal) cell. That is why JAK2 mutant allele burden can increase over time. (Note: this is very complicated and I only have a KISS understanding myself.) It might be that you caught this really early and the JAK2 mutation is just not entrenched enough to reliably detect. That could explain why you float around the edges of the normal level. NOTE: Platelet levels can vary by as much as 100K in just a few days. This is normal.

There is more than one factor that affects platelet levels at any given time. My levels fluctuate from 468 - 990 depending on what is going on (e.g. surgery, illness), but almost always cycle between low 500s-mid 700s for no apparent reason. After 30+ years with a MPN, my JAK2 mutant allele burden = 25%. I started with ET, but it progressed to PV about 7 years ago. This all ties together with the JAK2 mutation and how it works and evolves in our bodies.

I sure hope you get a more definitive answer as soon as possible. Not knowing can be worse than finding out for sure you have a MPN. Perhaps the best way to look at this is that you will have LOTS of time to figure this out and for now - you can go about life until you do know. Please do stay in touch and let us know what you discover on this journey. Your learning can benefit us all.

All the best.

I have borderline normal high platelets for more than 10 years!

How did jak2 didn’t increase then? I haven’t found one! Research with a non progressive jak2 for so long since my plt went down twice in a row now. That’s why i’m baffled.

For some the JAK2 burden stays stable for long periods of time. I certainly do not understand this myself, but I do not know that anyone does. This is still an emerging area of research. It may well be that you are just one of those folks who does not fit neatly into any one category. You may just hover on the edge of a detectable MPN for a long time.

I think the important thing is to focus on the symptoms - not the lab numbers. The MPN Specialist was very clear that "sanitizing" blood cell numbers has little value in and of itself. He focuses on the symptoms that affect the patient's life - thrombosis, hemorrhage, fatigue, inflammation-related issues, etc. Treatment is to minimize risks and improve quality of life. If the only thing that is going on is lab values that flutter up above norm occasionally, the doc would likely recommend a monitor-only protocol.

I do not remember if I ever sent you this link, but it is a great presentation by Dr. Spivak, my now retired MPN-Expert consultant. It includes some good information about ET and the JAK2 mutation. Warning: he is a bit pithy about some issues, but amuses the heck out of me whenever I hear him talk. He really is quite brilliant, but not all agree with his views.


Your situation is perplexing. can sure understand how frustrating it can be trying to get an answer. Keep on hanging in there. All the best to you.

I'm CALR positive ET for 16 years. My platelets have gone into normal range twice on their own which was confusing to me. I do not take any medications. I've always been only borderline high...never going over 550k in 16 years. But anyway, I guess I'm proof that even when you have a MPN you can temporarily go into normal range.

Winterella
Winterella
in reply to clubdino

I have borderline normal high platelets for more than 10 years!

clubdino
clubdino
in reply to Winterella

I guess that's a good thing, right? That we really don't seem to be progressing like other people. Although I still get the symptoms of the MPN like fatigue and pain. I think my last platelet count was only 433k. Hell, if I wouldn't have become iron deficient a few years ago and had a temporary rise of my platelets then I still wouldn't have been diagnosed with a MPN to this day.

Winterella
Winterella
in reply to clubdino

But i’m scared. If we don’t fit an mpn and don’t progress for some bizarre reason which science can’t explain (and that i can’t find one article that explains why or even one example of people like us - all clinical experiments on google scholar only talk about people who progress after a few years). Then are we at risk for a blood clot? Should we be treated or not?

clubdino
clubdino
in reply to Winterella

Well I officially tested positive so I definitely have a MPN. I would say almost no doctor in this world would recommend treatment at our numbers unless you have previously had a clotting episode. I have seen a couple other people like us who have not progressed in many years but it is rare. MPNs don't always follow the rules. For instance, people who are CALR positive generally have really high platelet counts but as you can see my MPN doesn't follow that rule. I have read before that having a MPN technically makes you more susceptible to clots no matter what your number is because our cells function differently but I'm not sure all doctors would agree with that. Has your doctor recommended aspirin?

Winterella
Winterella
in reply to clubdino

He is still investigating the cause..

Sent me for clotting disorders blood tests like mtfhr leiden factor and so on, they took more than 20 vials yesterday at the lab... so the jury is out there for me... he sent me 4 times for a jak2 test, isn’t that funny (or sad)? Lol. Still waiting for results... doesn’t wanna give me anything at the moment , i even asked :/

clubdino
clubdino
in reply to Winterella

I do know how frustrating it is to not be diagnosed. There was somebody on here recently that posted about being jak2 positive but having completely normal bloodwork. I think their spleen was enlarged and that's how they found out. I would guess that their blood will eventually show changes indicating a MPN. It sounds like you have a good doctor who is really trying to get an answer for you. Has your doctor tested you for the CALR and MPL mutations? Sometimes people are positive for 2 mutations at once. Maybe you would get your answer that way.

Winterella
Winterella
in reply to clubdino

Ultrasound said my spleen was normal.

Nope he is still trying to figure out the jak2 thing first :|

Yep, that was me (or possibly someone else in the same situation). My bone marrow shows some mild signs of MPN but not enough to diagnose it. My JAK2 level was 4% and a couple of days ago I did a myelod-NGS-panel test, which will take some time to analyse.

I don’t know what my jak2 level is just that it’s inconclusive - twice.

Means they found something low leveled. My dr. Doesn’t want me to go through a bone marrow biopsy yet. Never heard of myelod ngs panel test what does it detect?

I think it detects additional mutations that can point the doctor in the right direction, but I don’t know which ones yet.

For how long have u been with borderline platelets for? Did they guve u any pill?

I’ve been at 414 once (a couple of months ago), that’s the highest and I think I was dehydrated. I’ve only been instructed not to start smoking and to stay hydrated. My dad has PV though.

So why did u decide to get tested? Was anything else out of the order?

Recurring gastritis from stress -> doctor insisted on doing an abdominal ultrasound and apparently my spleen was mildly enlarged. I was referred to the hematology team at the university hospital which ordered more tests, including jak2. With a positive jak2, spleen and a one time platelet count above the limit (in Sweden), they did a marrow biopsy. No symptoms whatsoever yet. Follow up with the NGS analysis in august and probably another biopsy within a year or so.

I have gastro burning sometimes as well but normal spleen and inconclusive jak2. :|

If you ever remember this post, don't forget to update, i will too! I hope we both find answers...

I will!

My platelet count has gone into normal range which I found quite alarming wondering why but doctors aren’t concerned so I guess I shouldn’t be. Diagnosis of MF was more from looking at marrow though so maybe have that redone if you want to know where you are with progression. I’ve been thinking about requesting it as it’s been over 5 years since my last. I don’t know how often they’re done routinely.

MF has other signs (unlike mpns) such as: enlarged spleen, high hemoglobin, anemia, etc. did u have any of those?

No I didn’t but the scarring of my marrow was pretty clear apparently. I have lots of other antibodies so am quite complicated. Just seen your pm so will reply.

DJW1
DJW1
in reply to Winterella

MF has low hemoglobin, not high.

Winterella
Winterella
in reply to DJW1

Correct that was me being tired hehe

Why no bone marrow biopsy?

My guess is he wants to spare me the pain as long as he is not sure yet what i have and if it’s mpn related. Waiting first for blood tests to get an idea.

A variation of 20 pts is not statistically significant - over the last 2 years mine has gone up and down over 100 pts, and the specialists are not concerned.

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