what to think?

[Labbymom]

I posted recently that I’m 51 and platelets have consistently been slightly elevated for 5 years. They were consistently 400-450 until last month they were 500 at annual checkup and then 469 a week later when I saw the hematologist. My WBC is often a little high as well, recently 11 (I often wonder if that’s a stress/panic reaction because I am terrified for all of this and before and at appts) Red counts are normal to high normal with hematocrit just over normal recently.

5 years ago I had extensive lab work done and was negative for all the mutations. 3.5 years ago I had a BMB which was normal. My iron was low 5 years ago (although not anemic obviously) but it was never mentioned to me and on test I just had it was normal - ferritin 25. I was frankly hoping it would be low and that would be the reason for all of this.

Saw new hematologist (one I saw formerly in same practice had long wait). Young but seems attentive and well trained (in major metro area). He’s basically like “don’t worry, come back in 3 months, seems reactive and benign.”

But…reactive to what? I have no symptoms. My cholesterol is high and I just started a statin. Is that the kind of inflammation that could cause a platelet elevation? I have a lot of anxiety about health and this has been hellish for me. I’ve read any literature I can find about whether stress, excess belly fat (need to lose 20) , cholesterol can cause the kind of “inflammation” that can cause high platelets but can’t find solid answers from credible sources or journals. The Dr said no when I asked about stress causing the high platelets.

I’m exercising like crazy and have already lost 10 lbs, eating an anti inflammatory diet, meditating etc. but my anxiety is so high it may counteract any of those things.

My biggest worry is that it’s not an MPN even but some occult cancer. Dr really discounted that as a possibility (and it’s been 5 years since this began). I had colonoscopy, pelvic u/s and mammo about 10 months ago.

I just don’t know what to think and I’m having a hard time waiting for three months…I reached out to another hematologist for a 2nd opinion but they are booked until fall. I called Hopkins, but you need a referral to go there.

[hunter5582]

I think you can afford to reduce the worry level. With platelets being only borderline high and at age 51, even if you have a triple-negative ET, all you would do is take an aspirin (maybe) and monitor.

There is some evidence that stress can increase inflammation and PLT levels, but it is not a clear thing. The bottom line is that stress does wreak havoc on the body. Managing stress is essential to good health.

It seems very unlikely that you would have some kind of occult cancer given that you have been evaluated comprehensively. It may be that you are just someone whose PLTs tend to run on the high side and takes very little to tip over the top of the reference range.

It sounds like you have a good plan in place. Continue to exercise and maintain a healthy weight. You could adopt an anti-inflammatory diet as well. Many of us use the Mediterranean Diet. Continue to monitor and carry on with living a good life.

Note that I have had a MPN for over 30 years. It was ET but progressed to PV. I have lived good life and continue to do so despite some additional health challenges of late. I am now 67 years old and plan to keep living a good life.

All the best,

[Labbymom in reply to hunter5582]

hunter, thank you, you seem very knowledgable on this board. In terms of triple negative ET, how likely is that with the normal BMB 3.5 years ago?

I was initially more concerned about PV because all 3 cell lines have been elevated in some way at different points but it seems like PB w/o mutations is quite unlikely (I also was negative for Jak 12 exon (may be getting that name wrong) and a few other things I think).

[hunter5582 in reply to Labbymom]

They would most likely have also checked for CALR and MPL. That would be the other two driver mutations. JAK2v617f, or more rarely JAK2 Exon 12, is the third type of the three driver mutations. Given your normal bone marrow morphology, a triple negative MPN (ET/PV) seems unlikely.

There are more sensitive tests that look at a wider array of potential mutations. You could discuss with your hematologist whether a NGS study would be indicated in your situation. I rather suspect that this test would also be negative, but it might ease your mind to do it.

It is easier to say "don't worry" than it is to do it. We have all been there at some point. Suggest the best thing to do is to focus on stress management while you figure out what is going on. This is a lesson I learned the hard way. In the last several years I have had four surgeries, including heart (arrythmia) and brain (tumor) surgery, In the same time frame, I found out that the ET had progressed to PV, but I had been previously misdiagnosed. It have certainly been some interesting health learning opportunities.

Please know that you have this. you will figure out what is going on and how to best manage it.

[Labbymom in reply to hunter5582]

yes, CALR was checked 5 years ago, and MPL just now when bloodwork was done, both negative

[Lappool]

Stress definitely increases your WBC.

[KLCTJC]

have they ruled out all secondary causes? Like sleep apnea, smoking, etc? Stress can absolutely affect your numbers but so can other things. It will be ok. Like Hunter said, we have all been there and are all on our own crazy ride! But it will be ok. And the people on this site are so helpful. We will help where we can. I 100% get it! I am anxious all the time and I never know anymore if something is normal or related to my diseases! Yoga, exercise, family and prayer (and occasional glass of wine) have helped me cope the last 2-3 years with PV then finding out I have MS. Will pray for you, but it will be ok😊

[Labbymom]

I don’t smoke or drink. Apnea is a possibility - I snore - but I didn’t think there’s a correlation with platelets, I’ve read there could be one with red counts.

otherwise, hematologist doesn’t seem to really be looking for a reactive cause and there doesn’t seem to be a clue. He checked CRP (it was 6) and ESR (I think 17) so both in normal range, although CRP might indicate some mild inflammation (range is up to 10).

As I said, I was hoping this all might be iron related because I’m 51 and cycles have been heavier in recent years (ultrasound showed some mild adenomyosis) and iron 5 years ago was low, but this time ferritin was 25 which isn’t terribly high but is in normal range.

[Whitehair51]

You might want to try some counseling to ease your anxiety.

[Tropicaldays]

Sounds like you are very similar to me. Just keep monitoring. If all your other tests are -ve then should give you some confidence. You may just be someone who is on the 'high side'.

[Lappool in reply to Tropicaldays]

agree on that. Almost everyone in my family would meet the WHO diagnosis for PV with the HGB & HCT levels but we do live at high altitude