First post. Joined to club recently with a Jak2 / ET diagnosis. Took an elective men's health blood panel almost a year ago which identified platelets at 528. In September '22 I tested at 576, and in November '22, tested at 645. Had a bone marrow biopsy this fall and the diagnosis.
I'm on a wait and see approach, with taking a baby aspirin daily. Focusing on staying well hydrated, exercising, and healthy diet.
Curious - do the platelet counts naturally fluctuate substantially over time (as in up and down, not just up)?
Has anyone seen their platelet counts drop with non Rx measures? If so, what by what means ?
Thanks!
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Carini
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Platelets can fluctuate quite a lot daily. Its the overall trend that matters.I tried natural approach for 2 years . Many different suppliments * with support from professionals )
When platelets reached 1000 I decided risk was to great. I do still take Cbd oil , turkey tail mushrooms powder, fish oil ,vit b and c and d. Along with 500 mg of hydroxicarbamide every other day.
As Mostew says, PLT can vary considerably for many reasons. But if yours is continuing upward that is consistent with your ET Dx from the BMB. Unfortunately there seems to be no way to address high PLT other than "real" medicine. If there is we'd all like to know about it.
The choice for you and Dr will be when/whether to start such meds.
Like others have already said - platelets can cycle and fluctuations of 100 up or down are not uncommon..however the trend is what is important - I was on watch and wait and aspirin for 6 years as platelets went from 500's to 900's (more or less on a steady upward trend with some fluctuations) - also made sure to eat low inflammatory/healthy diet; lots of water and lots of exercise with some natural anti-inflammatory supplements OK'd by my GP/doctor at the time) - all to no avail. When platelets spiked to 1,400 my MPN specialist and I decided it was time to be more aggressive and started on cytoreduction.
In my particular case my MPN specialist was fine with me not wanting to start on medication up to 1,000 with no other symptoms -the spike and some bleeding at the gums pushed us forward. The good news is there are now options if medicine is the way to go.
I have had big fluctuations with my platelets even within 1 hour which showed a difference of around 300+. This happened on two separate occasions. The hospital did 2 tests, first a finger prick ( for a quick test) then venous blood. I have also read it depends how hydrated you are too. It doesn’t seem a particularly accurate test to me.
Interesting, so it was random with no pattern how it was taken. I had from two different labs at my Dx time and they were not that different. Yours are way different at the same place.
I queried it with the haematologist and he had no explanation, and more worryingly no desire to look into this discrepancy further. But 300 + is a huge difference, and could result in different treatment options. Needless to say I lost all faith in that doctor. I haven’t seen him since.
I tried a really strict almost vegan diet & it made no difference whatsoever. The Peg Interferon is working but a roller coaster to get doseage to suit . We all different. My platelets now at 320 so just aspirin till January & guess they will have risen by then. I am sporting lots of excercise & water but still cannot control the rise without medication unfortunately that’s ET 👍
Thanks Exter21 for your feedback. Glad you get your levels down and the meds are working. Interestingly - my oncologist told me to focus on healthy diet but that a vegan diet would not be a good idea with ET. I forgot her exact reasoning. Of course with diet there is always plenty of competing ideas on what is actually healthy.
The food issue is all about the inflammation & bone aches . Additives & fast foods etc no good . I ate everything before but sticking to healthy food & low carbohydrate certainly improves the aches I now don’t have. 👍
Yes, but the question is what is a low inflammation diet? The classic low inflammation diet says no/low red meat and low fat. The bullet proof diet claims to be a low inflammation diet and is high fat (good fats) and red meat (only grass fed). There does seem to be evidence that grass fed beef is low inflammation and grain fed beef if high inflammation. Point being - aiming to 'eat healthy' is a hazy target that seems to be always changing with differing views. Of course, there's obvious elements like processed food, seed oils, fried foods, refined sugars.. that are clearly good to avoid/eliminate.
I read up loads on it & stick to Mediterranean diet plus fish chicken dropped red meat. Lots grains on cereal yoghurt. No fast foods . I can only speak from experience of changing diet that my aches went & loads of energy. Platelets slowed on rising when on no medication . I was healthy eater before but this has been better energy. I just have to conquer side effects of migraines I got on interferon when I start it again in January .👍
Thank you all for your comments and feedback. My Dr. says once I hit 1,000 I'll go on the meds, but it sounds like there is some variance there - and some don't go on until 1,500. Hopefully I'll have a ways to go until needing to address this. But, as they say, we'll see!
It's not ideal to go on meds.. but I am grateful that they are available and that they work.
Welcome! I'm ET Jak2 positive and was diagnosed 1 year ago, though I've had this for at least 10 years. During those 10 years, I saw my platelets go from slightly elevated in the 400's to a more consistent 720-900 the past few years. During this time, I didn't make any changes in my life for the MPN and ignored it/didn't follow up about elevated CBC's.
Recently, I've seen my platelet count drop to 600, and I do believe that it's not simply random but potentially impacted by significant diet and lifestyle changes I have made. I need to see how things play out over time as I continue these changes and have more CBC's.
I currently do not take any meds and am technically on "watch and wait" as well. Honestly, I think this is an awful way to do and view things from doctors. While a lot of that comes from lack of research/value into diet/lifestyle changes and MPN's, there is research into inflammation and its negative impact on so many areas of MPN's (symptoms, progression, even platelet count [will explain below], etc.). Inflammation can be controlled/worked on through diet and lifestyle, and this is what I've been doing. I am calling this approach "proactive observation".
98% of what I eat is anti-inflammatory. I eat fresh/frozen vegetables and fruit, nuts/seeds, lots of herbs/spices, whole grains like quinoa, legumes, frozen/fresh/canned fish high in Omega-3's, and once in awhile other meats. I cut processed foods (no more frozen pizzas, alternative meats [if you're vegetarian], cold cuts, any packaged pre-made foods). I do consume some minimally processed foods, such as canned beans or pasta (once in a while). I cut dairy and sugar (you still get sugar from fruit/potatoes/etc.). My sweet treat is now 85% dark chocolate. I've cut most baked goods. Essentially, I focus on eating "real food" and reading food labels! It's crazy what's added to a lot of foods that you wouldn't even think about, such as in many peanut butters.
I've increased my weekly exercise - and exercise that gets my heart pumping. Exercise is a proven powerful anti-inflammatory.
I've worked on decreasing stress, which is very inflammatory. I've started meditation, which is a proven anti-inflammatory and it helps lower cortisol (stress). I've reprioritized things in my life, and health/anti-inflammation has become #1. I've talked to my MPN specialist about whether stress can increase symptoms AND platelet count, and he said YES. I asked my doctor about this because I've noticed that if I'm very stressed, I bruise so easily. I've also noticed when I'm not stressed, I don't bruise the same.
Since making these changes, I've felt the best physically and mentally than I ever have. I led a pretty healthy lifestyle before diagnosis, but even these changes have been very impactful for me.
My goal is to treat my MPN with this type of approach. I think consistency in making these changes could be key. I'm a younger patient, so I have a long road ahead. We'll see what happens, but so far I've found it encouraging.
Yes Lucy I did same as you a read up on anti inflammatory & that diet has worked amazingly for me . Lots of energy & no bone pain . Prior to changing my body took ages to get moving from aches 👍
Et diagnosed 11-21 started hu in aug22 platelets fluctuate tried many natural meds turmeric garlic ginger green tea vit d zinc and more prior to going on hu was hesitant due to covid but cant say I really notice a big difference since I started platelets came in line finally on q 500mg /day after 60+ days will do blood again in dec and see oncologist but yea the fluctuate both or with out meds
My two cents: Eating right and exercising generally makes anyone feel better, which probably means it is even more important for those of us with an MPN (or any other underlying health condition). Having said that, I am skeptical that diet and exercise have a significant impact on disease progression.
I have always eaten well (okay, let's not talk about my 20's) - I eat lots of fruits, vegetable, almost zero processed foods. And run, walk and play tennis regularly. I have been even more diligent in my diet over the last couple of years. Platelets keep going up (and in fact had my biggest jump in my most recent appointment...though perhaps better then a big decrease, which often means progression to another MPN). I have personally seen no evidence, nor read any evidence that diet/exercise impact platelet counts (though I do think this helps symptoms and how I feel).
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