I just had my routine 4 month bloodwork and my platelets are normal at 399. They were also normal in March at 396. I haven’t had normal platelets in about 10 years or more. I have only been on aspirin. Was only just diagnosed by BMB with ET last July. Why would my platelet count all of a sudden be normal? I have not been sick.
My bone marrow biopsy showed myeloid to erythroid ratio was 20:1 with dysplastic hyperbolated megakaryocytes that favor mylodesplastic syndrome/myelofroliferative disorders. I was never explained what that meant. I just didn’t know if anyone needed this information also.
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Sharkdive1
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Ah ok that’s good then. Not really sure myself what could be causing it. I’m far more familiar with PV.
I wouldn’t think it’s anything to worry about but I would ask your Dr and they should be able to explain it. If anything I would think it’s just variance with normal day to day changes.
I hope so. It just seems strange after this many years of being high. I'm looking into finding an MPN specialist because my oncologist doesn’t really explain anything.
I don’t know but also we don’t have enough information to make even an informed guess. I would also want to know your WBC and any other new symptoms are. Assuming WBC and other blood markers are normal, I wouldn’t worry. Two samples four months apart does signal more of a trend than a transitory change, but there can other causes than related to MPN disease.
I’m going to assume you’re worried about transformation? The truth is no one here can tell you for 100% sure but if you have no other new symptoms, all other blood markers are normal, and your BMB was clean just a year ago I can’t imagine, nor have I ever read of a case yet, where that would be the case as there is always an additional abnormal markers.
I highly highly highly suggest, if you haven’t already, also get a NGS genetic test as that will tell you if you have additional risk factors. And 100% get with an MPN specialist or someone more familiar with MPNs.
Thank you and yes I’m worried about transformation. I know there was genetic testing that went out because on one of my papers it says please see the report from NeoGenomics. I’m also triple negative.
We need explanations and details!! Yes, get to an MPN specialist. As far as I know, the optimal is 150-200. In Austria, the max is 300 or 400 depending on the system being used. 400 usually means a small infection as far as I've been informed. Mine were usually 200-300 down in the spring. That was when I was taking Anagrelide. They were impossible to stabilize. On Besremi, the are soooo stable. They hardly budge. Yay!
The Dx suggested in the BMB is one or both of MPN and MDS. These are different conditions. Myelodysplastic syndrome is not typically associated with high PLT, in fact it can relate to low counts:
"In time, myelodysplastic syndromes might cause...low blood platelet count (thrombocytopenia)"
It's possible you're seeing the varying effects of each condition. Your Dr should provide more details relating to your specific findings. But you're right a general oncologist is not the best Dr for such specific questions.
Thank you for your help. I would like to know why it was overlooked that I could have both MPN and MDS. I didn’t question it because I didn’t know if I was reading my report correctly. I just questioned my myeloid to erythroid ratio of 20:1 because that is really high and I got no answer. I don’t even know what this ratio is pertaining to the disease.
I think there might be a misunderstanding here? If your diagnoses at time of BMB was ET then you have just ET.
The myeloid to erythroid ratio refers to whats in your bone marrow. A normal ratio is about 3-4:1. Depending on your type of MPN you will have different ratios.
Myeloid for simplicity sake refers to your capacity to make platelets. Erythroid refers to your capacity to make red blood cells.
My results told to me by my oncologist was MPN and the type being ET. I happened to see my BMB results said “myeloid to erythroid ratio 20:1 and dysplastic hypobolated megakaryocytes, favor MPN/MDS with uni lineage dysplasia”. I tried to ask her but she said I had an MPN called ET. This is why I’m confused about my platelet count the last 2 times.
Well from what I believe I understand of the BMB process the pathologist who read your marrow sample might not have had a clinical summary from your Dr so they just make their own educated guess what you have based on the bone marrow sample alone.
Your hematologist, while not an MPN specialist, is still better at giving you a diagnoses than just a bone marrow pathologist who doesn’t know your other information and is possibly seeing your sample in a bubble.
So I would trust your Dr until proven otherwise by an MPN specialist.
This report addresses MDS/MPN with respect to the very high ratio you found. This should lead to the BMB reporting Hypercellular. Hypercellular of one sort is common in PV but this seems to be a different type.
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"Myelodysplastic/myeloproliferative (MDS/MPN) neoplasms are a group of blood and bone marrow diseases. ACML is one of the conditions in this group."
"Hypercellular bone marrow:
Normally, the ratio of myeloid cells to erythroid precursor cells (M:E) in the bone marrow is around 1.2:1 to 5:1. In people with CML, this rises to an M:E ratio of 10:1 to 30:1. This increased production of cell lineages means that the bone marrow has an abnormal excess of cells, known as being hypercellular.
Although the bone marrow is also hypercellular in aCML, the M:E ratio is usually less than 10:1."
This is so confusing. It’s hard enough finding out you have a blood cancer, and now I don’t even know what I really have. I looked at my BMB and it said “myeloid to erythroid ratio 20:1 and dysplastic hypobolated megakaryocytes, favor MPN/MDS with uni lineage dysplasia”. I was just told I had an MPN called ET. The reason I’m questioning this all is because after 10 years of having high platelets, my last 2 results were in the normal range.
It is understandable that your results would be confusing. The best explanation would come from a MPN Specialist. Here are some links to find a MPN exper doc.
Agree on confusion, too much info too fast. I have a 2nd unrelated horrible condition that makes a complex mix with my MPN and my head.
You're right to want more explanation than your Dr gave. The MPN expert is your next step. I also think you're entitled to ask your current Dr for a more complete discussion as you learn more on your own. That M:E ratio and BMB findings are specific results that a qualified Dr should have discussed with you in context of the new PLT results.
For my MPN the BMB pointed to ET while my Dx was PV. It indicates the BMB is only one part of the picture. The MPN expert can put it in context best.
I usually try to have any new info with me when I visit the Dr, even if I end up not using them. You could have the reports linked here available when you visit the MPN expert. But some Drs are sensitive to pts with questions or efforts at knowledge, the better ones are more open to informed questions.
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For context on ET, this is the 2016 WHO criteria for BMB, from Table 1:
"BM biopsy showing proliferation mainly of the megakaryocyte lineage with increased numbers of enlarged, mature megakaryocytes with hyperlobulated nuclei. No significant left-shift of neutrophil granulopoiesis or erythropoiesis and very rarely minor (grade 1) increase in reticulin fibers"
I also have a second condition that make things worse too. Hypothyroidism. It’s hard to tell sometimes what symptoms are caused by which disease. They have a lot of the same ones. It like a double punch in the gut and head. I really thank you for all the information you are sharing with me. My doctor says she sees a few other PE patients. Then why does she not explain everything. Only you have an MPN that is ET and triple negative. I am definitely going to look into a specialist.
So why did your platelet count drop on its own? I have been on 1 aspirin low dose a day for 13 years for mutated Jak2 gene causing high platelet count. Average 1050 for 13 years. Nothing else is wrong. No enlarged spleen, no blood clots, no nothing. I am 68 years old. My doctor says platelets will not reduce unless I go own hydroxyurea. Why did your drop on its own? ThanksMindy
That’s what makes no sense to me. They have been high for about 10 years. I’ve been on aspirin since 2014 due to a pulmonary embolism in December of 2012. I have only been told to continue aspirin. So why would my platelets drop to normal range?
I think it’s best to avoid conjecture and head for an Mpn specialist with a list of questions. From my experience those unanswered worries can be agonising and are better followed up by a relevant clinician with specialist knowledge and experience.
Saying that, it’s not always straightforward to find that expertise when dealing with rarer conditions but I do hope you’ll get the answers and peace of mind soon.
I know it’s not a big decrease but I was just confused with how I can have a cancer that cause the production of excess platelets and it be normal. It also made me look into my bmb report and see the MPN/MDS and wonder if that’s why my platelets have never been very high.
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