I am very confused.

[LKVVZ]

I hope someone can provide me with some insight here because I think I’m going mad.

I was diagnosed with ET 13 yrs ago however going back on old reports it showed that my platelets were high since I was very young (I am now 38) I am jak2 negative and never had a biopsy.

I also have thalassemia MINOR with a depleted red cell count and chronic anemia and iron.

Everything I read tells me that your platelets naturally rise when you are anemic or have low iron. Does this mean that I possibly could not have ET and maybe have reactive platelets instead? If so, is it possible to have ongoing reactive platelets that never go into the normal ranges?

I am on aspirin alone. My platelets range from 600 to 700.

I hope someone out there can help.

Lina

[jane13]

I am puzzled that u think high platelets and low iron go together - the opposite is my experience and I am not sure that there is any causal link

[LKVVZ in reply to jane13]

I was told by my specialist that the lower your iron count the higher your platelets will rise. There are also several medical articles online that state the same thing. Basically your platelets react to anemia

[LKVVZ in reply to jane13]

verywellhealth.com/things-t...

[Mazcd Partner MPNVoice]

Hi Lina, you really do need to discuss this with your doctor. Maz

[maryz66]

Hi Lina are you under the care of a haematologist? It seems sad that you were diagnosed 13 years ago and yet you are unsure of what is really going on with you. Go to your GP and seek a specialist opinion.

[clubdino]

Hi. You are correct. Low iron can cause high platelets. I've had ET for 15 years at least. My platelets have stayed in the same range for the entire 15 years. But a year ago I became iron deficient and my platelets elevated even more. We treated my iron deficiency and my platelets returned to their normal high level. How did they diagnose you with ET if they didn't do a BMB and you were jak2 negative? I had a BMB early in my disease and it came out inconclusive so I stopped searching for an answer. More than a decade later my PCP noticed my platelets were high and sent me to a new hematologist. He clearly said that iron deficiency could be causing my platelets to be at 522k. It turns out in the meantime the CALR mutation was discovered since my last BMB and I did test positive for it.

I would see a hematologist and ask to be tested for the other mutations.

[LKVVZ in reply to clubdino]

Finally someone that understands me! Thank you for your reply.

I actually have thalassemia minor which means I am chronically anemic (not much can be done) and also find myself iron deficient a lot. Constantly needing tablets to bring up my iron. Which is why I’m thinking that maybe I don’t even have ET maybe I’ve had reactive platelets all my life because of my thalassemia?

I was diagnosed only through a blood test. My heamatoligist won’t give me a BMB because he doesn’t feel like I need one (not sure what that means) and yes I tested jak2 negative.

Right now my irons sits at 14 which is low and my platelets are 710 - the highest they have ever been. But I was suffering infection at the time (UTI) so I am hoping that the reason they spiked is only because of infection and nothing else!

[clubdino in reply to LKVVZ]

I completely understand. I went undiagnosed for so long so I know what it feels like to be unsure. The test for the other two mutations (CALR and MPL) is just a blood test so your doctor doesnt have much of a reason to deny that. I think your hematologist is saying a BMB isn't necessary because it wouldn't change your treatment plan but they might not understand your need to know.

[Tico in reply to LKVVZ]

Hi LKVVZ, completely agree with cludino that haemotologist refusing to do a bmb because it will not change your treatment but i suggest you have another talk with him/her about the need to know one way or the other. Failing that you could always ask for a referral to see another haemotologist. Atb,tina.🤗

[CalrType1 in reply to clubdino]

Hello clubdino. Stable ET with Calr for 15 years, type 1 or type 2? Hydrea prescribed?

[clubdino in reply to CalrType1]

I dont know which type I have. No medication except baby aspirin. I know it's fairly unusual to not have any progression in the platelet numbers over 15 years but I seem to be an anomaly.

[LKVVZ in reply to clubdino]

Well that’s the same with me except mine have been the same for way over 15 yrs! Which is why I’m rethinking my diagnosis all together.

[CalrType1 in reply to clubdino]

Nice to be stable. Thanks for the reply.

[ChelseaF]

Hi Lina! I’m still with you in the undiagnosed boat. It could definitely be anemia causing reactive thrombocytosis. My hematologist gave me an iron infusion just to rule out iron as a cause once and for all. I was not anemic but my iron saturation was borderline. It was definitely not the cause for me. My iron saturation came up but my counts were not changed at all. I don’t know anything about thalassemia so I don’t know if it would be possible to do an iron infusion but if it is I would talk to your hematologist about it. It would be nice if you could rule ET out.

[LKVVZ in reply to ChelseaF]

Hi Chelsea thanks for writing back to me! My iron has been okay in the past with still an elevated platelet count, however because I also have thalassemia minor it could be playing a part because thalassemia means I am chronically anemic no matter how much iron I take. My red blood cells are always on the low side - currently my hemaglobin is sitting at 94.

Did you have a BMB to rule out ET also?

[ChelseaF in reply to LKVVZ]

I did have the biopsy which could not confirm ET. But it also doesn’t rule it out so the doctors still think it’s what I have. It’s annoying and I have no idea what to think. I keep hoping a secondary, treatable cause will pop up and my count will drop but enough time has passed that I think I have to get used to the not knowing.

[LKVVZ in reply to ChelseaF]

Are u perhaps chronically anemic?

[ChelseaF in reply to LKVVZ]

No. I have never been anemic as far as I know.

[BloodZero]

I think it is possible. But like the others have said, discuss with your specialist. Print out the articles you have read and give them to him/her if necessary.