Undiagnosed ET….advice please!

[Purdy13]

Hi everyone, I have my Haematologist telephone appointment tomorrow so just looking for a few opinions beforehand from you lovely lot…

A quick recap…. I am yet to be diagnosed as having ET. I have platelet counts mainly in the 500’s (lowest 364, highest 622 but that was with an infection). I have no symptoms and have tested negative for the three main drivers. My other bloods are all normal with the exception of Eosinophils which are always slightly raised. Iron normal but ferritin was low (currently on iron supplements). I have a history of allergies, irritable bowel syndrome and spondylosis. I’ve had an endoscopy and colonoscopy, both came back normal albeit minor GERD (acid reflux).

I understand that my current situation could now fit in within 3 categories…..

1. I could still have ET but as I’m triple negative this could only now be confirmed via a BMB.

2. If the BMB was to be normal I could potentially have a reactive cause that hasn’t yet been found / diagnosed, or my currently ailments of allergies, irritable bowel syndrome, spondylosis could be the said causes for reactive?

3. If the BMB was to be normal and no reactive causes found or current ailments believed to be the reactive causes then I would fit into the bracket of “this is just normal for me”.

So I have a few questions to ask you all although I will of course also be asking my Haematologist (I’m just keen to also hear your views)…..

With regards to reactive causes…. Although I’ve had lots of bloods done and an endoscopy, colonoscopy, I have not been sent for a scan on my spleen. I’ve also read that it may be wise to get checked for lungs, breast and ovaries…. Should this be a normal part of the investigation or is it only normal to be checked for these if bloods or other anomalies cause the suspicion to warrant further tests? I don’t know whether I should be pushing for these tests to be done or not?

With regards to no causes being found and in a case of “normal for you” where does that leave you if you still have higher than normal platelet counts? Would you still need to be on aspirin just for the fact that platelets are slightly high? Could you potentially be facing the same treatment (ie Hydroxy) as an ET patient even without ET purely through just having high platelets going forwards?

I am of course aware that I could still have ET and be a triple negative patient and am currently struggling with the decision on whether to have a BMB or not at this stage…

The way I’m looking at it is that I have no symptoms, my platelet counts are relatively low in the grand scheme of things and I am negative for the drivers. I believe I am currently “low risk”. If I have it done and do have ET I will be monitored only maybe with aspirin at this stage, and if I don’t have it done the outcome will be exactly the same, I will still just be monitored. So basically I am struggling to want to put myself through the procedure (as I do worry about the risks involved) with the outcome being the same?

Of course I do know that it would give me a definite answer which is the only positive I can see from it at the moment…..

 Your thoughts would be greatly appreciated as usual! Many thanks x

[hunter5582]

That is a very informed and well thought out assessment. The medical conditions you list could be a cause for reactive thrombocytosis. You may also be someone who just runs high-normal or slightly high because of your genetic profile. This is known to happen.

It sounds like the next step is to systematically rule out all of the potential causes of reactive thrombocytosis and/or a BMB. You may need to push for more extensive testing if you want a definitive answer. It would also be a good to get a second opinion before making any decisions. This is particularly important if you are not already seeing a MPN Specialist rather than a regular hematologist. mpnforum.com/list-hem./

Here are a couple of items you may find of interest.

onlinelibrary.wiley.com/doi...

emedicine.medscape.com/arti...

All the best.

[Purdy13 in reply to hunter5582]

Thanks so much Hunter. I think I’m going through what most people have gone through or are going through on here but sometimes your mind can get that full of all of the “what ifs” that it drives you mad and for me writing it all down and asking for advice helps me deal with it all…. You’re always very helpful and very positive so a great big THANK YOU X I’ll keep the group updated with my situation as it progresses…..

[CalL1981]

Your situation sounds somewhat similar to mine. I tested negative to the three driver mutations and also have a variety of autoimmune disease which could have reasonably explained inflammation and therefore elevated platelets. I did opt for the BMB and of course that is a choice that is different for each person. The BMB confirmed that I have an MPN.

[Purdy13 in reply to CalL1981]

Thank you so much for sharing. I take on board everyone’s experiences on here and it does all help me to understand more as I plod along with my own journey….x

[Hopetohelp]

When originally diagnosed I had a spleen scan and liver scan. Hope you get it sorted

[Aime]

hi, I have Polycythaemia without the vera as far as I know because I’m negative to the Jak 2 and Xeon genes. I do still wonder if there is another unknown waiting to be discovered which will put me in a category!

I’ve never had a BMB but I have been tempted to ask for one but was always told you don’t need one if you’re double negative. I guess it’s down to the individual, how you are feeling, what would put your mind at rest, etc.

If you feel a scan of your spleen would help, then that’s a non invasive procedure that you could easily have done. It is really down to what you want personally to answer your questions.

I’m going through a lot of other stuff just now, not related to my Polycythaemia but I think one day soon, will probably ask for more explanations re my bloods.

Hope this helps you.

Kindest regards Aime

[Purdy13 in reply to Aime]

I do hope you get answers too Aime, the anxiety and frustration is the main thing I suffer with regarding the whole thing…

I am happy at the mo to not push for anymore tests until my iron levels are corrected as that could be the whole reason for my high platelet counts. If it ends up where it’s not then I’ll have to make a decision about the BMB going forward.

Yes I read that virtually all Polycythema Vera patients are Jak2 positive so that bodes well for you being negative. It could quite possibly be something else secondary causing the high RBC and if they’re not worrying about it then you try and do the same… I’m a fine one to talk though, it’s taken me a whole year to begin to calm down about it all.

I wish you all the best! X