Introducing myself...

[jenster68]

I've been lurking a while and I'd like to say hi to you all! My name is Jenny, aged 49, from Essex, UK. I've had elevated platelets (around 670) for a year. My haematologist is not quite sure what to do with me! He suspects ET. So far I have tested negative for JAK2 V617F, CALR, MPL and BCR-ABL1. Not entirely sure what all of those mean or if that is good or bad! I'm taking low dose aspirin and have a BMB booked for 3 July. I'd be grateful for any advice please on what questions I should be asking or what further tests might be useful. Thanks!

[JediReject]

Hi Jenny , , Welcome to our Forum. Hopefully your BMB will determine your diagnosis. I would say that the absence of certain gene mutations is a good thing. And also a good thing that your platelets aren't way out of control. In my view all this puts you in a low risk category and all you may need for now is regular blood count monitoring. As for questions I'm not sure until you know exactly what you have. Assuming ET I would want to know the best way to manage it with least possibility of medication side effects. Hopefully you will remain stable and the aspirin will suffice.

Good Luck - Chris

[jenster68 in reply to JediReject]

Thanks, Chris. That all sounds pretty reassuring. Fingers crossed for the BMB!

[mhos61]

Hi Jenny and welcome to the forum.

Because you have tested triple negative for the MPN mutations a BMB will give your haematologist a better picture of what’s happening.

Also, the World Health Organisation now recommend a BMB as a major criteria in their updated criteria (2016) for ET. This is to differentiate between ET and Pre-Myleofibrosis. So, it sounds like you have a good haematologist.

If you get a diagnosis of ET you could ask what your thrombotic risk is. Being Jak2+ or MPL puts you at higher risk. As you don’t have any of the mutations it would be interesting to know.

Good Luck

Mary x

[jenster68]

Great advice, Mary - thank you! It would be good to have a clear picture of the thrombotic risk so will definitely ask about that

Jenny

[ChelseaF]

It sounds like he is doing the right things. I would make sure you have checked common causes for reactive thrombocytosis, like iron deficiency if you haven’t already.

I have had high platelets now for 12 years at least. My biopsy could not conclusively confirm ET but I have been poked and prodded looking for secondary causes with many different specialists so my hematologist is working under the assumption that I have ET because we can’t think of anything else to look for.

I hope you get more definitive answers than I have but without a known secondary cause treatment is the same regardless. Good luck on your journey!

[jenster68 in reply to ChelseaF]

Hi Chelsea and thanks for your reply. A bit like you have spent the last year trying to identify secondary causes.

We have looked at iron deficiency - my haemoglobin was 123 at its lowest - so not strictly anaemic - but my ferritin level or iron stores was very low at 8. I've got four children and had very heavy periods so we thought that might be related to low ferritin/high platelets. I had an endometrial ablation last year to reduce my blood loss from periods and I have been taking iron supplements. Last counts were 139 for haemoglobin and ferritin increased to 28 so both in normal range, although the ferritin iron stores still seems pretty low to me (normal range is 11 to 307 apparently).

The only other condition I have (and have had for over 20 years) is guttate psoriasis. I'm not sure if there is any link and in any case the high platelets only occurred a year ago.

Hoping that the BM biopsy will shed some light on what's going on. Luckily I'm pretty symptom free. The aspirin seems to have stopped the tingling toes and fingers. Frankly, it's all a bit of a mystery!

[cwayman11]

Hi..try get to see professor Harrison at Guys. X

[katiewalsh]

Hi & welcome. As you’ve already seen, people on this forum and both knowledgeable & helpful. Equally important is that we’re ALWAYS here if you need a shoulder to lean on or a place to express fear, frustration or whatever. I’m glad you’ve popped up from the shadows so we can get to know you. Do you prefer to be called Jen or Jenny? Katie Walsh (I’m live in the U.S.).

[Mazcd Partner MPNVoice]

Hi Jen, welcome to our forum. This might help you with putting together some questions for your haematologist

mpnvoice.org.uk/living-with...

don't be afraid to ask anything about your ET etc, it's always a good idea to write down any questions you have so that you keep on track with what you want to know. Hope all goes well for you, kind regards, Maz