I'm 28yrs old and was diagnosed a year ago with ET. Platelets were around 470 when I was diagnosed and steadily increased to around 720 in February of this year.
However, my most recent blood results have shown the platelets drop to 636 and then again down to 520 about 2 weeks later. I am now also anemic so they have requested a follow-up blood test for B12, iron etc.
I'm concerned about progression ... I'm only on a daily aspirin so I was surprised to see my platelets have gone from increasing to now dropping again, as well as concerned about the anemia. The doctor didn't express concern but to be honest, I felt quite dismissed.
I'm young and so a progression to MF would be a huge worry for me in terms of life expectancy etc.
Has anyone progressed from ET to MF? What were your signs?
Thanks so much in advance,
Tasha.
Written by
RaspberryRen
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I won't say try not to worry because we all do! However, platelets counts can vary for all kinds of reasons - eg minor infections that we are barely aware of. My haematology nurse described platelets as "highly reactive."
Anaemia is extremely common amongst young women and it's possible that it has nothing to do with your MPN.
However, don't let your doctor be dismissive. If at all possible, get referred to an MPN specialist who will have much greater insight and be able to reassure you.
I was diagnosed with ET 30 years ago. It progressed to PV 8 years ago. Throughout this time, my platelets routinely cycled between 500s - 700s. When something was going on in my body, PLT could end up in the 900s. Do note that iron deficiency was one of the things that drove my PLT up (by about 200K). I also have Vit B/folate, Vit D, and magnesium deficiencies that are unrelated to the MPN.
There is nothing inherent in what you are reporting that indicates progression to MF. Though it is understandable why you are concerned. You do need to follow up on what is going on to sort it out. Hopefully you have a MPN Specialist on your care team (not just a regular hematologist). If not, here is s list. mpnforum.com/list-hem./
All the best and do please let us know what you learn.
Treatment for PV can involve therapeutic phlebotomy, which further depletes the iron available in the body. Iron Deficiency can have a number of adverse effects, including reactive thrombocytosis.
Understanding how this all works requires a basic understanding of iron metabolism. Here is a good video on this topic,
Hi Tasha, has your specialist already tested you for example, the JAK2v617f and CALr mutations? Progression to MF in such a short time is very unlikely.. Fluctuations are common in all MPNs.. Greetings Paul (JAK2v617 + ET since 1993)
hello RaspberryRen, it might help to speak to your haematology nurse specialist about these results and what they mean for you, so that she/he can explain it to you in more detail and give you the opportunity to ask more questions. Best wishes, Maz
Hi Tasha, as already indicated progression to MF seems very unlikely in such a short space of time this shouldtake years if at all. I do understand you are worried however I would suggest that you speak with your Haematologist with a view to having a BMB ie a Bone Marrow Biopsy. This is not the most comfortable procedure but it will give an indication as to progression or not and should set your mind at ease.
All the best I hope you get the answers you are looking for.
Thanks so much for taking the time to respond, and for the reassurance. Logically, I know that progression is unlikely, but as I'm still very new to the diagnosis, any obscure blood results can really send me spiralling.
I have a follow up blood test next to check for vitamins etc so hopefully will have some answers then.
In answer to some of your q's - I am under Claire Harrison's team at Guys St Thomas (not had any appts directly with Claire herself), and I am JAK2+.
FYI, I’m same MPN as you & also with the amazing Prof Harrison at Guys. They’re a great team & certainly, imo, into the detail of each patient. They are thorough in their analysis of bloods and in due course will do a BMB to establish a baseline in order to further monitor, if any, progression.
I decided a while ago to not worry about potential progression, confident in the knowledge that I’m being monitored by a fantastic specialist team who will let me know if anything changes & continue to treat effectively.
As Maz says , have a word with the team - they always respond with answers to any qs you have. It’s always good to get a bit of re assurance if you’re concerned because once you have that re assurance you can move on with confidence.
I was diagnosed with mylefibrosis at 24 iam now 37 my first signs was my spleen it grew really big it stuck out I looked pregnant my platelets dropped from 400 to 52 overnight I had severe anemia I was diagnosed due to blood clots and my liver failing I can’t really comment on progression as mine was straight mf but I want you know it’s highly unlikely you would so early in diagnosis maybe speak to your cns if your worried you are only using aspirin so they have options for you to try.try not to worry stress is a big factor in how you feel despite my diagnosis I have a good life I do understand your worries though I think it’s the same for us all good luck I hope you find answers soon
Quick update for anyone that was interested - my follow-up bloods showed that I was no longer anemic and my platelets jumped up a little to 656. I really need to get used to these minor fluctuations without spiraling into anxiety every time!
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