Is it et?: What's everyone's thoughts I know your... - MPN Voice

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Is it et?

Irishgal12
Irishgal12

What's everyone's thoughts I know your not doctors and I havent had investigation done yet but what are peoples experiences? My platelets 574

Crp normal. All other routine bloods normal. Iron stores not competed

Am 32 female no symptoms

Over the years platelets fluctuate my norm seems 450 454

Am I likely heading for et?

24 Replies
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You may have ET. I've had it since my late 20s and my platelets haven't gone over 550k in 16 years with no treatment. But there are many things that can cause high platelets with iron deficiency being a huge one. So they have to rule that out first for sure.

Irishgal12
Irishgal12 in reply to clubdino

Am hoping its iron deficiency my intake of red meat is limited but my hb was ok but ferritan etc not been done am so scared because et is cancer if diagnosed I wont cope I will worry forever

clubdino
clubdino in reply to Irishgal12

You can have iron deficiency with no anemia. I became iron deficient a few years ago and my platelets went up an extra 100k but as soon as my iron deficiency was treated my platelets retreated to their "normal high" level. Try not to worry yet. And even if it is ET you can live a normal life span with it.

Irishgal12
Irishgal12 in reply to clubdino

Thank u me too have u got et

clubdino
clubdino in reply to Irishgal12

Yes...for about 16 years and I'm still not on meds for it. 😊

Irishgal12
Irishgal12 in reply to clubdino

That's good. I suppose if I get diagnosed I think I'd worry constant

you could have ET, When I was diagnosed my platelets were over 900, I had classic symptoms and did not know it. Nose bleeds, itchy hands, tiredness , nodding off at a drop of a hat, to name a few.

My platelets have dropped to around 300 from 2 years ago and I haven’t recently had any of the symptoms above.

Be patient, as the previous writers have said, eliminate all other possibilities, your bloods will be monitored over quite a few months to determine the route cause of the high platelets. Don’t let it get you down, be positive and there are many people who will help and understand.

Thank you so there is a chance it may not be et

Your platelets are just above normal, a little exercise with healthy eating. Look at the foods that naturally reduce platelets along with those that could increase them.

Also wanted ask do you get financial help with et

That is tough one as it depends on the extent of your condition, your current employment and support. My current employer gives me time off for hospital appointments, let’s me work from home, if I need to, I have risk assessment carried out on a one to one basis. They currently pay me if I’m not well. They have also allowed me to leave early and attend evening seminars. I’m probably lucky.

Not that I want money would rather not have it just incase am too I'll to work

Platelet levels above 450 is by definition thrombocytosis. Whether it is primary (essential) or secondary is what needs to be determined. The docs will likely start by checking for some of the common mutations (JAK2, MPL, CALR) as well as following your CBCs over time. If there is a primary condition causing the thrombocytosis, then that condition will be treated. If the thrombocytosis is essential (Essential Thrombocythemia) then you will enter into care for a MPN. Since you did not mention red blood cells (erythrocytes) and while blood cells (leukocytes) I am assuming those were normal. If other cell-lines are elevated, then other conditions, like Polycythemia Vera, would be evaluated for.

The good news is that your platelet levels are relatively low. In the absence of cooccurring medical conditions or MPN-related symptoms like thrombosis or hemorrhage, your risks are fairly low.

FYII was diagnosed with ET at about your age. That was over 30 years ago. My ET progressed to PV about 6 years ago. Still alive and kicking! There can be some challenges along the way, but even if you have ET or another MPN you can lead a long rich life.

All the best to you.

Thank u been told other cbc normal

Does that mean bone marrow biopsy

That depends an what diagnostic protocol your doc is following. Some do it - others do not. The diagnosis of ET does not require a BMB.

You’ve had lots of sound replies. Try and enjoy Christmas. The response you’ve had indicates that there are a lot of us going strong.

Keep us posted with even the most tribal of questions. Someone will respond. Merry Christmas

Xxxxxx

Irishgal12
Irishgal12 in reply to Wyebird

Thank you. You will be fed up of me asking questions I hope it's a reactive causes

Wyebird
Wyebird in reply to Irishgal12

No one in this site will ever be fed up with your questions. Even if you think they are silly someone might be glad you’ve posted them. I have primary Et ( Calr) xx

Irishgal12
Irishgal12 in reply to Wyebird

Sorry to hear what were your symptoms platelets before diagnosis what is your treatment now

Wyebird
Wyebird in reply to Irishgal12

Wow it was 4 yrs ago I was diagnosed. I just felt jaded. Thought it was because of son’s wedding etc. Then thought due to minor op

and age I was taking ages to recover was anaemic. Then fainted went to a n e blood count Took iron medication because it showed anaemia . And e told me to go to go because platelets were over 500. A and e said no way should they be that high because I’d had a stroke 10 yrs earlier ( not related) go sent me to heamo blood test showed I had mutated gene Calr. At time of diagnosis platelets 800. Low compared to some people but I felt awful. Only Last 6 months have showed plateau of platelets. Yippee ! Felt better after diagnosis and 3 weeks of meds

Irishgal12
Irishgal12 in reply to Wyebird

Which meds do u take

Wyebird
Wyebird in reply to Irishgal12

Simvastatin. Clopidogrel ( for stroke but also needed for ET.)

9 anagrelide and 17 hydroxi a week.

Irishgal12
Irishgal12 in reply to Wyebird

And u feel ok

Wyebird
Wyebird in reply to Irishgal12

Bril compared to the last 12 months. Quite anaemic though.

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