I’m waiting on mutation tests results that hematologist ordered and don’t have a definitive diagnosis yet. Doctor is leaning toward ET. I have been having a lot of heart related issues like tachycardia (5 episodes of resting high heart rate over 110 reported by Apple Watch since May 4th), shortness of breath, fatigue, etc. Last night I had my first ever visual aura. I’m guessing migraine, but never had any pain from it. Just kind of a weird fuzzy feeling on right side temple area. The aura was a shimmering zig zag pattern around my peripheral vision. It lasted about 15 to 20 minutes and then slowly faded away. I was really tired afterwards.
My platelets have been elevated for over 3 years but just slightly and have recently just hovered under the 500 mark. I don’t think it’s normal for symptoms to be occurring at this level, but in my case they definitely are. I’m wondering if I should at least be taking low dose aspirin a few times a week? Any thoughts? I will definitely be calling my hematologist on Tuesday morning after the holiday.
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Shellbi
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I had visual auras with platelets hovering between 450 and 550 prior to my ET diagnosis. I started to get them more often when my platelets raised to 600s. Aspirin resolved the issue. You can try it, it should help but please consult with the doctor.
Just to say, you can definitely get symptoms with platelets at that level.
Prior to my ET diagnosis I experienced occasional scintillating scotoma attacks, which sounds exactly like what you’re describing. Likewise, I had occasional dizziness and tingling sensations. Yet, my platelets were only 500 at diagnosis. Funnily enough, I considered myself asymptomatic at diagnosis because I thought each separate symptom was age related. But now putting them all together they’re so typical of an MPN.
Significantly, since taking aspirin and hydrea the visual disturbance and dizziness have completely gone. I’m convinced it’s the aspirin that this can be attributed to. I still get the odd tingling/vibratory sensations.
Thank you all! Since I posted this 11 hours ago, I spent about 4 hours in the ER. I had tachycardia between 118 and 130 at rest all day. Then when my husband noticed my toes were purple/blue we decided it was probably best to go the ER. No heart attack, no clots. Labs good except platelets were high of course as were my WBC and absolute neutrophils. Those have been elevated off an on too of late. They released me after getting my heart rate down and told me to follow up with a cardiologist first thing Tuesday morning. I’m so exhausted!
I wrote you a lengthy answer, before I read this. I had many cardio appointments. Please ask to get everything done. In our situation it is good to have basis info for later on. EKG, stress test, heart variability test (really important and most don’t do it). I even had a CT. That’s an awful thing and if you have to do it, make sure you detox by taking a lot of selenium right after and for a few days to clean out your body from the radioactive contrast liquid.
I would also go to a vein doctor and check out your legs with ultra sound regarding circulation. It’s good to clear things and to know. 🙂
With multiple types of blood cells elevated, the doc will likely be considering a diagnosis of Polycythemia. There is some evidence that Leukocytosis + Thrombocytosis presents with a higher risk of thrombosis than with thrombocytosis alone. Would think they are already checking your JAK2 mutation status. if positive, you will also want to know what your mutant allele burden is (JAK2 Mutation Quantitative Analysis). Hope you get clarification soon. If you do get a positive finding for an MPN, it is important to know that some other conditions are MPN related and some are not. I have had two retinal tears (MPN unrelated) that required surgery. Still occasionally get flashers and floaters. This is an ophthalmologic issue - not MPN. Likewise, last year I developed paroxysmal atrial tachycardia. Had surgery for that too. This was an electrical malfunction in my heart. Again not MPN related. Unfortunately most docs do not have much knowledge about rare disorders like MPNs (even hematologists) - so finding a doc with strong MPN-KSAs is really important. Hope you get your answers soon.
I too have had issues with the visual auras. I used to have them 2-3 times a month before I was diagnosed. I am diagnosed with PV, but anyways after I started taking HU the auras went away. Mind you I had elevated platelets also, 1,200+. I wish ya the best of luck, and my drs down here said it had nothing to do with the PV. I told them they are idiots lol
my auras started, when my ET started nine years ago. My aura symptoms are exactly like yours. Rarely pain afterwards, but fatigue and a dumb brain. I’ve asked several doctors and they don’t believe that ET and aura migraines are related. I’m convinced they are. When I have one now, I immediately take a baby aspirin, lie down and close my eyes and enjoy the zig zags. I’m fine afterwards. That worked for me.
Heart palpitations. No one should be wearing an Apple Watch. Very bad for your health. You are constantly being zapped, especially on a pulse point. I have reduced EMFs as much as possible in my home and have rid my diet of all GMOs, pesticides, additives, plastics, all glutens and milk products and my health has turned around completely. I had similar fast heart rates, when I had panic attacks or took some med that didn’t agree with me. Nevertheless, check that out with a cardiologist. Play no guessing games, when it comes to heart.
You sound like you are very sensitive, which is good. You notice a lot and you can then do something about it. Doctors tend to dismiss patients like us as being nutty or difficult. They can’t “measure” what we are feeling yet and they often don’t know what it is, because other patients don’t mention our symptoms.
If I had been prescribed a baby aspirin at 500, I wouldn't have had low pressure glaucoma or deep vein insufficiency in my legs today or at least not yet. They both developed in the past 9 years. Both crept up on me. My doctor (a friend and Uni prof) didn’t take that seriously. Not even when I was at 750. She said an infection. At 823, I had my third TIA. The two light ones before that, were attributed to my slipped disc in my neck and anaemia and what not. On that day, I was brought to the emergency room and I was taken seriously. 3 weeks later, I was put on Anagrelid.
You are really lucky to catch this early on! Take really good care of yourself, love yourself and learn about yourself. Above all, enjoy every single little thing in your life that is a blessing and smile. Let us know how you are doing. The first few months after diagnosis may be emotionally taxing. We are all here for you and for one another! Cheers, Shellbi. Anag
I had symptoms of tiredness when my platelets were in the 500s also I had to come of clopidogrel for 10 days prior to an op. I was extremely light headed. Couldn’t leave the house. I thought it was because of no clopidogrel. I now know it was ET. I was diagnosed about 3 months later.
Please be sure doctors check for mast cell issues. The symptoms that sent you to ER are exactly what sent my daughter until, after years, mast cell was finally her diagnosis. I understand from what little research I have done that mast cell and myloprolific neoplasms can be related.
My first ocular migraine with no pain just no peripheral vision and zig zag black lines was the day before I experienced my first heart attack in Nov 2017 which then concluded viscous blood with platelets at 1million. A month later I was diagnosed with ET Jak2 positive. I have been on Hydroxyurea and aspirin for over 1 year and my platelets have come down to 300,000. I am 60 year old female. I would consult with dr before going on Aspirin.
Hello - my husband has ET and it is about him that I usually post here but .... I have had m migraine of the type yo describe for over 55 years - so consider myself an expert lol! The aura with the shimmering zig zag pattern around your peripheral vision is EXACTLY the description of aura migraine - some people have it with sickness and awful pain, others have no pain. It is awful, it is frightening ..... but it is migraine. And given the worry and stress you have been under recently it is no surprise that you have experienced this. Hopefully as you understand more about your general diagnosis and learn to live with it - this may not happen again. Best wishes xxx
Just reiterating what others have said but yes, the aura and the zigzags are migraine related and I have been told they definitely go hand in hand with ET. I was experiencing them for years before my ET diagnosis and then when I read up afterwards realised I'd been having them. From what I understand - you can have them regardless of whether your platelets are particularly high or not. They are symptom of the ET rather than of the high platelets if that makes sense? Something I have found works really well is to drink a big glass of water when they first come on - and stay hydrated every day, of course. I don't get them anywhere as near as I used to now which might be because I drink a lot more water or it might be the medication [I was on Aspirin, now on Clopidogrel].
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1st Heamotology appointment 
When is it time for a change?
A week to go till 1st August
Elevated platelets and feeling poorly all the time
