Hi @lexsjx

I’m 63 and just started hydrea (HU) 2 weeks ago. I’ve had elevated platelets for at least 20 years but they were low level elevated, like in the 400+ to lower 600’s. I guess I was on what they call active watch. At that point my response was harumph, my platelets have always been high and shrugged it off - not understanding implications that they might climb at some point and the condition become more serious.

Just about a year ago my platelets started rising more into the 700-800’s. So I saw a hematologist who knew about ET. I’ve now been through the blood tests for gene abnormality, two bone marrow biopsies (the first was not done correctly so was a dud). And my platelets reached 982

Over the past year I have experienced increasing symptoms that I didn’t understand - reduced hearing and loud ringing in my ears, bad headaches, increased fatigue and sometimes tingling in my feet and hands. I’ve had my blood checked twice since starting HU and the first week the platelets dropped 120k. This week the level was steady. But I am optimistic that I will see a reduction in the symptoms as I continue to take the hydrea.

I am considered triple-negative since no gene mutations were evident, even a very rare 4th mutation (JAK2 Xeon, or something like that). Now my Dr suggested a full genomic panel but I am waiting to have my insurance approve the test.

One hematologist I told me that MD’s worry when platelet counts reach 1,000 (really 1M) and to not wait until then to decide next move. Elsewhere I’ve read that at 1,500 is really concerning (red alert) for potential blood clots.

My current Hematologist really reiterated to me that my case is very rare (ET triple negative) so it is not something that all Dr’s understand being a rare thing. And not all Dr’s know what to do; refer you to a hematologist or preferably a MPN specialist.

One primary care Dr continually asked if I’ve ever had a stroke or a heart attack over several visits. Each time I said a shocked and adamant NO yo his question to which he responded “well if you feel any light-light-headedness or pain in my chest be sure to call 911.” His “solution” freaked me out to the point I did call 911 once and also caused me to ask for a referral to a hematologist. Obviously that primary care Dr. was not aware of ET or how to treat it.

At the suggestion of my brother, a hospitalist doctor, I asked for a referral to a hematologist. My brother humbly said that he is not a hematologist and does not have their specialist knowledge, like what triple-negative means.

I share all of this to conclude with a few lessons I’ve learned.
1. Find a Dr who understands ET and its variations
2. Understand it is a rare disorder so not all Dr’s know about it or understand (#1 stated differently)
3. If you aren’t getting your questions answered to your satisfaction find another Dr who can do that
4. Educate yourself on the condition
5. Get questions ready for your visit like:
-What is the next step to get to the bottom of this problem?
-Is a bone marrow biopsy or gene test appropriate?
-Should I start taking an aspirin a day to thin my blood?
-what are the risks that there is a leukemia lurking or mylofibrosis in my bones? (This is the rationale my specialist MD gave me for performing a bone marrow biopsy?)

I hope this helps you.

Best of luck with your appointment!

Meg