ET: untreated elevated platelets for over 13 years

@nohrt4me ugh yeah I’ve definitely been dealing with my fair share of allergies and random allergic reactions and hypersensitivities that sent me to the ER and put me on steroid packs over and over again. In 2022 I think I was put on a steroid pack for severe allergic reactions at least 10 times, and experienced such extreme reactions in front of general doctors who recommended I go to the ER once a month, with a few months going twice. But no ENT or allergist could really point to anything specific causing the full body hives and rashes and then the systemic symptoms that came shortly after. I also have really bad acid reflux, so I have been on famotidine for these symptoms, which I know is also helpful with excess histamine. But I’ve also just recently been put on pantoprazole on top of the famotidine because of the severity of the acid reflux. So I will definitely bring this up as a talking point.

Apart from the obvious blood work, are there any other blood tests that you’ve had done or found helpful to bring up with your provider due to a potential link between those abnormal results alongside elevated platelets?
know every time I’ve gone to the emergency room for intense abdominal pain or allergic reactions they would always check my D-dimer levels, and they have never been below 600. Usually over 1000, and the last time that they tested it was over 1500. But they didn’t explain anything about it apart from “see rheumatology”

@lexsjx I took Sumatriptan and was never convinced that it did anything more than take the edge off the headache. What helped more was if I could take a nap.

@janemc thank you so much. It’s such an isolating disease and not really encouraging when neither friends or family nor the medical system believe what you’re telling them. I was first tested for ET in 2022, but then my hematologist retired and the PA I was assigned to did not listen to me or even look at me during the appointment. She even put notes in my chart saying “probably a rheumatology/Derm issue so refer her there for now” and told me to take iron for the fatigue, even though I wasn’t deficient.

I’ve also even been told by an oncologist that “it won’t be ET if you’re under 900k and your 670k isn’t even close to that.” It also makes so many people think that you're a hypochondriac or you’re simply lying about having cancer when the doctors don’t want to take your concerns seriously and leave you untreated in your 20’s but continue to ask for bloodwork every 6 weeks as if that dynamic is “normal.” No one really talks about the stress that comes with the constant rigorous testing alongside the endless loop of waiting for answers for years on end, while your quality of life is diminishing.

Thank you so much. I’m hoping this one will finally be the one that moves forward, even just an inch, in the right direction

@eloise999 wow… I used to run a pharmacy before my symptoms and constant specialist appointments became too frequent that my health became my full time job. But when I was working, I was the youngest lead technician, but there was a running joke that while I wasn’t even 24, I was essentially 40. because of just how many symptoms and diagnosed conditions I had. Which then already included arthritis, nerve pain, and sciatica, among all of the others.

I also absolutely have all of the symptoms that you mentioned, and almost all of them either came about or got worse over the last 5-ish years. And, ironically, all of those same exact specialists. I also have SVT and mitral valve prolapse that was diagnosed two years before my platelets first showed out of range and I saw my first hematologist.

I also struggle with chronic muscle spasms that sometimes are so severe the muscle will get stuck, neck pain, nerve pain, joint pain in my knees and hands and my hips.

Before you started seeing the correct providers for and had a diagnosis, had you previously taken collagen peptides? For your connective tissues/Joint pain?

I know for a fact that I need a bone marrow biopsy and I definitely plan on insisting that my new oncologist do one as soon as possible. Especially if 90% of the symptoms that I’m having can be nearly eradicated with HU.

@lexsjx I have not tried collagen supplements. Do you think they help? MPN patients often have individualized symptoms and reactions to medications. It can be hard to sort out the best treatment. For example, many patients have fatigue, but I don’t suffer from that. You are young so you may want to consider interferons as a treatment. They are more expensive than hydroxyurea, and have different side effects, and they work differently in the body. There is research that showed a reduction in the amount of JAK 2 mutant stem cells with interferon treatment. Also some CAL R mutated patients reported reductions in their driver mutation too. It is always hard to say whether the same effect might be obtained by a triple negative patient since we do not have those mutations, but you never know.

Re migraines: Once the aura was gone, the headache was bearable, though lying down in a dark room was helpful. For me, the aura was the worst, blinding and made me very anxious. A headache was just pain, and I can work thru that. I didn't have enough of them to ask for meds.

I do get blurred vision occasionally. My dad had ET, and he had that also. "Visual disturbances" are ET symptoms.

@lexsjx I have a complete CBC every three months to monitor. Guessing that's what the doc will focus on.

If you had the JAK2, CALR, MPL tests for driver mutation and they were neg, the doc would want to see those. Also results of an ultrasound if spleen if you have had one of those.

If you have any other "off" blood values, good to have those.

Now that I take hydroxyurea, they do a blood chemistry panel (CO2, glucose, calcium, sodium, etc.) and test EFGR and LDH, which monitor liver/kidney health. If you have had those tests recently, the doc might be interested in those results as a baseline.

well it doesn't just occur with ET ..PV JAK2 mutation another myloproliferative neoplasm is very often missed.. I notice my red cells slowly increasing over time. Every office visit I would bring it up my doctor said dehydration every single time..then i'm sitting in the kitchen and my right eye went black for a full minute and it took a full minute to recede..I knew it was most certainly a TIA so I went to the Emergency Room. They started the stroke protocol you name the test I got it. everything came back normal. I had every doctor involved say the same thing. when I returned home I looked at my lab work all the red cells were now way over normal. I said that's it i'm going to a hematologist. when he walked in the room clearly studied mt chart said you have PV he checked for the mutation it was positive...I'm 77 year old female having had it for who knows how long ..i've been with hydrox and asa for three years.Most of us die from a clot to the heart or brain..he believes because these myloptoliferative neoplasm are very rare most doctors have never heard of them, they go undiagnosed and patients have their heart attach or stoke never knowing they had one of these treatable diseases. Sad but true...

I just this past week got diagnosed with ET.
I, like you am VERY frustrated. I’ll give you a little history on me. I’m 59. I’ve had migraines for 33 years, a 20 year out bariatric patient, my platelets have been high since 2017 (that’s as far back as I can see on my portal) and 6 years ago I found out I had the Jak2 mutation. At that time I went to a Hemotology/oncology doctor who looked me in the eye and said “why are you here? Your Jak2 is only at 2%”. I started sobbing. I was so scared going in there and I honestly think he never even looked at my platelets. It was a crappy experience. Fast forward to about 2 years ago. I started taking IV vitamin infusions as it was determined that I was nutrient deficient from my bariatric surgery. I was always tired and fatigued. I tried supplements but my body would not absorb them. The infusions helped but then the person doing the infusions became my friend as well and started studying over my bloodwork. I told her I’d been having these “Spells” where I thought I was fine and the next thing you know I was dizzy, light headed, would break out in a drenching sweat, get shakey and weak and then I was absolutely done for the day. I always tried to eat when these happened. She said like it was hypoglycemia (again from the bariatric surgery) so I wore monitors. Nope my sugar was fine, blood pressure was fine. She also noticed that my iron was very very low and had been for years. My ferritin was down to 5 so ordered iron infusions to which my platelets for one month were actually in the normal range but have now gone above normal again.
Thru the course of all these years I’ve been a model patient. Did all my bariatric appts, followed the rules, then with supplements, ect, NO ONE looked at the big picture for me. No one looked at all my stuff. Now I’m reading the migraines, extreme fatigue, weakness, iron deficiency, ect can all be related to this. I want to cry. I take daily migraine meds and I am only on a baby aspirin a day at this point. I’m super gunshy of the chemo pills as I know they have side effects too. I have a pretty big family history of blood cancers on both my mom and my dad’s side. (A grandma on one side and all three aunts on the other) and yet no one saw this? It was me pushing and advocating for myself with the help of my amazing IV gal that we are finally getting some answers altho the new Hemotology/oncology doctor is saying he does not think these spells I’m having are related. Has anyone else with ET experienced these kind of things??? I’m just sad and scared and frustrated.

@sdcgcarroll

What a long and difficult road you're on, sdcgcarroll.

My two cents: AFTER hydroxyurea (HU) or some other treatment lowers your platelet count, and you STILL are having those episodes -- THEN the oncologist can declare them unrelated.

Right now, such a comment is baseless. Dizziness, hot flashes and debilitating fatigue can all be symptoms of ET.

As for aversion to HU: That's perfectly natural. Who wants to go on chemo?

Please delve into this forum to learn about others' experience. So many people (including me) have gotten their lives back thanks to HU.

You've been fighting for yourself for years. Keep up the good work!