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ET: untreated elevated platelets for over 13 years
So I shared a bit on here not too long ago about being misdiagnosed with type 1 von Willebrand‘s disease in my early teens, and then more recently found out that I was misdiagnosed 13 years ago. I’m now 29. Since the VWD diagnosis, my platelet count was ALWAYS elevated, and rising over the years. At the time I found out that I did not have any clotting disorder whatsoever, my platelets were 670k. I was only at that appointment because I had a TON of new symptoms flooding my body that all seemed random and to make no sense, and those were all struck down as fibromyalgia and anxiety… when I shifted the conversation to focus on my platelet count, the oncologist could not give me an answer as to why my platelets were elevated so high for so long, nor could he recommend a medication to at least keep them “within range.” Which, by the way, would have been the first time in at least 12 years. He denied a bone marrow biopsy because I’m allergic to lidocaine and he said that he was uncomfortable with doing any kind of procedure like that with my allergies/hypersensitivities (that all came about basically after the 10 year mark of sustained platelets) and that he “didn’t believe it would be worth it.”
About four years ago, my body started to show signs of other things going on that my oncologist at the time thought were completely unrelated to hematology/oncology and sent me to a rheumatologist. And it went how you’d expect — blamed it on something else and didn’t want to see me again. Which is fine, since I know they have to be coming from the ET.
Now that I’ve been in a constant state of sustained thrombocytosis for well over 12 years now, and not a single piece of blood work ever showing that I’ve been “in range,” I wanna know if this rings true for others with ET (and more specifically if you’re out there — triple negative ET).
Please tell me about your experiences.
How many of you are in your double digit years, and what were some things that you noticed that changed in terms of symptoms and disease progression?
And how many of you had it undiagnosed or missed for years on end and what symptoms did you experience because of your sustained platelet levels? And that going untreated?
Listing all of mine would take up all of the brain power I have for a week, but the most recent and debilitating ones for me:
- erythromelalgia in hands
- shortness of breath that I thought was asthma flaring back up, but this is just constant now
- an increase in the chronic pain
- cognitive impairments that make it seem like I spent an entire day using my brain to solve science, even though I simply woke up for the day
- and extreme fatigue that I have never felt before in my life. I was diagnosed with chronic fatigue syndrome when I was 18 or 19. But over the last two years at the least, I have been getting so fatigued just existing
I see a different oncologist in two weeks and I want to be as prepared for presenting her with an argument that this isn’t normal and not sounding like a hypochondriac. Any advice would be so very much appreciated.
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Hola, buen día. Te cuento que yo soy Cal-r positivo. Pero los síntomas son similares en todos nosotros asiq te puedo dar mi experiencia.
En cuanto me diagnosticaron {12 años atrás} empecé a tomar hidroxiurea. En ese momento no tenía demasiados síntomas más que algo de cansancio. Con el tiempo los síntomas aumentaron, hoy tengo varios síntomas como fatiga extrema (hay días mejores que otros), niebla mental y dificultad para respirar entre otros. Pero estos son los más comunes, principalmente la fatiga está presente en casi todos nosotros.
Hoy tengo 43 años.
Saludos y suerte en tu consulta.
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6 ReactionsFeliz cumpleaños, vivoconte!
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1 ReactionErthromelalgia, yes
Worsening of asthma, yes
Mental fog, yes
Fatigue (not sleepiness), yes
The asthma/shortness of breath/worsening allergies may be be from increased histamines. ET and related diseases cause excess histamine production. However, I'm 71, and those things do worsen with age also.
You may have an advantage with your new oncologist because you are younger; your symptoms can't be blamed on menopause or age like mine were for 6 years.
I am glad you are seeing a different oncologist. Maybe a good strategy is to have hard copies of your your blood tests as far back as you have them in chronological order so they can see the platelets trending up.
Basically, if docs can't see it, hear it, or feel it, it doesn't exist. Plus, hemos don't see many ET patients, especially not ones under 50, and their textbooks often say that ET is symptomless.
Once they've seen the hard evidence and they seem concerned, hit them with the symptoms.
Let us know how it goes. We're pulling for you!
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10 Reactionslexsjk, I am so sorry for what you have been through.
ET is so rare that our doctors make fools of themselves trying to figure us out.
And being triple-negative makes it even more challenging to get a diagnosis.
Every symptom you're experiencing could be from ET. Shame on whoever "diagnosed" you with anxiety!
While I'm not triple-negative, I too had a delayed diagnosis, as my ignorant PCP had never heard of ET. But once I finally had a diagnosis from an oncologist, HU set me right.
I hope your oncologist has knowledge of MPNs, so that he or she will understand that yes, you can have triple-negative ET. (Ten to fifteen percent of people with ET are TN.) Then treatment options can be discussed.
Many of us take daily aspirin to help our blood flow. Many of us also take HU to reduce platelet over-production. A daily antihistamine can help with breathing and itching.
But we are all different! What works for me might not be good for you.
Hopes high that the new oncologist will know what's best for YOU.
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6 ReactionsWow. I am glad you will have a new doctor. I think you were done wrong. I am ET triple negative. Diagnosed in 2025 but had slightly elevated platelets for about 10 years. My GPs spotted the problem. First sent to a hematologist in 2016. I think he mentioned ET but about all I remember is his saying don’t worry it’s not cancer. He said to just monitor my platelets and to come back if things changed. It took almost 10 years for my platelets to start to increase more rapidly. My new GP spotted the issue and recommended seeing a hematologist again. This guy diagnosed me. Did through workup including bone marrow and NGS. Did I have symptoms 10 years ago? Probably, but I had some trouble seeing them for anything other than aging. Even before my diagnosis it I just thought I was aging very rapidly. I had a host of symptoms I can now attribute to the disease: blurry vision, dry eyes, mouth, mucous membranes in general, hair loss, muscle cramps, dizziness, shortness of breath, tingling of feet, ankles, hands, joint and body pain, cognitive issues galore. I an now on HU for a year and most symptoms have improved. I added a number of medical specialists to my team to treat symptoms. For example sample I have a rheumatologist, a eye doctor who specializes in dry eye, a cardiologist, and gastroenterologist. I feel more equipped to meet this disease head on and get the most out of life. Insist on the NGS and bone marrow testing. It will help you understand your disease better. Also see an MPN specialist if you can.
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8 ReactionsFirst of all, you may want to consider a hematologist/oncologist for help with this. I'm a bit older than you (71) and had gradually increasing elevated platelets for at least 10 years before being diagnosed with ET. My main symptom when the numbers got higher (400 or so) was an increasing number of migraine headaches. I hit menopause at age 53 and at that point got a migraine about once a year. Starting in June, 2022, I noticed more frequent migraines and eventually they occurred anywhere from every couple of days to once a month. After a bout of food poisoning that never resolved, my PCP ordered blood tests to see if anything else was going on, noticed my high platelets and referred me to a hematologist/oncologist. He immediately suspected ET and the diagnosis was confirmed via bone marrow biopsy on 11/1/2023. I started Hydroxyurea short thereafter and never had another migraine. And, my platelets dropped from 792 to 168 as of my last blood test two weeks ago and I continue on HU along with a low-dose aspirin daily.
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10 Reactions@debhammel Migraines are awful! I did not have as many as you, but they came with blinding auras that always seemed to hit when I was teaching, and trying to see the board or a kid who raised a hand was just about impossible. Like you, the HU cleared those up, thank heavens! If I eat the really good dark chocolate, that will sometimes set one off, too.
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5 Reactions@nohrt4me It is interesting that our medical practitioners are seemingly unaware of the possible link between high platelet counts and migraines. I know my PCP has a new raised awareness as a result of my experience and she is now way more sensitive to checking platelets when her patients complain of migraine.
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6 Reactions@debhammel whether the new provider was a hematologist/oncologist was the first thing that I checked! I also let them know that I was seen by one of their PA’s a couple of years ago and didn’t return because I had a bad experience. They spoke with the provider who focuses on hematology patients specifically and she wanted to see me herself and evaluate me at this upcoming appointment. I also brought up whether or not she is experienced in correctly diagnosing MPN’s, ET, and triple neg ET, and they assured me that she was. And I definitely checked into her credentials myself lol. So yay, I’m glad those were the right thing to do!
And that is so crazy because chronic migraines are actually one of the very first symptoms that I got that made no sense whatsoever. They came out of nowhere and I saw a neurologist who told me to read “The Body Keeps the Score” because they wanted to use stress or anxiety and depression as the reason. I’ve had them since 2019, just a few a year, but then I had a “silent migraine” in 2021 and my ocular migraines got worse while “regular” non-aura migraines started to come on more frequently and I got caught in a rebound-migraine cycle for almost a year. They would last for 15-20 days straight and I just powered through until I couldn’t anymore. I tried EVERY migraine medication on the market to help with the pain, but I did not respond to any of them well, nor did they make my migraines go away. I currently still get migraines, and take Nurtec every other day to help prevent them, but it does not stop them whatsoever. The Nurtec does help with the pain sometimes because of this type of migraine medication, but other times it will not touch my migraines at all. And during this time, I believe my platelets were at their lowest 520k and up to 600k during the start of the all of this. I've unfortunately never seen a single blood test since my teenage years showing my platelets below 475k.
Thank you so much for this! I’m definitely going to bring this up
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6 Reactions@nohrt4me did you take any other medications to treat the migraines before starting HU? Had any seemed to make a difference? I ask because I tried every single one of them on the market with no success and no answers as to why. I also included a ton more information in my reply to @debhammel ’s original comment. Please, feel free to share anything that resonates with your experience 🫶🏻