Essential Thrombocythemia (ET) and viruses
I was diagnosed with Essential Thrombocythemia a few months ago, and I’m positive for JAK 2. So far, I have a “mild” case (platelets are below 600) and currently taking only 2 low-dose aspirin a day. Since my diagnosis I’ve gotten 2 colds/viruses. The first one turned into pneumonia, and I’ve never had pneumonia in my life; I’m currently sick with another cold or virus and on day 6. I feel like it’s getting progressively worse each day instead of better. Is this because of the ET? Is this how every little illness is going to be from now on?
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Hi @julieanna57 As @eileen11108 mentioned in her reply to you, your platelet count of 1.2 million is quite elevated and even at 500,000 it is significantly higher than the normal high for a female which can be 150,000 to 300,00 or 330,000 depending on age.
It sounds as though you had a bone marrow biopsy which ruled out leukemia. That had to be a huge sigh of relief. But having platelets that elevated can mean you have an increased risk for blood clots. I’m sure that’s why your doctor has you on aspirin. But that isn’t reducing the amount of platelets or addressing the condition.
It would really be in your best interest to seek another opinion from a hematologist; a blood specialist. That’s what I would be doing if I were in the same situation.
Is the doctor you’re seeing a hematologist?
I never heard no hormones. My Hematologist said HRT was fine. Just no progesterone. I, too, have ET. I was recently diagnosed at nearly 70 years old. My platelets have come down significantly from over 600 to 450 with taking 1 aspirin daily and HU 3 days a week. I don't have any side effects from the HU or symptoms from ET. The only thing that I do notice is painful tingling and redness in both feet. Good luck to all.
Hi Julieanna57,
I am curious whether you are taking anything other than aspirin. Your platelets seem very high.
I am 78 and have Essential Thrombocytosis and treated with Hydroxyurea which is causing daily headaches, some migraines, I will discuss change of medication when I next see the hematologist,
Best wishes, Eileen
I just have them when my iron points get too . I think it was just twice last year but maybe 2 to 3 times a year the past 9 years. thanks Again.
Basically, all of your symptoms of anemia and the ET may related. You’re not getting the benefit of full, healthy blood cells. So the fact that your hematologist is doing routine checks on your anemia is two-fold. It also keeps track of your Essential Thrombocythemia. It is a type of blood cancer but it’s not generally aggressive and takes time to develop over years. And at this point in time, blood thinners would be the treatment anyway so you’re covered.
The main concern is to prevent blood clots. So the blood thinner is very important to keep taking. Try to avoid sitting for long periods of time in one place…move around to keep your circulation up. Hydration is important too.
I found a pretty good article from Blood-Cancer.com which explains ET. https://blood-cancer.com/clinical/essential-thrombocythemia
Try not to let the word Cancer form your thought pattern now. Nothing has changed as you’ve most likely had this for several years. ☺️ Just keep living like you have and then have a chat with the NP at your next appt.
It’s really great that you can go in to get iron infusions when you feel you need them. How frequently do you get them?
Thank you so much. My next appointment is March 13. They have been giving me a choice of 6 weeks or 3 months and tell me to call if I need to come in sooner. I choice 3 months but after reading my chart I wished I had an earlier appointment. I have had many iron infusions. So when I start feeling real tired I call for a sooner appointment. I had the TIA in 2014 and I have had chrons since 1990. I just thought they were keeping check on my anemia. Is Essential thrombocythemia a blood cancer? When I looked it up that is what it said. I definitely will talk with my PA. Thanks Again!!
Hi @bettyk49 I see you’re new to our forum and I’m happy you found us. You recently discovered that you have essential thrombcythemia. With your history of a TIA, the blood thinners you’re already on play an active role in treating ET since having too many platelets can cause abnormal blood clotting. So the blood thinner is taking the place of the aspirin.
It’s good that you’re seeing an oncologist/oncologist. That is a blood specialist. I’m surprised he/she didn’t talk over your diagnosis with you. I think at your next appointment with your hematolgist or their Nurse Practitioner, you should discuss what you’ve found on your My Chart so there is some clairification for you.
You were wondering if hemorrhagic thromboyctyemia is worse than essential thromboyctyhemia. They are one in the same. Essential thromboycythemia was formerly know as Hemorrhagic thrombocythemia.
When is your next appointment?
I heard Claritin works for the itching.
Hi Artie 4
Have you had the covid Vaccines?
according to the nhlbi.nih.gov website: Thrombocythemia refers to a high platelet count that is not caused by another health condition. This condition is sometimes called primary or essential thrombocythemia. Thrombocytosis refers to a high platelet count caused by another disease or condition.