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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Thanks for the information about the electrolyte powder! Sounds like it’s really working for you. Good thing a new doctor entered your life and found the root of your health issues with the platelets and white blood cells! Don’t be a stranger here. We all benefit from sharing our experiences. ☺️
Hi Lori
It's called sustain. A powder I mix with water. I read high platlets can cause dehydration so that's when I started and it helped. My platlets, white cells and potassium levels have been high for last ten years. My doc said it was because I smoked. After collapsing 3 times and a new doctor and bone marrow biopsy they got it figured out. I did lose some vision in one eye that glasses can't correct but can live with that. Thank you Lori for inquiring.
In the past 3 months I’ve had a sore throat / bad cold twice, each lasting 2+ weeks. Fully vaxxed/boostered.
I figure ET lowers immunity so I wear a mask as much as possible.
Welcome to Connect, @marty8888. Thank you for sharing your experiences with having ET. It’s really encouraging to hear you’ve had such good results with taking HU and that your foot and ankle pain is gone! Equally interesting is the change you’ve had with adding electrolytes on a regular basis.
Was this something you found on your own or did you have blood work done that indicated some of your numbers were low? What type of electrolytes do you take?
Hi Victoria
I had ankle and foot pain before my diagnosis. Once on hydroxyurea the pain went away. I also drink electrolytes that have helped me alot. Use to get migraine 2 a week before electrolytes.
Welcome to Mayo Connect, @rachelpabs. With your history of essential thrombocythemia, it’s important to have regular blood draws to monitor your condition. If you haven’t checked in with your physician lately, it would be a good time to have some labs run. It’s not usual to have the flu for 5 weeks. Have you gone to see a doctor for your lingering symptoms?
I was diagnosed 17 years ago at the age off 22. I have had a flu now for 5 weeks and just cannot shake it. I am quite worried about what the future holds. I am usually ok but very tired. Approaching the third decade is daunting. Is anyone else in this position?
Good morning, @julieanna57, it’s been a couple of months since your first posting about having a very high platelet level. How are you feeling? Have you gotten any more information from your hematologist?
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.