1. < Blood Cancers & Disorders

Essential Thrombocythemia (ET) and viruses

Posted by arti4 @arti4, Oct 8, 2022

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?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Mentor
Lori, Volunteer Mentor | @loribmt | Dec 13, 2023
In reply to @marty8888 "Hi Lori It's called sustain. A powder I mix with water. I read high platlets can..." + (show)
@marty8888

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.

Jump to this post

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. ☺️

REPLY
marty8888 | @marty8888 | Dec 13, 2023
In reply to @loribmt "Welcome to Connect, @marty8888. Thank you for sharing your experiences with having ET. It’s really encouraging..." + (show)
@loribmt

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?

Jump to this post

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.

REPLY
1 reply
janetbender | @janetbender | Dec 13, 2023
In reply to @rachelpabs "I was diagnosed 17 years ago at the age off 22. I have had a flu..." + (show)
@rachelpabs

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?

Jump to this post

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.

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Dec 12, 2023
In reply to @marty8888 "Hi Victoria I had ankle and foot pain before my diagnosis. Once on hydroxyurea the pain..." + (show)
@marty8888

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.

Jump to this post

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?

REPLY
1 reply
marty8888 | @marty8888 | Dec 12, 2023
In reply to @wiggins32 "Hi Victoria. My heart skipped a beat when I read your post, specifically about the "bone..." + (show)
@wiggins32

Hi Victoria. My heart skipped a beat when I read your post, specifically about the "bone pain in shin". In 2022, joint pain went into overdrive. But in past 2 months, both shin bones are very painful even at night when trying to sleep. I haven't done anything different so no explanation there. I've told my Internist a few times. She ordered bone density = normal. I have severe iron deficiency anemia and get infusions every 3 months or so (unknown cause). I also have shortness of breath, but that's usually from IDA when my iron has crashed. The bone pain is worrisome! I'm used to joint pain with osteoarthritis but never bones. I need to Google your condition to see if it connects with some of my other symptoms. Ty for sharing. I would love to know more!

Jump to this post

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.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 7, 2023
In reply to @rachelpabs "I was diagnosed 17 years ago at the age off 22. I have had a flu..." + (show)
@rachelpabs

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?

Jump to this post

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?

REPLY
rachelpabs | @rachelpabs | Nov 7, 2023

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?

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | May 5, 2023
In reply to @loribmt "Hi @julieanna57 As @eileen11108 mentioned in her reply to you, your platelet count of 1.2 million..." + (show)
@loribmt

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?

Jump to this post

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?

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Feb 9, 2023
In reply to @julieanna57 "I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis?..." + (show)
@julieanna57

I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis? I don’t think I even spelled those right. My Dr said your platelet count for a woman should be around 500,000 and mine were 1.2 million. I was tested for leukemia that was a painful test but gratefully negative. Dr said no hormones and an aspirin daily. But I need to know more. Not a day goes by that I don’t have a major headache. Im tired and I do get sick a lot. Spent a week in the hospital with pneumonia. Any advice would be appreciated. Im 58 years old.

Jump to this post

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?

REPLY
1 reply
annetterzam | @annetterzam | Feb 9, 2023
In reply to @julieanna57 "I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis?..." + (show)
@julieanna57

I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis? I don’t think I even spelled those right. My Dr said your platelet count for a woman should be around 500,000 and mine were 1.2 million. I was tested for leukemia that was a painful test but gratefully negative. Dr said no hormones and an aspirin daily. But I need to know more. Not a day goes by that I don’t have a major headache. Im tired and I do get sick a lot. Spent a week in the hospital with pneumonia. Any advice would be appreciated. Im 58 years old.

Jump to this post

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.

REPLY
View MoreView Less
Please sign in or register to post a reply.