@ina2022 I have "sinking spells," but never black out ... yet. Mine are caused by wonky heart valve and sudden BP drops, so not ET.
The sweaty vomiting with faintness would make me ask if this could be a side effect of hydroxyurea, and if lowering my hydroxyurea dose might help. Or if an anti nausea pill could be prescribed.
Most medical textbooks tell docs that ET is a symptomless disease except for clots, so it's very common for patients to get waved away when they report problems. Then they follow up with the GP, get bounced to another specialist, then, when that shows nothing, booted back to the oncologist who will then (maybe) dig a bit more and figure it out. Also remember that most oncologists can count the number if their ET patients on one hand, and most of them are women over 50, not an age group docs take seriously.
Sad fact, unless you are going to an MPN specialist, you and your oncologist are almost on the same learning curve.
@nohrt4me Thank you for your reply. Taking to my Primary Care Dr. tomorrow. Had my 4 months check up with my Hem/Onc last week. Everything looked good. ET is very complex, maybe we just have to deal with it. Very frustrating.
"Hematologist is convinced it has nothing to do with ET."
Fiddlesticks. Shame on your hematologist.
Being dizzy and lightheaded are well-known symptoms of ET.
Because our platelet-heavy blood doesn't circulate well, we have less blood flow to the brain. Naturally, that can cause dizziness, not to mention killer headaches. It's to ease blood flow that many of us take a low-dose aspirin every day.
Hot flashes are another well-known symptom of ET!
Why? Our oversized and misshapen platelets are so weird that they set off our immune response. And the release of histamines ignites hot flashes. For me, the immune response also makes it hard to breathe -- than can cause lightheadedness too.
Many of us find taking an antihistamine helps. But since we are all different, please check with your doctor before taking anything new.
It's great no heart or brain issues were found! It's really frustrating, though, when our doctors don't know enough to give us the help we deserve.
Has anybody experienced being lightheaded/fainting, vomiting and sweating? It happened the second time to me yesterday. After the episodes I feel good again. Went to the Dr. aftet it happened first time 3 months ago. I had a Heart monitor for 12 days and a Brain Scan. Both results negative. I do have a lower heart rate, but Dr. said it is ok. Diagnosed with Jak2 in November 2022. I am 70 years old. Otherwise doing pretty good. Taking 1000 mg Hydroxuria every day. Hematologist is convinced it has nothing to do with ET.
@ina2022 I have "sinking spells," but never black out ... yet. Mine are caused by wonky heart valve and sudden BP drops, so not ET.
The sweaty vomiting with faintness would make me ask if this could be a side effect of hydroxyurea, and if lowering my hydroxyurea dose might help. Or if an anti nausea pill could be prescribed.
Most medical textbooks tell docs that ET is a symptomless disease except for clots, so it's very common for patients to get waved away when they report problems. Then they follow up with the GP, get bounced to another specialist, then, when that shows nothing, booted back to the oncologist who will then (maybe) dig a bit more and figure it out. Also remember that most oncologists can count the number if their ET patients on one hand, and most of them are women over 50, not an age group docs take seriously.
Sad fact, unless you are going to an MPN specialist, you and your oncologist are almost on the same learning curve.
Has anybody experienced being lightheaded/fainting, vomiting and sweating? It happened the second time to me yesterday. After the episodes I feel good again. Went to the Dr. aftet it happened first time 3 months ago. I had a Heart monitor for 12 days and a Brain Scan. Both results negative. I do have a lower heart rate, but Dr. said it is ok. Diagnosed with Jak2 in November 2022. I am 70 years old. Otherwise doing pretty good. Taking 1000 mg Hydroxuria every day. Hematologist is convinced it has nothing to do with ET.
"Hematologist is convinced it has nothing to do with ET."
Fiddlesticks. Shame on your hematologist.
Being dizzy and lightheaded are well-known symptoms of ET.
Because our platelet-heavy blood doesn't circulate well, we have less blood flow to the brain. Naturally, that can cause dizziness, not to mention killer headaches. It's to ease blood flow that many of us take a low-dose aspirin every day.
Hot flashes are another well-known symptom of ET!
Why? Our oversized and misshapen platelets are so weird that they set off our immune response. And the release of histamines ignites hot flashes. For me, the immune response also makes it hard to breathe -- than can cause lightheadedness too.
Many of us find taking an antihistamine helps. But since we are all different, please check with your doctor before taking anything new.
It's great no heart or brain issues were found! It's really frustrating, though, when our doctors don't know enough to give us the help we deserve.
@julmo wow. Had no idea you needed to do blood work that frequently. This is new to me. I have my first check next week. I am so happy that you have stabilized and I send best wishes that you remain so!
Has anybody experienced being lightheaded/fainting, vomiting and sweating? It happened the second time to me yesterday. After the episodes I feel good again. Went to the Dr. aftet it happened first time 3 months ago. I had a Heart monitor for 12 days and a Brain Scan. Both results negative. I do have a lower heart rate, but Dr. said it is ok. Diagnosed with Jak2 in November 2022. I am 70 years old. Otherwise doing pretty good. Taking 1000 mg Hydroxuria every day. Hematologist is convinced it has nothing to do with ET.
@dewz13 I am finally stabilized after being dx'ed mid November 2024. My platelets now vary from low 300s to mid 500s. I still get my blood work done every two weeks and have only been stable for about two months. To be honest, I didn’t think I would ever get there.
@julmo wow. Had no idea you needed to do blood work that frequently. This is new to me. I have my first check next week. I am so happy that you have stabilized and I send best wishes that you remain so!
@dewz13 I am finally stabilized after being dx'ed mid November 2024. My platelets now vary from low 300s to mid 500s. I still get my blood work done every two weeks and have only been stable for about two months. To be honest, I didn’t think I would ever get there.
Hi @julmo Welcome to Mayo Connect. Thank you for sharing your story with having ET and what’s been working for you to keep your platelet levels in the normal-ish range.
2.2 million was super high! It’s encouraging to see that anagrilide has been working well for you and that you’re not having any of the issues you experienced with the hydroxyurea. Wishing you continued success along your journey. I hope you’ll pop into more conversations!
What led to your diagnosis of essential thrombocythemia? Were you having symptoms previously or was this through routine bloodwork?
@loribmt thanks so much for writing. Believe it or not, I was diagnosed from the emergency room with a cat bite. My kitten was playing with me and I got bit. The emergency room told me she saved my life. I was hospitalized for a month from side effects from hydroxyurea. I’ve had a very rough time, but I’m finally stabilized. I still have a lot of side effects, but they are manageable. It’s nice to be able to chat with people in my situation. It makes me feel less alone.
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@nohrt4me Thank you for your reply. Taking to my Primary Care Dr. tomorrow. Had my 4 months check up with my Hem/Onc last week. Everything looked good. ET is very complex, maybe we just have to deal with it. Very frustrating.
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2 Reactions@janemc Thank you for your reply. Yes, it is frustrating. I have another appointment with my Primary Care Dr. tomorrow.
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2 Reactions@ina2022 I have "sinking spells," but never black out ... yet. Mine are caused by wonky heart valve and sudden BP drops, so not ET.
The sweaty vomiting with faintness would make me ask if this could be a side effect of hydroxyurea, and if lowering my hydroxyurea dose might help. Or if an anti nausea pill could be prescribed.
Most medical textbooks tell docs that ET is a symptomless disease except for clots, so it's very common for patients to get waved away when they report problems. Then they follow up with the GP, get bounced to another specialist, then, when that shows nothing, booted back to the oncologist who will then (maybe) dig a bit more and figure it out. Also remember that most oncologists can count the number if their ET patients on one hand, and most of them are women over 50, not an age group docs take seriously.
Sad fact, unless you are going to an MPN specialist, you and your oncologist are almost on the same learning curve.
-
Like -
Helpful -
Hug
5 Reactions@ina2022
"Hematologist is convinced it has nothing to do with ET."
Fiddlesticks. Shame on your hematologist.
Being dizzy and lightheaded are well-known symptoms of ET.
Because our platelet-heavy blood doesn't circulate well, we have less blood flow to the brain. Naturally, that can cause dizziness, not to mention killer headaches. It's to ease blood flow that many of us take a low-dose aspirin every day.
Hot flashes are another well-known symptom of ET!
Why? Our oversized and misshapen platelets are so weird that they set off our immune response. And the release of histamines ignites hot flashes. For me, the immune response also makes it hard to breathe -- than can cause lightheadedness too.
Many of us find taking an antihistamine helps. But since we are all different, please check with your doctor before taking anything new.
It's great no heart or brain issues were found! It's really frustrating, though, when our doctors don't know enough to give us the help we deserve.
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6 Reactions@dewz13
After diagnosis, we need frequent blood work to assess how whatever treatment we're having is working.
Once our platelet counts begin to drop, we don't need blood draws so often.
Did your hematologist recommend Hydrea (HU)? Please be aware that while some of us respond quickly to HU, others don't!
Be patient. Every dose is helping you!
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1 ReactionHas anybody experienced being lightheaded/fainting, vomiting and sweating? It happened the second time to me yesterday. After the episodes I feel good again. Went to the Dr. aftet it happened first time 3 months ago. I had a Heart monitor for 12 days and a Brain Scan. Both results negative. I do have a lower heart rate, but Dr. said it is ok. Diagnosed with Jak2 in November 2022. I am 70 years old. Otherwise doing pretty good. Taking 1000 mg Hydroxuria every day. Hematologist is convinced it has nothing to do with ET.
@julmo wow. Had no idea you needed to do blood work that frequently. This is new to me. I have my first check next week. I am so happy that you have stabilized and I send best wishes that you remain so!
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Hug
1 Reaction@dewz13 I am finally stabilized after being dx'ed mid November 2024. My platelets now vary from low 300s to mid 500s. I still get my blood work done every two weeks and have only been stable for about two months. To be honest, I didn’t think I would ever get there.
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Like -
Helpful -
Hug
4 Reactions@loribmt thanks so much for writing. Believe it or not, I was diagnosed from the emergency room with a cat bite. My kitten was playing with me and I got bit. The emergency room told me she saved my life. I was hospitalized for a month from side effects from hydroxyurea. I’ve had a very rough time, but I’m finally stabilized. I still have a lot of side effects, but they are manageable. It’s nice to be able to chat with people in my situation. It makes me feel less alone.
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Helpful -
Hug
7 Reactions@bobala How long did it take to get your platelets down?