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Essential Thrombocytosis symptoms

Posted by lynn22 @lynn22, Apr 5, 2023

Having had high platelets since 2017 and doctors could not find a cause I paid to see a haematologist and I was diagnosed with ET in 2019. With a platelet level of 723 I was put on baby Asprin but unfortunately it did not suit me. I was then put on Clopidogrel but had an allergic reaction to it. I have refused to have a biopsy so far but said I will if levels go over 800. The haematologist made it quite clear that I am at a high risk of having a stroke. So I am taking Arnica homeopathy twice a day to thin the blood which helps the headaches which I have suffered with for years and take 2 paracetamol a day, usually when I wake-up as that’s when I get most headaches and sometimes it is like having a massive hangover. I also get tired and lightheaded and since January I am suffering with constant tingling hands and feet which according to the internet is another side affect. But as of two weeks ago I have tingling lips and tongue which is not listed as a side affect and I am wondering if anyone else also has these symptoms tingling symptoms. Having tried to see a doctor the surgery have said I can have a routine appointment which is weeks away. My doctor has agreed that I have a blood test every 3 months to monitor, at the moment it ranges from 750 to 800. Any advice gratefully received.

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sudutoo | @sudutoo | Apr 8 10:22am
In reply to @sudutoo "I have had diagnosed thrombocytosis for better than seven years. Caught the high count when I..." + (show)
@sudutoo

I have had diagnosed thrombocytosis for better than seven years. Caught the high count when I had a blood test done in hospital; treatment has been hydroxyurea and I also take a full size aspirin before bed, chewed. I have blood drawn every three months and hematologist visit every six months. My understanding is they do not know what the cause is; Dr., who is also an oncologist, had DNA done on blood on initial visit and found gene toward leukemia (JAK, I think), but no signs of cancer. The aspirin is something that I have taken for many years and was not prescribed, but my doctor has not said to reduce or discontinue. 700,000+ when found but now are around 400,000 to 530,000. The hydroxyurea is said to be working. If you are not interested in medications, you might discuss it with a professional whether you could donate platelets, if you are on medication this is not allowed, depending on the medication, I suppose. Potential stroke is the rational presented for treatment. I asked if diet could be a potential aid, and was told no.

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It would be interesting to know if these conditions are male or female dominant or if there are no value differences due to gender.

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2 replies
nohrt4me | @nohrt4me | Apr 8 10:40am

Yes, just to reiterate what was said above, patients with ET should never donate blood or organs. Also, plateletpheresis (taking out platelets) is used only to lower platelets in an emergency, and it is not used routinely as it sometimes is for patients with polycythemia vera, a related cancer.

HU dosing depends on many factors. These include age, driver mutation, history of clots, and how well the drug is working based on periodic blood tests. It also depends on whether the doc has bothered to get up to speed in recent dosing trends (start low if possible and adjust dose up or down as needed).

There's a big learning curve for patients who want to be informed about ET. Doctors do a pretty bad job explaining things. So info on the Mayo site or from the MPN Research Foundation is very helpful.

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nohrt4me | @nohrt4me | Apr 9 8:19am
In reply to @sudutoo "It would be interesting to know if these conditions are male or female dominant or if..." + (show)
@sudutoo

It would be interesting to know if these conditions are male or female dominant or if there are no value differences due to gender.

Jump to this post

You might be interested in the MPN Research Foundation site. It notes that women are 1.5 x more likely to develop ET than men.

One line of research is looking at whether ET works like an autoimmune disease that women are also more likely to develop than men. No answers yet.

ET just doesn't get the same attention as related cancers because it can usually be well controlled with existing meds and patients have a normal lifespan with treatment.

https://www.mpnresearchfoundation.org/essential-thrombocythemia-et
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dkmitchell | @dkmitchell | Apr 9 10:32am
In reply to @sudutoo "I have had diagnosed thrombocytosis for better than seven years. Caught the high count when I..." + (show)
@sudutoo

I have had diagnosed thrombocytosis for better than seven years. Caught the high count when I had a blood test done in hospital; treatment has been hydroxyurea and I also take a full size aspirin before bed, chewed. I have blood drawn every three months and hematologist visit every six months. My understanding is they do not know what the cause is; Dr., who is also an oncologist, had DNA done on blood on initial visit and found gene toward leukemia (JAK, I think), but no signs of cancer. The aspirin is something that I have taken for many years and was not prescribed, but my doctor has not said to reduce or discontinue. 700,000+ when found but now are around 400,000 to 530,000. The hydroxyurea is said to be working. If you are not interested in medications, you might discuss it with a professional whether you could donate platelets, if you are on medication this is not allowed, depending on the medication, I suppose. Potential stroke is the rational presented for treatment. I asked if diet could be a potential aid, and was told no.

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My brother and I both have the mutation courtesy of the JAK2 which resulted in no signs of cancer. My hemotologist kept repeating, "This is not cancer" over and over. I thank her for that. My platelet count was 1 million and my brother 900000. Hydroxyrea was too hard on my brother but I take it and experience 2 to 3 days of leg pain every week. My platelet count is now at 413 and I think my brother is a bit above that number. My hematologist has a patient who is only seen once a year. I would like to be a once-a-year patient too.

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lynnevb | @lynnevb | Apr 9 6:52pm

Hello All,

Here is a wonderful booklet for you to read. It may look too complicated at first glance but keep rereading it.
People with will ET are in the Myeloproliferative Disorder group.

I have had ET for 21 years. I am on Hydrea 500mg 4 days a week and 1500mg 3 days a week. I do not have any of the known mutations such as JAK2, CALR or MPL. They are still studying this disease and looking for other mutations.

https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27

Good luck everyone and study up. Knowledge is power.
Also you will feel much better if you drink lots of water and eat a diet free of processed foods.

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1 reply
lynnevb | @lynnevb | Apr 9 7:04pm

I have had headaches and tingling in extremities when I briefly went off the daily baby aspirin. Once i restarted the aspirin all of the headaches and tingling went away. Baby aspirin is to prevent stroke or cell death of major and minor organs. I was told the headaches and tingling are called microvascular ischemia (small vessel inadequate blood supple to an organ). If it goes untreated such as stopping the baby aspirin then blood cannot get to the brain or eyes or vessels of the heart, kidney and other important organs so then a person could have a stroke (decreased blood to the brain), heart attack decreased blood supple to the heart), blindness (decreased blood supply to the eye). I do not want to scare anyone but all of the research states that aspirin is important in preventing problems.
Good luck to you and everyone with this diagnosis.

Here is a document for your review.

https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27
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2 replies
jewelfaux | @jewelfaux | Apr 10 6:24am
In reply to @janemc "It seems that different people need different doses. What you're doing is working for you --..." + (show)
@janemc

It seems that different people need different doses. What you're doing is working for you -- that's what's important!

You might want to look back through your lab results to see if you can find your "driver mutation." Is it JAK2? CALR? MPL?

My oncologist says that those of us with the MPL variation seem to need a higher HU dose.

All good wishes!

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It's not necessarily true about the higher HU dose for MPL. I have the ET JAK2 mutation and need to take 1500mg of HU daily and aspirin to keep my platelets just over 450.

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janemc | @janemc | Apr 10 6:48am

Another indication that our individual requirements vary.

I'm so glad you've found the dosage that helps you.

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janemc | @janemc | Apr 10 8:04am
In reply to @lynnevb "Hello All, Here is a wonderful booklet for you to read. It may look too complicated..." + (show)
@lynnevb

Hello All,

Here is a wonderful booklet for you to read. It may look too complicated at first glance but keep rereading it.
People with will ET are in the Myeloproliferative Disorder group.

I have had ET for 21 years. I am on Hydrea 500mg 4 days a week and 1500mg 3 days a week. I do not have any of the known mutations such as JAK2, CALR or MPL. They are still studying this disease and looking for other mutations.

https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27

Good luck everyone and study up. Knowledge is power.
Also you will feel much better if you drink lots of water and eat a diet free of processed foods.

Jump to this post

Thank you so much for providing this link!

Extremely helpful!

REPLY
nohrt4me | @nohrt4me | Apr 10 10:41am

ET, cancer or not? I realize doctors disagree. But be aware that if you are applying for more life insurance, one question is "have you been diagnosed or treated for cancer in the last year?"

If your insurance company defines ET as a cancer and you tick "no," you may jeopardize your policy.

It's hard to find answers on this, but one patient handout notes that insurance companies vary. https://www.medlink.com/handouts/essential-thrombocythemia#

Please discuss this with your insurance agent if you are in the market for life insurance.

Gotta love ET. It probably won't kill you, but it will complicate a lot of stuff!

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