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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Hello Lynn, I was diagnosed during a spine surgery with platelets in the mid 700s in 2018. I went through all chemos available resulting in most major side effects, skin cancers, nausea, itching, etc. I totally quit all chemo for 3 months to give my system a break from chemicals. I then had a hematologist recommend mini dose of Jakafi, 5 mil twice a day, beginning January 2022. Side effects dwindled to slight anemia and fatigue, although maintaining 10% weight gain, but blood platelets have dropped to within normal range at 415. I'm 84, with metal throughout my body from injuries including a broken spine with rods. I now feel great and plan on going to the century mark.
Run this by your physician and the best of luck in your prognoses.

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@edgy

Hello Lynn, I was diagnosed during a spine surgery with platelets in the mid 700s in 2018. I went through all chemos available resulting in most major side effects, skin cancers, nausea, itching, etc. I totally quit all chemo for 3 months to give my system a break from chemicals. I then had a hematologist recommend mini dose of Jakafi, 5 mil twice a day, beginning January 2022. Side effects dwindled to slight anemia and fatigue, although maintaining 10% weight gain, but blood platelets have dropped to within normal range at 415. I'm 84, with metal throughout my body from injuries including a broken spine with rods. I now feel great and plan on going to the century mark.
Run this by your physician and the best of luck in your prognoses.

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Thank you very much for this I shall speak to my haematologist. I am really pleased it has helped you and you feel well.

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Hi Lynn. I was having tingling and numbness in my lips. It felt weird when I talked sometimes. That is why I went to the doctor in the first place. I did the biopsy and I had the Jak2 mutation. This with the high platelets prompted the specialist to place me on 500 ml Hydroxyuria 7 days at first, now 4 days a week,and a baby aspirin. It’s been 2 years. Platelets are at acceptable levels. Itchiness and fatigue once in a while are the only side effects. Hope this was helpful.

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Hi Sandy, thank you for letting me know your experience, I expect that is my next decision.

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@lynn22 How much arnica and what potency? I’ve taken 30C for healing after injuries or heavy workouts (that’s been awhile), and one time took 1M after a surgery. Help appreciated!

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Hi, I am taking 200 twice a day, my homeopath says I could take 3 or 4 times a day if I feel I need to.

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I have Essential Thrombocytosis- JAK 2 Mutation.
My platelets have been way over a Million- 1 million 531 thousand to be exact.
I don’t take aspirin anymore- (does nothing for me) I take 450mgs of Vitamin E- Natural blood thinner, Anticoagulant.
I was also told to take Hydroxyurea which I had an allergic reaction- I now take Resveratrol- 3000 mg daily.
I also take cinnamon- salmon (Omega 3’s) Vitamin D3-
I no longer have headaches with taking these.
My skin doesn’t tingle anymore- if I do get a headache? I take Tylenol.
Diet! Mediterranean diet to be exact. Blood is a protein- staying away from meat that will increase high platelets.
I now drink a gallon of water daily. Water decreases platelet count.
For the tingling in my toes?
Gabbapenten 100mg.
That takes it away.
With high platelets- watch your blood pressure? Mine went up- I’m now in 40mg of Lisinopril.
I can’t remember when my platelet count was less than a million- lol
All you can do is manage the symptoms and help your body by decreasing the platelet count.

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Hi,
Thanks for your input.
I have JAK2 mutation too, just found out in April.

How do we know if baby aspirin will help?
Do you take cinnamon capsules? How does Reservatrol help, thought that’s raised it.

My Chinese Med Dr said to daily take an herb.
They taste strong, like gingery type peppery something.
Good for all blood stagnation, circulation, alleviate pain, induce resuscitation.
You just swallow it fast with water.

Idk why but Exedrin migraine makes the foot and toe burning and tingling stop.

What do you mean no meat? Like you only eat fish? I read that increases platelets too. Seems many foods whether meats, or vegetables raise the count.

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Thank you for your comments. Didn't know about meats and fish raising platelet counts. Does anyone know which meats and which fish?

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@cbabby

I have Essential Thrombocytosis- JAK 2 Mutation.
My platelets have been way over a Million- 1 million 531 thousand to be exact.
I don’t take aspirin anymore- (does nothing for me) I take 450mgs of Vitamin E- Natural blood thinner, Anticoagulant.
I was also told to take Hydroxyurea which I had an allergic reaction- I now take Resveratrol- 3000 mg daily.
I also take cinnamon- salmon (Omega 3’s) Vitamin D3-
I no longer have headaches with taking these.
My skin doesn’t tingle anymore- if I do get a headache? I take Tylenol.
Diet! Mediterranean diet to be exact. Blood is a protein- staying away from meat that will increase high platelets.
I now drink a gallon of water daily. Water decreases platelet count.
For the tingling in my toes?
Gabbapenten 100mg.
That takes it away.
With high platelets- watch your blood pressure? Mine went up- I’m now in 40mg of Lisinopril.
I can’t remember when my platelet count was less than a million- lol
All you can do is manage the symptoms and help your body by decreasing the platelet count.

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Please advise how you decided to take the supplements you list and how you learned that meat increases platelet counts, and specifically which meats. Thanks!

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