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Hello I have had ET since 2006 and they did routine blood test. Took the Hydroxurea for several yrs and it brought it
down and now have gone off Hydroxurea (was not working)..had side effects could not sleep with 1,000 mil of it. I take a baby aspirin every
day and watch what I eat and exercise all the time I am 67 and feel great ! they tried to get me to Interferon but the dr.
said SEVERE side effects..so I said no go. that is my story, Rose in Sacramento.
if your know of herbal remedy please e mail me at [email]rose@alwaysavailablepetsitting.com..than[/email]k you.
I had TIA 6 months ago. My platelet has always been high. I'm size 2, good BP, normal cholesterol level; in other word, pretty healthy except for my high platelet count. It went up to one million and was diagnosed with essential thrombocythemia. I was put on hydroxyurea which I took for 2 weeks, but my dizziness and tingling was getting worse, so I stopped taking it and tried fish and pomegranate. My platelet count went down to 729,000. I stopped doing everything. A month later my platelet is back to 997,000. Darn! I'll try fish again.
I had TIA 6 months ago. My platelet has always been high. I'm size 2, good BP, normal cholesterol level; in other word, pretty healthy except for my high platelet count. It went up to one million and was diagnosed with essential thrombocythemia. I was put on hydroxyurea which I took for 2 weeks, but my dizziness and tingling was getting worse, so I stopped taking it and tried fish and pomegranate. My platelet count went down to 729,000. I stopped doing everything. A month later my platelet is back to 997,000. Darn! I'll try fish again.
Hi cgibson,
I am no doctor but only through my own experience I would urge you to continue on your doctors recommendations.
Those symptoms you are experiencing is because of the thickness of your blood pooling in your extremities which says lack of circulation which is screaming potential clotting!
I say this because my feet were like a barometer. They remained painful until my platelets dropped down around the 700's. It's been only 6 years now I have been on the Hydrea + aspirin. I have had another recent blood test and my platelets have dropped now into the 300's and I'm feeling so much better. I was on 9 Hydrea per week and now the doc said for me to drop down to 7 per week. (1 per day) EASY!
Even now I would never contemplate stopping my meds because I believe the platelets will increase again and I would not risk it.
Yes I get a little tired but it's NOTHING compared to the crazy symptoms we ETers are blessed with.
I thank my intuition taking me across street for a second opinion 6 years ago. It was a hard decision as I was with the same doctor for 20 years and loyalty can be my downfall.
About 1 year ago my doc's surgery was closed so I went to another close-by doc who has been operating for about 40 years in my area. I needed some Hydrea. He said I didn't need them and it was clear he didn't know much about it. I politely told him my platelets had reached over 1.5million and I'm under a haematologist from a major oncology hospital. After he picked up his jaw he gave me my prescription.
I like reading any updates on 'our' ET and the stats have risen from 1:100,000 to 3:100,000.
I personally feel it is more prevalent than we think.
Oh another thing which I found was interesting....the nurse who took my blood had ET and she told me her sister had it as well!! I was floored. Can it be in a family??? My cousin has the opposite to me, very low platelets. I find this curious.
To everyone who is enquiring about alternative natural remedies. Eat well regardless.
I searched everything too and found myself travelling a long distance to a leading Chinese doctor. She told me to keep taking my tablets. That's it she knew nothing either.
Slowly your platelets will lower. It's a slow process so be patient.
Prognosis/Life Expectancy
Essential thrombocythemia patients have an excellent chance of living out a normal life span if properly monitored and treated as necessary.
It's now been more than 8 years since I posted this thread...and I'm happy to report the my wife is doing just fine. She's still on the 500/1000mg (alternating days) of Hydroxyurea and still successfully maintaining her platelet count in the 400-500k range, without complications. Testing is done every 3 months, and she takes here meds EVERY day. Just wanted to post this as an update to all who have the condition, to let them know that it is certainly possible (at least, in my wife's case) to control this condition and live a normal life.
Good luck to all...and eight years surely flies by!
I am a 71 year old male. I was diagnosed with ET in 2006. I hav e been on Hydroxyurea, 1000mg per day, for 10 years.
I see the doctor every 4 months. My platelets have been hovering between 550 and 600.
Two weeks ago my platelets were 670. The doctor seemed a little concerned and then said not to worry as it may be a fluke. He made an appointment for two months.
Today I had my regular 6 month checkup and my platelets were 760. He told me to make an appointment with my hematologist.
I got a prostate infection just over a month ago. I got antibiotics today. I wonder if that could cause the rise in platelets. Has anyone seen a rapid rise like this?
I am 6'1" and 175 lbs. No diabetes, good BP. I feel great. I heat with wood and have been cutting and splitting trees with all the energy I always had. There is no history of strokes in my family.
I have read that you can live a normal life span with ET and I also have read 10-15 years. I may be nearing the end. I will call my blood doctor tomorrow for an appointment.
I'm 24 and have recently suffered a massive heart attack and was related to ET so far all of my doctors have told me I'm the youngest they have ever treated and still looking into it. My platelet count was over 1,200,000 at the time of my heart attack. I was curious as too if anyone knew any natural ways to lower the platelet count. I have never tried drugs, never smoked a cigarette, workout every single day, no steroids no previous family history. Nothing that would point to why this happened. But it would be helpful if anyone that has been living with this could help out
JKing, sorry to hear you have ET. I was diagnosed 10 years ago but I didn't go to the doctor for a long time so I may have had it longer. I have read exposure to solvents can cause this.
I have been on hydrea for 10 years. My platelets spiked a few months ago and my doctor increased my dosage by 20%. Last time they were back to 500.
Are you on medication for this? 1,200,000 is pretty high. The outlook for ET is pretty good if it is managed.
I have never heard of a natural remedy. They say stress can raise them but I don't know if that is the case. Good luck to you.
I was just saying maybe my friend has too many too and that's why she donates. Just asking and not offering platlets. I've never asked my new friend the history of her platlets...so could be she has too many also and she donates.
I was diagnosed with ET last month. I am taking baby aspirin and have been prescribed Hydroxyurea but I am hesitant to take it as I am 52 and don't have any other high risk factors. I am vegetarian and don't have any other health issues apart from hypothyroidism. My platelet count was 950 2 months ago, then 843 a month ago and last week up to 1030. I am taking gingko and ginseng as I read that it can reduce the platelets but I have not mentioned this to my hematologist as I know they are more keen to push the pharmaceuticals.
I haven't had the bone marrow biopsy yet as I am questioning whether it is 100% necessary if they already know that I have ET.
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