Essential Thrombocythemia or Thrombocytosis

[ANN-IN-THE-UK]

Hiya
I was diagnosed 3 years ago with a platlet count of just over 400, i was put on aspirin, last feb 2005 was admitted to hospital with blood clots in my lung, visited hemotologist sept 2005 platelet count was 670 then, patted me on the head and i'll see you in a year sort of thing, since been on warfarin.

I read about others with aches and pains, but i also get kinda confused, and there are times when i'm freezing cold inside, and really tired and sore.

Don't go back to hemotology until this sept 2006, meanwhile they monitor whether my blood is thick or thin, every few weeks, thankyou to all who have put up notices, it's helped me, i felt really isolated thats why i've posted.

[julieinhawaii]

It;s really great to find this mesage board. I'm a 47 year old female who has had essential thrombocythemia since a blood test revealed it when I was twenty. My Platelet counts are always over 1 million. I have never been on medication even though the doctor keeps strongly suggesting it. What keeps me off it is that I feel fine. Part of feeling fine comes from a healthy active lifestyle. Lots of excersize to prevent the blood from clotting. I don't recommend no medicine for everyone, but so far it has worked for me. I will probably go on Hydrea or another medicine when I get older but for now I'm going with a healthy lifestyle. I would like to hear from others about their experiences with medication and no medication. Julie

[ohgal]

I've had E.T. for about 5 years (that I know of). My platelets went down to 425 and I quit going to the dr. for 2 years...bad mistake. I went for my work physical a few months ago and found out they were in the 890 range and now I'm going to the Hemotologist once again. I had a panic attack every time I went to see her and got put on Zoloft for that, whew, my visits are a little more pleasant now, lol. I had a bone marrow biop done when first dx and none since. My doc did tell me that my life expectancy was the same as hers ( I hope she's planning on living a long time, lol) But anyway, she has me on iron and baby asprin and the platelets are staying in the 600-700 range. It is very depressing for me to know that I have this but I would find diabetes depressing also. My dr also told me that many many people have this disorder (I think 17% of the US population) but they don't know it because so many people don't get their blood checked. It's nice to read that other people have fatigue...I didn't realize that it was from the E.T. Now I have an excuse for a messy house! Has anyone heard of platelets being extracted? My dr. mentioned that also.

[Genessa]

Hi Julie,

I'm 47, too, was diagnosed 2 years ago, but have recently begun taking hydroxyurea as my platelets started rising, my blood pressure started really rising, and I get headaches.
What I didn't realize until I began taking the hydra is that I was completely emotionally and physically fatigued, most likely from the high count (for me, it was 937) since this past December.

I had platelets in the 400s for years, thought it was great and never had any problems. I knew how high they were because I used to donate platelets 2 - 3 times a year. The blood center was ecstatic - they'd get two bags of platelets from me. Then, one day after donating platelets, the donor center called and told me I had a high platelet count and should consult my doctor - now it was in the 500s. After checking my count every couple of months, with no real change - the hemo told me not to come back until my internist told me to and not to take anything, no aspirin, no iron, nothing.

ON the hydra, my count is down into the 600s, and I am feeling better every day!

[Marlea]

Hi, all. I was dx with ET last October, but along with ET the hemotologist also said that my platelets weren't clotting properly - so in spite of elevated platelets I could possibly bleed out from a major cut - or alternatively get a blood clot! He tried anegrylide but I couldn't tolerate it, stomach-wise, so now I'm on Hydroxy, 500 mg. One day I take 3, the next day I take 2. But the longer I take it, the sicker I feel. The last test showed that my plates were down to 519 from 670, so that's good, but my red blood count was below normal and my RBCells were very enlarged. I think that the hydroxy is doing this and I'm getting more and more exhausted. I asked the nurse if I was anemic and she said my iron and hemoglobin were normal so I wan't anemic. I asked her didn't a low RBC for any reason mean anemia and she cut me off. I have another appt. with the hemotologist next week. I'm seriously thinking of going off meds for this altogether - maybe my body knows it's platelets aren't clotting properly and that's why it's making too many of them. I can't stand this exhaustion, I sleep 12 hours a day and can't even clean the house but before I started the hydroxy I was fine. Anybody else feel the cure is worse than the disease?