Essential Thrombocythemia: Looking for information and support

Yep, I suppose I am. As I have mentioned, I had untreated ET from age 52 that was discovered after an accident ten years later. By then, my platelets numbered in the millions, while they been around 450,000 at age 52. During that time, I had been actively pursuing street photography. The difference between me and everyone else was that I have always looked younger than I am. Still do. When I met my hematologist in 2014, he said, "Ummm.....you don't look like 62." I explained that I had always appeared younger than I am. At that time, people who were in their early thirties assumed I was their age. I was in my mid-thirties when people stopped taking me for a teenager. Even now, as I am approaching my 74th birthday in October, people are just beginning to see me as 60. In fact, I reminded my hematologist, last year, of his assessment of my age when we met and I said, "So what do I look like now?" Without a pause, he said, "Sixty." I laughed and said, "So, I still don't look 62." I don't know what that has to do with my platelets, exactly, though.

@garyr443 you're lucky, platelets in millions cause clots that can cause heart attack or stroke, depending on where clot is and where it's traveling.....this is why dr sort of insist on HU after age 60 because you blood vessels are more occluded and therefore clots more dangerous. Also baby aspirin, which makes platelets less sticky and therefore minimize clot risk

@garyr443, thank you for posting really interesting information. I did not know diet effected platelet counts. I was following a Keto diet which helped my inflammation and made movement painless again, unfortunately it raised my cholesterol levels to dangerously high. Now trying to balance carb and fat intake without loosing too much weight. It is fine balancing act. Please keep us informed about your progress and what/if you find a diet that helps you.

@1995victoria When I was first prescribed Hydroxyurea, my platelet count had been recently discovered to be in the millions, yet I had no clots or any worries about heart attack or stroke. The HU relatively quickly brought my platelet count into the normal range, after tinkering around with the dosage for a few months.

@1995victoria I almost forgot that my ET is a blood cancer because my hematologist rarely mentions it.

@janemc I wish the Hydroxyurea was more effective at that. Depending upon what I eat, my platelet count can shoot through the roof, Hydroxyurea or not. If I eat what the doctors and nutritionists recommend (a "balanced diet" with Omega 3 fatty acids, leafy greens,etc) it raises my platelet count. As soon as I stopped eat salmon and tuna and cheddar cheese, my platelets dropped back to the normal range. I can't eat grains and dairy because it raises my blood sugar and I don't want to wind up obese and diabetic again. I'm left with nothing to eat but meat, which works fine for me because it's the staple of my paleo diet, but then doctors tell me it's causing my supposed kidney disease that I have never had any symptoms of. So, what CAN I eat, then?!

Don't be put off with the "C" word. LeukemiaLymphomaSociety has wonderful website with resources and information. Go to a conference if near by. I went and was very impressed with all the presentations. BTW, they renamed themselves BloodCancerUnited. I've been taking hydroxyurea (HU) for 6 years now, only first year my gut was unhappy. Platelets under control, and I'd rather be taking HU than getting a stroke or heart attack from clots....

@vivoconte Muchas Gracias!!! Toda esta información me está ayudando muchísimo. Mil gracias! Te mando un abrazo enorme y deseo lo mejor para ti. Voy a estar pendiente de este post y también preguntando cómo están todos! Abrazos 💕

@asindelar, no sé decirte exactamente cuanto tiempo después de comenzar la medicación empecé con los síntomas, pero si puedo decirte que la fatiga la manejo haciendo actividad física dos veces por semana y descansando sin culpa cada vez que lo necesito.
Para el pelo comencé hace 3 meses a aplicar minoxidil tópico porque luego de tantos años de caída era necesario actuar. Por ahora el minoxidil me está dando resultado, aún se cae pero menos cantidad y me está creciendo mucho pelo nuevo, eso me tiene muy contenta!

@vivoconte Hola! Muchas gracias por compartir! La verdad estaba muy preocupada y asustada de empezar la medicina. Pero todas las historias que he leído en este fórum me han hecho sentir mucho mejor mentalmente. Si eres muy joven! Yo soy unos años mas grande que tu, pero me considero joven también!
Si no es mucha molestia compartir, has tomado suplementos para combatir la pérdida de cabello y fatiga? Hay algo que te ha ayudado? Al cuanto tiempo de tomar la medicina te dieron esos síntomas?
Muchas gracias! Has alegrado mi día y mis preocupaciones. Saludos!!