This is my first time posting about anything like this. But here goes. So...I'm pretty much a healthy 23 year old - very energetic, active, etc. Then one day my doctor puts in a CBC for me (first one ever) and it came up with a 4 mil platelet count..they thought it was a mistake because everything else seemed okay. I did it again, still 4 mil.
I didn't think too much of it because I FELT fine...but it really started to scare me when the doctors/nurses were telling me how this is kinda serious and for me to not take it so lightly.
Of course the first thing I do is google everything there is to platelets and what it means to have a high count. No where have I ever found ANYONE with a platelet count of 4 mil...not even close.
At first they thought I had CML..did a bone marrow biopsy (which my dr told me the avg age of his patients was 70 yrs old...)...and thankfully it struck out for CML. Then they talked about ET..and all these other bone marrow disorders and basically...they really don't know what to do with a 23 year old woman who appears healthy with a platelet count this high.
The whole symptoms I do have..is probably bruising and that when I bleed..it takes a while to stop. Initially, they were worried that I'd have blood clots or a stroke, but now they are pretty certain that my platelets are just dysfunctional at the moment. Then...they tested me for the Von Willebrand factor, which I think I am positive for..so I guess that is why I bleed more rather than clotting.
So I guess..the reason why I'm on this forum is because...well...I'm scared. They mentioned Hydrea as treatment..but I just consulted with a Dr at Dana Farber and he actually does not want me to go on Hydrea because I'm young and theres a chance it might increase my chances of getting leukemia and he doesn't wanna do that. So he's thinking..Interferon might be in my future, and he basically just said I might feel like crap for a while..kinda like getting the flu.
But either way...I'm still nervous as hell.
Like I said before, I'm a pretty active girl and I love an adrenaline rush or anything fun and different. My dr mentioned no contact sports, skydiving, etc. I have sky dived before..and I was fine. I snowboard every winter, etc. And now that I found out I have some...blood disorder, I feel like I always have to think twice. This might sound kinda dumb - but I recently got into this sport where you play dodgeball on trampolines, and I felt sooo silly asking my doctor if I could do it, but I just needed that reassurance because I really don't want anything bad to happen but at the same time I wanna live my life the way I want to.
Does anybody else out there have a platelet level this high? What kind of treatment did you get? Did you have to change your lifestyle around at all?
The following user gives a hug of support to jc1207:
I'm a healthy and active 39-year-old and just recently had my first physical in 12-years. As in your case everything in my CBC came back normal except my platelets, which are at 1 million. I have no idea how long it's been that high, but it seems to be stable for now and I have no symptoms, other than I notice I small bruises more easily now, but I think it's just because I'm looking for it more and therefore notice it more. My initial trip to the doctor was actually for an overuse injury in my shoulder from biking.
My count is at a million, so I'm not close to where you are, but I don't plan on making any lifestyle changes other than changes that may help bring my platelet count down naturally, at least in the short-term. My doctor as recommended starting Hydrea, but I'm convincing her to get me a couple of months to see what I can do on my own in reducing my count, though better diet, fruits, vegetables, exercise, etc. If I can't do it then I'll consider Hydrea as a last resort.
As far a Hydrea causing Leukemia; From what my doctor told me, untreated ET (high platelet counts for no known reason) has a much better chance for turing into Leukemia than Hydea causing Leukemia, but the chances of either of them turing into Leukemia are very low anyway.
That being said, if I can find a way to avoid pharmies I'll do it. But my 1 million is pretty borderline (right now), so I'm not sure how this relates to your count.
I'm seeing a a Docotor I really like at Northwestern (Chicago) at the Hematology Oncology Assoc. of Illinois named Dr. Regina Stein. I really like her and she's straight up about everything. I think she's going to push for me to use Hydrea for a couple months, but I'm going to need to push back on that for a little while I think. I see you're in Boston, and there are a lot of great medical facilities there, but if you can travel and you want a second opinion maybe she's an option. In the short time I've known her she seems knowledgeable and has a great way of approaching things and explaining them to me. I think she's currently caring for about 50 ET patients. There's also an awesome Hematologist/Oncologist in Atlanta named Perry Ballard at Piedmont Hospital. My Mom saw him when she was diagnosed with breast cancer two years ago (and she's now two years cancer free!)
I just had my bone marrow biopsy today and it was a piece of cake. I was pretty anxious about it, up to the point where I was about to be a no-show at the last minute. Then my Dr. called in some Ativan and that chilled me out a little. But it was all in my mind, because the procedure was virtually painless. A little pressure, a pinch for a couple of seconds and that was it. Needless to say I was very relieved given the horror stories I had read on the net. I'm now hoping my results rules out CML, which seems likely that it will be ruled out.
Anyway, I won't making any lifestyle changes unless they are changes that can reduce my platelet count. I bike all over the streets of Chicago, fast as hell for hours a a time, I went to Costa Rica two years ago and did zip lining, rafting, hiking and everything else and I'm going to Peru this year. Quitting those things won't reduce my platelet count. But, good eating and living a healthy lifestyle can definitely help and not hurt.
Bottom line is, take precautions based on educating yourself on your own or through doctors you trust, but never make a decision out of fear.
-Scott (< edited >)
-When the going gets weird, the weird turn pro. --Hunter S. Thompson
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The Following User Says Thank You to gratefulpanic For This Useful Post:
Hi! My name is Megan and I'm 24. 2 years ago I got a blood clot in my head that resulted in me having a stroke and finding out I have a blood disorder (Polycythemia Vera). My platelets were close to one million. So not as high as yours, but still higher than normal. I had a bone marrow test done to diagnose me. Then started taking Warfarin (blood thinner) and Hydrea. It isn't the nicest drug to be on but it was the only thing that lowered my platelets.
I was able to keep active but I have to say I'd never consider something like skydiving, even if I didn't have this disorder haha! It does raise the risk of developing leukemia down the road but my Dr. said it was still pretty unlikely. My husband and I had a baby boy almost 3 months ago and the pregnancy was great, and the whole time my platelet count stayed in the normal range, so being pregnant actually did some good things for me. Now though the count is rising and I will probably have to get back on Hydrea again in the next few months. I really don't want to just because then I won't be able to breastfeed anymore and that kind of peeves me off. I asked about Interferon and yes it does make you feel like you've got the flu the entire time you're on it and it doesn't work in about 10% of people. I'd still be willing to give it a shot though. My blood doctor prefers Hydrea for me even though I'm 24 and would likely be exposed to it for years to come.
The Hydrea made me feel a little fatigued sometimes and slightly lowered my immune system, I was working at a daycare and getting sick even more than usual there. It was great to get off of it after taking it for 9 months, but it looks like I'll be on it again soon. I hope to just take 1/day because 2/day made me feel twice as bad, know what I mean? I'm also hoping that maybe I can take it intermittently, like until my counts are low again and then stop taking it until my counts are too high again, but I'll have to talk to the Dr. when the time comes for that. I just feel bad that I won't be able to feed my little boy anymore when I am on that stuff and that is the biggest downside to it for me. Otherwise it's manageable. Hope you find my experience with it helpful!
I was diagnosed 5 years ago with cml my platelet count was a little over 4,000,000 My hemotologist was stumped until he had a bone marrow sample checked and that found the abnormal gene been on Gleevec ever since so far so good
My age is 44 and my platelet count is 1,163,000/- less than 2/4th of yours, it had been going up from 542000 and I was not aware of it. When my left thumb there was a burning sensation and pain, it was found to be blood clot and now i will be going and seeing the hema for a complete check. My WBC is also 10,500/-
I suppose we have to take courage from the fact that treatment is there since the count will not reduce on its own. Keep up the courage.
I am sorry you are going thru this. My platelet level was at 2.2 million when I was diagnosed with ET. I was 26 yrs old. My platelets weren't as high as yours, but still way high. Your Dr., hasn't said what you have?
My Dr. did a bone marrow test asap, and that is what they came up with, plus other diagnoses. He started me out on Agrylin, I was on it for 4 yrs. My final yr I was on it, I was taking 9 pills a day, and my platelets kept elevating and I had severe Migraines from it. My Oncologist told me about Hydrea also and it's side effects, But I went ahead and tried it. That was 4 yrs ago.
When I started the Hydrea it helped me a WHOLE lot. My migraines were not as bad, and now I get them less often. I don't want to tell you everything I have gotten from this disorder, cause you may not have it, and I don't want to scare you.
I am 34, and a mother of 2 beautiful children. I do everything I did b4 I was diagnosed with ET, like Horeback riding, Walking, going to the lake, I still drink every now and then. This disorder can get you down, but you can't let it.
I go to my Oncologist now every 4 months for check ups, I get CBC's done all the time, But I am happy. I am still living today with my husband of 18 yrs, and our 2 children. My platelet level stays between 350,000 - 550,000. Which my Dr. says is normal for me. A normal person platelet level is 150,000.
As time goes by there is still little study on ET, and is very rare in young adults, and young children. They say the normal age of getting this is between the age of 50 -60 yr olds.
I wish you all the luck that they find out what you have and can cure it. I will definately keep you in my prayers. angel:
The Following User Says Thank You to Wishtogetbetter For This Useful Post:
nice to hear from you ,there is a mixup though I am 64 years old and have been diagnosed with CML now on gleevec for a little over 5 years.My Platelet and white blood counts have been normal for the past three years been having the typical side effects but have been enjoying life and taking things one thing at a time.good luck with your medical issues and live a long productive life