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Old 03-21-2008, 08:14 PM   #1
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Elevated Platelets need advice

Hello all, my PCP has sent me to a hematologist after blood work showed my platelets at 555.000. I saw the hematologist tuesday, she ran some more blood work, cbc with differential, iron and jak2 and also ordered a liver scan after feeling around my spleen, she thinks it may be enlarged. She told me if everything comes back normal she'll see me again in 3 months and the treatment would probably be an aspirin a day but if something came back abnormal on the scan or i guess through the blood work they'd call me in sooner. She never really said what they were looking for so i'm kind of confused. I asked her what would cause elevated platelets and she didn't really have an answer for me.

My question is this... is she doing what she should be doing? i see a lot of people on here have bone biopsies and i'm wondering if she should have done this. I'm guessing it was serious enough for my pcp to send me to a specialist, but i'm not quite sure what they're looking for. Any advice would be helpful.

Also, what is a jak2 test?

Thanks!
~confused

 
Old 04-02-2008, 02:16 PM   #2
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Re: Elevated Platelets need advice

550,000 is not that high. I think your dr is right to just watch you - if she suspects your spleen is enlarged, that is a big deal. A misbehaving spleen can cause trouble.

If your platlets don't go any higher, you're probably fine. Platelets can go up for a number of different reasons - that's why she ordered an iron test - if you're iron deficient, your platelets go up. Or if you have an infection.

Chances are they'll go down by themselves. But keep track of that spleen!

Jill

 
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Old 04-11-2008, 10:55 AM   #3
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Re: Elevated Platelets need advice

My platelet count was 1,000,000 after I had pre eclampsia. I had to take baby aspirin for about 3 months and some bp meds. But they went down to 500 and thats about where it stays.

 
Old 04-12-2008, 06:53 PM   #4
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Re: Elevated Platelets need advice

Sorry... they want to see if you have ET. However, yours is probably just reflective of your pregnancy. I have ET and tested positive for the JAK-2 chromosone. I presented 4 DVT's last month and just recently went from Lovenox shots in the belly to cumadin in pill form... much better!!! They also have put me on 2000mg of Hydroxuria since my platelets were way in the millions and caused it to happen. But the good news is that I am now under control! Does anyone else have the JAK
+--2 Chromosone? Anyone know what else it causes or can cuase???

 
Old 04-26-2008, 10:52 PM   #5
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Re: Elevated Platelets need advice

Hello bionout89.. I was reading your post about the ET. This question is in reference to my sister. For the past 2 years, doctors have been watching her blood platelets. They have gone up and down, but the last year they were HIGH...1 Million. Long story short, she also had a "low grade glioma" head tumor, and hemo doc thought this was the cause of the high platelets. Making this Reactive Throm. Brain Tumor was removed, 3 days later she had a mild stroke. Caused her right arm, leg and hand to be affected. Leg is better, arm she can lift over her head, but still having problems with the hand and wrist. Going to PT for that. Anyway, she has been in the hospital twice now for platelet removal. don't know the correct name. She is on Hydrea, and they found out her iron levels were really low, so more meds for that. I noticed you mentioned low iron could cause high platelets! Did your doctor give you that info.?? That is very interesting.
She had the BMB and all came back ok, but doc said there was some scar tissue in that??? Thought that might be from the meds? She is just so worn out with this, and doc still thinks these platelets might just level out or come down, after a few months since the tumor is out. Thank God, all looked good with that, and she will be getting her MRI of the head to keep a check on things. You said your Platelets were very high, how high did yours go? Did your doctor sound concerned they were so high, and did he want you to get them removed, or up your meds. What meds are you taking, and how high the dose, or how many pills? I have been going nuts searching the net for some answers, but just can't find them... Would love to hear from you when you have some time... Thanks for listening.... and good luck with you health....Janatee

 
Old 04-30-2008, 09:56 AM   #6
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Smile Re: Elevated Platelets need advice

I am so sorry to hear about your sister! How horrific!! My little brother is actually a nuerosurgen, and I am sure the surgery was scary. I was fortunate in that it presented itself in DVT's in my legs and we caught them before they progresses to my lungs or heart. My platelet levels at their highest were around 1.5 million and climbing. My white blood cells were elevated as well and I had a slightly high red count. They thought I had CML, but I do not. They then tested me for the Jak-2 chromosone and I tested positive. I agree, they sure do not tell you a lot about the disorder when you go to the hematologist. I just bring a loooong list of questions with me. I am on Cuomadin and Hydrea. 5mg of coumadin, to thin my blood and remove the clots, and 2000 mg of Hydrea for platelet reduction. I have not had many side effects other than some tummy problems. This disorder gives a lot of fatigue. I also take asprin as needed for the burning discomfort that I get in my hands and feet, but I have to take it sparingly for it could cause problems later. Did they check her spleen and liver? Are they enlarged at all? These are also effects of the disorder. Mine have been for awhile as well. From what I understand basiclly my bone marrow has no "off" switch and continues to produce platelets and red bloods cells, the hydrea helps cut off the production. I am stablized now and my count is WAY down to 400... NORMAL!!! After being on Hydrea for 3 months now! He said I will probably have to take it the rest of my life though. Has your docter told you exactly what he thinks she has? Their are several blood disorders. They now think mine is Polythemia Vera. AND YES, low Iron definetly does have an effect, but each disorder is slightly different.

 
Old 04-30-2008, 11:05 AM   #7
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Re: Elevated Platelets need advice

Hello,
I am new to the boards and I find all of this very interesting and somewhat comforting since I have high platelets myself. I just found this out this year when I went for my yearly physical. I was sent for a blood smear which was normal, then for another blood count but the count was still high. It's been 626,000 and as high as 780,000. Monday I went to a hematologist, who has me going for a cat scan of my whole body tomorrow, if that comes back negative, I hope, then I have to have a bone marrow biopsy, also mentioned the JAK 2 blood test. All my other blood levels are normal and I feel fine. I am going to be 55 in August. These boards are so helpful. Would love to hear your thoughts.

Thanks,
Audrey 53

 
Old 05-13-2008, 08:35 PM   #8
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Post Re: Elevated Platelets need advice

Hi,
I have high blood platelet counts too. I went in for a physical and was told they were 544,000. I went to a hematologist today which was scary. He was in a cancer center afterall. Now my count is 573,000. I await the results of the rest of the blood work. What causes high blood platelets? I feel like I'm not getting a lot of answers. The doctors said he did not see anything that makes him worry, but then I'm thinking, "why all the tests?" Should I be worried about clotting? If so, how worried? Let me know if you have any answers

Thanks

 
Old 05-14-2008, 09:43 AM   #9
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Smile Re: Elevated Platelets need advice

Hi! They are probably just wanting to monitor you. Make sure that you go in and get the test they ask. When I went in initially for a physical and they found high platelets I was supposed to come back every 3 months and have my blood checked, they also put me on asprin therepy. I didn't take it too seriously. But then again, they didn't tell me all the serious complications my high platelets could cause. It wasn't until I went to the emergency room a year later with platlets in the millions and 4 blood clots that I realized I should have done what they asked. What they don't tell you is that many people can have high platelets and be asymptomatic all of their lives. You may not even have to be on asprin therepy yet. Let the doctors know if you are unusually fatigued or notice any unusual swelling or pain in your legs etc. You may want them to test for the JAK-2 chromosone too if they haven't already, as they are finding that this is present in a high percentage of blood disorder cases. I have it. Write a list of questions before you go into the appointment so you are prepared, often times they are in and out. Also, I ALWAYS ask for a copy of my blood work and I keep an on going file. My doctor in CO was really really good at explaining what everything ment. Have your docter do that. It is your body after all right??? I am also very tight with my nurse! George, I call him all the time with questions, since I am a coumadin lifer now and a hydrea lifer, I try not to feel bad to ask him what ever is on my mind, as that is what he is there for. Heck, my mom even calls him! Did I help you at all?:

 
Old 05-14-2008, 09:52 AM   #10
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Re: Elevated Platelets need advice

Quote:
Originally Posted by bipnout89 View Post
Hi! They are probably just wanting to monitor you. Make sure that you go in and get the test they ask. When I went in initially for a physical and they found high platelets I was supposed to come back every 3 months and have my blood checked, they also put me on asprin therepy. I didn't take it too seriously. But then again, they didn't tell me all the serious complications my high platelets could cause. It wasn't until I went to the emergency room a year later with platlets in the millions and 4 blood clots that I realized I should have done what they asked. What they don't tell you is that many people can have high platelets and be asymptomatic all of their lives. You may not even have to be on asprin therepy yet. Let the doctors know if you are unusually fatigued or notice any unusual swelling or pain in your legs etc. You may want them to test for the JAK-2 chromosone too if they haven't already, as they are finding that this is present in a high percentage of blood disorder cases. I have it. Write a list of questions before you go into the appointment so you are prepared, often times they are in and out. Also, I ALWAYS ask for a copy of my blood work and I keep an on going file. My doctor in CO was really really good at explaining what everything ment. Have your docter do that. It is your body after all right??? I am also very tight with my nurse! George, I call him all the time with questions, since I am a coumadin lifer now and a hydrea lifer, I try not to feel bad to ask him what ever is on my mind, as that is what he is there for. Heck, my mom even calls him! Did I help you at all?:
Hi,
My hematologist also mentioned the possibilty of hydrea. I have read that there are some horrible side effects such as developing leukemia. I would love to hear your experience on it. I go to the hemotologist for the result of my CAT scan on Monday. Thanks, Audrey 53

 
Old 05-14-2008, 06:02 PM   #11
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Re: Elevated Platelets need advice

Thank you. It sounds like you have a lot of information. What is hydrea? Or do I want to know. I plan to go in for remaining tests. I guess I'm still unsure what causes this. Does it have anything to do with weight? I have gained a few pounds in the last couple of years. One reason I went to the doctor is because I was concerned that as much as I work out I seemed to be gaining weight. But I am now 43. Maybe it just doesn't come off like it used to. Does anyone know if too many platelets is known to cause you to feel heavier or bloated? Also, if this is due to an iron deficiency, could I not just take iron? I just don't know enough about it but have learned a lot from this message board. Thanks for any advice. It is all appreciated
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Old 05-15-2008, 12:14 PM   #12
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Re: Elevated Platelets need advice

Hi bipnout89... This is Janatee, and I wrote you and gave you some info on my sister awhile ago. She is the one with the high platelets... Her platelets came down last week, and finally reached the 230 mark, but they did go back up a tad again. All these meds, and they do not stabilize. So, she has made an appointment for the Mayo Clinic. in Minnesota, on June 8th. She and her friend (who is a nurse) will be flying out. Her Hemo doc wants her to see a doctor out there who deals with blood disorders and high platelets. We PRAY they will find the answer, and some much needed help!!! She has been just so down, and dealing with the stroke recovery, I feel so bad for her.. My heart is just about broken . I pray each night and day, that the Good Lord will guide her to the right doctors, and he will work through their hands.
She is getting her MRI of the Brain as we speak. I pray all looks good on that also. I would go with her, but I have had a serious neck operation, and do not get around well. I will send my spirit . She told me she will be staying at a Hotel across from the Clinic, and that they do test on you all day, and you get to sleep in the hotel each evening. That sounds good. At least you are not stuck in a room with people coming in and out all night long, sticking you, and taking the BP..lol lol lol Been there, done that...I just want them to find the problem and get her back to better health, and at least if they know what is causing this, they can get her on the correct road for the the future. Well thanks for listening... Hang in there...Janatee

 
Old 05-15-2008, 12:20 PM   #13
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Re: Elevated Platelets need advice

Hi Sadlerk, First thing, DON'T PANIC.. Easier said then done. You can learn so much from all the people here on the boards. I see that bipnout89 wrote you, and she has wonderful info to share. I did not want to give you much of my info (on my sister) because I did not want to worry, or scare you. That can happen!

I think you are doing the right thing by going to the doctor and asking lots, and lots of questions.. Your problem might just be a very simple thing, and can be taken care of with meds. My sister has a very complicated problem, and she is finally getting the right help that she needs. I just keep praying, and I never give up HOPE. Keep us all informed of what the docs say with you, and keep your chin up. Good luck, Janatee

 
Old 05-16-2008, 09:22 AM   #14
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Wink Re: Elevated Platelets need advice

Just so you know I am a size 6, JUST KIDDING! I WISH!!! I am 37 and have 3 kids, I have gained some weight myself, and from what my doctor tells me it doesn't help keep them down, but it certainly isn't the cause! I have actually lost 20lbs in the last 3 months! Hydrea is a form of chemo that kills the platelets, red bloods cells and white bloods cells in your bone marrow. In my disorder my bone marrow has no "off" switch. The Hydrea helps stabalize my levels, and does a good job with virtually minimal side effects. So, with proper administration, supervision and care I plan on living a long full and happy life, as you should as well! The coumadin thins my blood and is getting rid of my clots, and will also prevent me from getting any more. I try not to anaylize my meds too much, I am lucky that they caught it and figured it out! Janatee, I hope that your neck is doing better, and I will prayer for your sister, I am sure that all will be well. My doctor told me that they are working on a ton of goundbreaking drugs for blood disorders as we speak they are in clinical trials and hopefully will be approved soon! Exciting stuff! I agree chin up!

 
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