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Old 03-06-2004, 08:56 AM   #1
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Question Thrombocytosis/high platelets??????????

I posted a little while ago about having a high platelet count, it was slowly going up, well i have not had another test yet in just over a year so i must go back soon. Anyway i have now found i am very tired all the time and don't have much energy,also i suffer with bad joint pain and joint stiffness.Also terrible memory/forgetfulness. I was sent to see a consutlant over a year ago now and he diagnosed Fibromyalgia but i didn't mention my high platelet count. I have lots of bruises on my legs and load and loads of blue veins. (probably because i am overweight)I have just read another post from someone on here with similar symmptoms to me but she said she has thrombocytosis???What is this,? what are the symptoms for this, should i have told the consultant who said i have fibromyalgia about my high platelet count. I feel so sluggish and want to sleep a lot, i am also mildly aneamic most of the time. Any info would be most helpful.

Cazajacks

 
Old 03-07-2004, 07:46 PM   #2
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Talking Re: Thrombocytosis/high platelets??????????

Quote:
Originally Posted by cazajacks
I posted a little while ago about having a high platelet count, it was slowly going up, well i have not had another test yet in just over a year so i must go back soon. Anyway i have now found i am very tired all the time and don't have much energy,also i suffer with bad joint pain and joint stiffness.Also terrible memory/forgetfulness. I was sent to see a consutlant over a year ago now and he diagnosed Fibromyalgia but i didn't mention my high platelet count. I have lots of bruises on my legs and load and loads of blue veins. (probably because i am overweight)I have just read another post from someone on here with similar symmptoms to me but she said she has thrombocytosis???What is this,? what are the symptoms for this, should i have told the consultant who said i have fibromyalgia about my high platelet count. I feel so sluggish and want to sleep a lot, i am also mildly aneamic most of the time. Any info would be most helpful.

Cazajacks
Hi - I, too posted a while back about high platelets, but didn't receive any responses. Just didn't want you to feel the frustration I felt by getting no responses! I am headed to the hemotologist on Wednesday to get some answers. The platelets have gone up from 590 to 690 in the last 3 months. Didn't worry me until I started doing research here online - good way to scare ourselves! On top of all that, I, too, have been diagnosed with fibro - 7 years and counting now. Also feel sluggish, want to sleep, and can when I shouldn't - but if I need to at night, well, gotta have my Zanaflex and Tylenol PM or can't get to sleep. What I am getting at is this - the "wastebasket diagnosis" of fibromyalgia maybe needs further investigating in itself. See, when labeled with fibro, most doctors stop looking further. Oh, it's just fibro, she needs to learn to deal with it. I deal with it, and now, lo and behold, there is something documented that has similar symptoms to fibro - once on paper, it's a whole new ballgame. Anyway, this was more for moral support - I have no answers, but at least you know you don't stand alone! Take care - Liz (still would like to hear from others who have the high platelet issue w/elevated WBC, since no one posted to my last post!)

 
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Old 03-09-2004, 11:08 AM   #3
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Re: Thrombocytosis/high platelets??????????

Liz, would you be kind enough to let me know how you get on with the heamo. I did read your other post about high platelets and kept watching it myself for an ansa. I am a bit of a worrier so i am not going to take this too serious but i have spoken to other Fibro friends and some are in wheelchairs, well i'm not like that????I have now got terrible legs absolutley covered in awful black/blue veins and sort of bruises or what look like bruises but never go, and now am having leg pain when i walk, i have checked for any lumps etc but nothing there, so i am not too worried, but at the age of 39 i will never ever show my legs again for the rest of my life. I also notice that you only normally get the bruise/vein thing when your platelets are low???? I am going back to my doc this week and asking her for another blood test as i have not had one done in over a yr for a platelet check, i will update you.
Liz have you any other problems apart from fibro/high platelets.
Take Care

Caz

 
Old 03-09-2004, 02:14 PM   #4
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Hi - Thanks for the response - gotta say I was feeling ignored when I posted before!

Anyway, heading to hemotologist tomorrow, will let you know if they have anything to say.
Liz

 
Old 03-12-2004, 05:24 PM   #5
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Post Re: Thrombocytosis/high platelets??????????

Hi - I went to the hemotologist on Wednesday. At first she didn't seem real concerned, but I must have said something that all of a sudden made her more attentive. Not even sure what it was! At first, she just wanted a recheck in 2 months, but then she decided to run more bloodwork and I go back before the end of the month. She does think the ischemic colitis I had in October may actually have been due to a clot, which means the blood issue came first, not the other way around. SO.....I'm curious to find out what the blood results will be this round. As to how we got along, I think she was a very approachable doctor. Hope as is well - Liz

 
Old 03-13-2004, 09:22 AM   #6
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Re: Thrombocytosis/high platelets??????????

Hi Liz do keep me updated because i am interested. I went back to see my doc on Wednesday as i think i may be having the change of life but she said it is probably my Thyroid instead. Anyway she has ordered for another platelet count which i am going to have eitherMonday or Tuesday. Where i live you can just go to the local hospital with your form and have it done at any time between 9 an 5 anyday so its not too long a wait. I live in England so i dont know how long your blood works will take. Once i have it done if anything shows up they normally ring within 2 days so it should not take too long,a nd whilst there they are going to recheck my thyroid. Iam having some horrible symptoms so if thyroid shows up wrong hopefully they can correct it otherwise i reckon it is the menopause??
speak to you soon

Caz

 
Old 03-13-2004, 06:53 PM   #7
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Re: Thrombocytosis/high platelets??????????

Quote:
Originally Posted by mamafoley
Hi - I, too posted a while back about high platelets, but didn't receive any responses. Just didn't want you to feel the frustration I felt by getting no responses! I am headed to the hemotologist on Wednesday to get some answers. The platelets have gone up from 590 to 690 in the last 3 months. Didn't worry me until I started doing research here online - good way to scare ourselves! On top of all that, I, too, have been diagnosed with fibro - 7 years and counting now. Also feel sluggish, want to sleep, and can when I shouldn't - but if I need to at night, well, gotta have my Zanaflex and Tylenol PM or can't get to sleep. What I am getting at is this - the "wastebasket diagnosis" of fibromyalgia maybe needs further investigating in itself. See, when labeled with fibro, most doctors stop looking further. Oh, it's just fibro, she needs to learn to deal with it. I deal with it, and now, lo and behold, there is something documented that has similar symptoms to fibro - once on paper, it's a whole new ballgame. Anyway, this was more for moral support - I have no answers, but at least you know you don't stand alone! Take care - Liz (still would like to hear from others who have the high platelet issue w/elevated WBC, since no one posted to my last post!)
Hi Liz, I have polycythemia. I have high red, white, and pletelets. In January, my platelets were 709 then I went back Friday and they came down to 604, my hemagologist said "once they hit 700, I should be on medication (Hydrea) to slow the bone marrow down from over producing, but now that they are 604, no medication yee haa. I have to go back in 3 months for another blood count. I have talked to a girl on here that hers were 905 and no medication. I went for phlebotomies, 1 every 3 weeks. I go for my last once next Thursday. They have brought my red, a white and hemotocit down. Go to the Dr and find out about the count. I found out a year ago I had polycythemia and am having a hard time dealing with it because of all the bad information I have gotten of the internet about it. I ask my Dr things that I read on the net and she tells me it is all crap. Anyone can post a website. Thx. Keep me posted
Cheryl

Last edited by NASCARfan; 03-14-2004 at 07:07 AM.

 
Old 03-14-2004, 01:23 PM   #8
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Re: Thrombocytosis/high platelets??????????

Hi Cheryl
What is this Poly thing you have, and can you have it if you only have high platelets.
Sorry for asking but i am at my wits end. My platelets were only slowing rising last time i checked but i feel very out of sorts and unwell at the moment. When i last had my platelet count the doc told me i don't need it checking for a year but everyone else has told me to get it checked more often??????
I am atthe moment arguing with my doc about what is wrong with me. I feel so bad but cant say it what way. I reckon i am having the change of life she reckons its my thyroid palying up and wants to keep waiting for 3 monthly check ups, this has been going on for a long time now and i don't want to wait any longer, i want this sorted. For all i know it could be related to my platelet count that i feel unwell??/ I feel so very very tired but then i can;t always sleep at night,i have no energy at all and i am so bad tempered all the time no one talks to me in my house unless they really have to as i sweat at them???/Any way sorry to go on but i really wanted to know what your poly thing is and how did you realise something was wrong/

Caz

 
Old 03-18-2004, 05:23 PM   #9
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Re: Thrombocytosis/high platelets??????????

Hi - I have been diagnosed with PV recently, my platelet counts seem to be all over the place, the other day the CBC showed 690, two weeks before it was 766, three days before that 870 and this is without any treatment. I had a BMB (bone marrow biopsy) done which confirmed an early stage of PV. My hematologist seems more concerned about my hematocrit, it's at 51.0 which is borderline so he is only putting me on 81mg aspirin daily plus a few phlebotomies.

 
Old 03-19-2004, 09:11 AM   #10
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Re: Thrombocytosis/high platelets??????????

Hi, what is pv, i don't know what it is? Also why do they do a bone marrow test?
Sorry also what is your heatocrit ? I still have not had time to have my blood test done, they gave me the form over 2 weeks ago but i am feeling so unwell at the mo i don't want to go out, also i have 2 kids with disabilities i find i am always too busy.
I have promised myself i will have my blood test this coming monday, so i should know by wednesday if anything showed up???


Caz

 
Old 03-24-2004, 10:14 AM   #11
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Re: Thrombocytosis/high platelets??????????

Hi, i have now had some of my blood results back, i noticed you said the rough range for hct was 39.0 - 51.0, well i have had a phone call asking me to go see my doc but the receptionist did not know why, i asked about my hct count and she said it was 0.0382ratio, is this ok??? i noticed mine begins with a nought or should i ignore the nought and take the count as 38?????
Please advise. Platelets were 450, so not too bad. Thyroid not back yet.

 
Old 04-20-2004, 01:14 AM   #12
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Re: Thrombocytosis/high platelets??????????

This is going out to anyone that can help with the way I am feeling because of news my wife received yesterday (19Apr04). Since 2001 Jan has been going to hospital for regular checkups for a high platelet count. This was a chance finding following a referral from her doctor for high blood pressure. My wifes readings have been hovering around 600 (570-665) - sometimes going down, sometimes going back up. Last year the doctor at the hospital suggested that she go onto medication and have a bone marrow check, but like me about such things, she said why do such things when she did not feel unwell. In the end the consultant agreed to leave it. At this last check, again the doctor said he wants to do a bone marrow check, which we were told would be by taking a small piece of bone from around the hip area to do some tests. He told here she would be in and out in a day. He also advises taking medication - can't remember what the name was though.

We wanted to know what all this meant 'high platelets' and was told that if it got to high it could bring on a stroke or lukemea. And when we asked about side affects from the drug - we was told that in the main the drug was safe, but that there is controversy that long term taking of the drug could also bring on lukemea (after severel years). Considering Jan (that my wife) is only 49 and that the doctor said that she would probably be on the drug for the rest of her life, that went down like a lead baloon. The doctor also gave us a leaflet to read.

In the end Jan agreed to the day op, but did not agree to the medication just yet. She feels she would rather risk getting lukemia naturally rather than bringing it on by taking drugs.

When we got home she felt really upset and agree.

Can anyone suggest some good reading matter.....

 
Old 04-20-2004, 06:12 AM   #13
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Hi all - this is all so confusing! I wish I could help you with your questions about your wife, but I'm afraid I can't help! I have been told I have a "mild myloproliferative disease" and don't need treatment. My levels (platelets) keep hovering in a range from a low of 545 to a high of 690. The only thing they have done is prescribe ferrous sulfate to bring up those levels. I seem to always have a headache, always tired, they always use a baby needle for me to draw blood, had ischemia (colitis version) twice since last fall, a bleeding ulcer, and on.....

The main reason I am confused is that people on the board here receive treatment at various levels, and I am at the level where others receive that treatment in terms of numbers. So why does one doctor say just let it alone (not even do the marrow biopsy) and another say, you are at risk of this, this and this, so let's do the biopsy, and proceed with treatment. Am I being undertreated, and if so, am I at risk of something happening (and what?).

Grrrr! I hope someone out there has some answers!
Thanks! Liz

 
Old 05-22-2004, 01:28 PM   #14
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I just wanted to say, please don't ever say you would not show your legs again... be thankful that you have your legs, and that you can walk so well. I'm not putting you down for saying that, because there are parts of my body I want to hid from others, but I guess this is how society has shaped us. Sad isn't it.... My sister has a high platelet count also. Her test were 518,000 and she will be getting another blood test in a few weeks. If they are any higher doc will send her to a specialist. Funny what I have been reading and wondering if the Thyroid has anything to do with all of this in some small way. She has had the Thyroid test, but they seem to be at a normal level. I told her to keep digging till you find the answer. Well, I just hope you can get yourself back to feeling better. Don't hide your legs, walk proud.....take care janatee

Last edited by Janatee; 05-22-2004 at 01:29 PM.

 
Old 06-06-2004, 07:52 AM   #15
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Re: Thrombocytosis/high platelets??????????

im jealous.. you have a high platelet count.. and i have a very low one. i would be SO excited to just have 100,000. well, i would be excited to have 50,000. life is funny isnt it?

 
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