cazajacks
03-06-2004, 12:56 PM
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
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mamafoley
03-07-2004, 11:46 PM
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!)
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!)
cazajacks
03-09-2004, 03:08 PM
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
Liz have you any other problems apart from fibro/high platelets.
Take Care
Caz
mamafoley
03-09-2004, 06:14 PM
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
Anyway, heading to hemotologist tomorrow, will let you know if they have anything to say.
Liz
mamafoley
03-12-2004, 09:24 PM
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
cazajacks
03-13-2004, 01:22 PM
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
speak to you soon
Caz
NASCARfan
03-13-2004, 10:53 PM
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
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
cazajacks
03-14-2004, 05:23 PM
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
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
Tenebre
03-18-2004, 09:23 PM
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.
cazajacks
03-19-2004, 01:11 PM
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
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
cazajacks
03-24-2004, 02:14 PM
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.
Please advise. Platelets were 450, so not too bad. Thyroid not back yet.
Vaughan, Dave
04-20-2004, 05:14 AM
:confused: 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.....
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.....
mamafoley
04-20-2004, 10:12 AM
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
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
Janatee
05-22-2004, 05:28 PM
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 ;)
Strwbryznsuga
06-06-2004, 11:52 AM
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?
SnowyLynne63
06-06-2004, 08:21 PM
Normal Platelet count 150,000 to 350,000
itvilcu
06-30-2004, 03:15 AM
my reference book defines it as:
Thrombocytosis: An increase in number of platelets in the circulating blood.
I am the opposite of you, I have LOW platelets (ITP....Thrombocytopenia). I do know from all my research I have done on platelets, that if you have a HIGH count, you are at risk of blood clots. Taking a small amount of asprin (75mg/day), will help prevent blood clots.
Tracie
Thrombocytosis: An increase in number of platelets in the circulating blood.
I am the opposite of you, I have LOW platelets (ITP....Thrombocytopenia). I do know from all my research I have done on platelets, that if you have a HIGH count, you are at risk of blood clots. Taking a small amount of asprin (75mg/day), will help prevent blood clots.
Tracie
Jessi262
07-10-2004, 02:27 AM
Hey, My mom has thrombosytosis and fibroalmolgy (misspelled) there are medications that you can go on to help the pain in the joints butit will cause you to be sleepy afterwards so you have to take it a night time. The tiredness comes from your blood not curculating like it is suppose to. My moms platelets are in teh millions and she is boarder line for lukimea (misspelled) but they have her on medications. She has to take her medication for the rest of her life. You need to get your blood tested at least once a month to make sure it is okay because if it goes to high or to low you could get lukimea. Also, with your platelets being high you do get blood clots and it could be life threating. I know none of this is probably helping but I have learned alot over the past 8 years with my mom having high blood platelets. It would help if you have individusal question. I hope everything turns out good for you. You are in my prayers just like everyone else is.
mercedez
07-19-2004, 04:25 AM
Hi Sue,
Are you still around ? I haven't seen you post since May. I have ET in the 700 range.
Mercedez
Are you still around ? I haven't seen you post since May. I have ET in the 700 range.
Mercedez
Janatee
07-30-2004, 10:11 PM
Hi Jessi262 Sure hope you are still out there. My sister had blood work and found out her platelets are high. Her count is 669! She went to see the Hematalogist, and he ordered more blood work. He did tell her that this COULD be caused by a very low Iron count.... If this is not the problem, then they will do a bone marrow biobsy. Jessi, before they put your Mom on meds, how was she feeling... My sister has had headache/funny sensation in her head. She has had 2 CT scans, and a MRI... Nothing shows (we are thankful of that) but she is always feeling bad. She also feels weak... She is pale also. Now, she has just lost 50lbs on Weight Watchers... so I don't know if this has any thing to do with the low Iron count.....On Wed. she is also having a CT scan of the liver and spleen. I know she is very upset. who wouldn't be? But we are praying all turns out well. I keep telling her be thankful that they found this before it reached a critical point. Also she is a smoker, and since this has happened, she had just about quit. She is 45 years old.
Any info you can give us would be greatly appreciated.. Sure hope your Mom is doing well. What meds are she on..??? Would like to hear from you> Janatee :confused:
Any info you can give us would be greatly appreciated.. Sure hope your Mom is doing well. What meds are she on..??? Would like to hear from you> Janatee :confused:
rcomissi
08-27-2004, 11:04 AM
I have an aunt that was recently diagnosed with Essential Thrombocytosis. She has been sick for many years, but never went in to check on herself because she has a very sick daughter.
About 2 years ago, she has some blood work done at a former doctor, and was told they would call her back if they found anything. She never heard back from them about the blood work. Well here she is two years later. She finally found a doctor that looked more into her health issues. He is beyond extremely angry that the former doctor never called back. My aunts’ blood cell count is at 15 million. Her new doctor doesn't know she is still here since her blood is now like sludge.
She has been on Agrylin (sorry if that is spelled incorrectly), and it lowered her count to 700,000, but over the last two weeks, it has stopped working.
Has anyone faced the problem of looking for a procedure past Agrylin? There is so little information on this disorder, and I don't see many medical resources for help after diagnosis.
About 2 years ago, she has some blood work done at a former doctor, and was told they would call her back if they found anything. She never heard back from them about the blood work. Well here she is two years later. She finally found a doctor that looked more into her health issues. He is beyond extremely angry that the former doctor never called back. My aunts’ blood cell count is at 15 million. Her new doctor doesn't know she is still here since her blood is now like sludge.
She has been on Agrylin (sorry if that is spelled incorrectly), and it lowered her count to 700,000, but over the last two weeks, it has stopped working.
Has anyone faced the problem of looking for a procedure past Agrylin? There is so little information on this disorder, and I don't see many medical resources for help after diagnosis.
SHARON A
08-30-2004, 10:33 PM
Hello Im New To Ths Site And You Guys Seem To Be In A Similar Situation To Myself. I Really Feel Alone.i Was Diagnosed With High Plateletts January Just Gone .but The Doctors Never Say How High.ive Been Regualary Attending The Macmillan Unit But There Is No Obvious Reason For The High Plateletts.my Periods Stopped For Three Months And Then Returned But Wouldnt Stop . I Had To Have Medication ,that I Am Still Taking I Feel Genrally Unweel Tierd Etc.anyone Any Advice I Would Be Most Greatfull Sharon A
nic781
09-13-2004, 12:56 PM
Hi my name is Nicole and I was recently diagnosed with a high Platelet count. Need advice Hemotologist wont do anything she says they are not high enough. they were 448,000 2 weeks ago and now there 518,000. But Im having blurred vision headaches and muscle aches. If anyone has any ideas please post back to me here.
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[ removed ]
tooolgrl
09-13-2004, 02:02 PM
Is blurred vision, headaches and muscle pain a symptom of high platelets?? My platelet count was up over 800,000, dropped to 650,000 a few weeks back but my headaches and weird vision as well as body pain and leg pain have gotten worse. I see my doc this afternoon, glad I stopped by.
Sandra
Sandra
sapphire12112
09-19-2004, 03:44 AM
My platelets were found to be high - about 740,000 - a year ago. They have bounced around since then - as high as 824,000 and as low as 598,000... 702,000 on last test my hematologist/oncologist did last month. He has been suggesting a bone marrow test and I am finally ready to do it (partially thanks to "Harry" who posts frequently on Healthboards - thank you, Harry) - just waiting for a call from his office to schedule it. My high platelet level was found when the hospital did lab work for a hysterectomy - no idea how long it has been elevated. I was diagnosed with hypothyroidism several years ago and started medication for it when I noticed thyroid nodules... I just wonder it there could be a connection between the hypothyroidism and the high platelet count??? I do know that elevated platelets can be caused by inflammation. Cholesterol and triglycerides are good... Not that age is an issue in high platelet counts, but I am 52 years old. Any ideas - anyone?
I failed to mention that I am not having blurred vision, rarely have headaches (and if I do have headaches, they seem to be sinus type headaches), and no muscle aches. And I know that my platelets have been elevated at least a year - usually over 700,000...
I failed to mention that I am not having blurred vision, rarely have headaches (and if I do have headaches, they seem to be sinus type headaches), and no muscle aches. And I know that my platelets have been elevated at least a year - usually over 700,000...
mercedez
10-05-2004, 01:54 AM
Hi,
I don't see any posts for awhile but thought I would mention to all of you to be on top of your doctors. I'd been going to a hemotologist/oncologist for about a year and a half and she didn't do anything but blood tests. My platelet ct was between 600,000 and 750,000. She talked abt bone marrow test but we hadn't done it, then I
went to E.R. for an unrelated reason and they happened to do a C.T. scan and found
masses. did exploratory surgery and found a G.I.S.T. tumor . {gastrointestinal stromal ] Turns out that is why my platelets are high so it is not essential thrombocytosis after all. I have a real good oncologist now, but that should have been caught. Insist on tests to find out what is going on, They don't call it PRACTICING medicine for no reason.
I don't see any posts for awhile but thought I would mention to all of you to be on top of your doctors. I'd been going to a hemotologist/oncologist for about a year and a half and she didn't do anything but blood tests. My platelet ct was between 600,000 and 750,000. She talked abt bone marrow test but we hadn't done it, then I
went to E.R. for an unrelated reason and they happened to do a C.T. scan and found
masses. did exploratory surgery and found a G.I.S.T. tumor . {gastrointestinal stromal ] Turns out that is why my platelets are high so it is not essential thrombocytosis after all. I have a real good oncologist now, but that should have been caught. Insist on tests to find out what is going on, They don't call it PRACTICING medicine for no reason.
kyleeanya
04-11-2005, 12:52 AM
Hi.... I'm Hilda and new to the boards also. I see that these messages are posted in the year 2003! It is now April 2005! I don't know how you guys are doing and I hope you're ALL doing fine. Just last week, my platelet count was 766.... the week before (just 7 days) it was 635. SO in one week, it went UP really fast. I've had this lung issue going on for about one month now. BAD cold, congestion, fever, etc. So went to doctor and got antibiotics, steroids, etc. Blood work for the first time ever in my 8 years of seeing LOTS of doctors said high platelet count. I have severe spinal disease (5 surgeries), fibromyalgia, recurring viral meningitis (3 times in hospital), recurring shingles, COPD, RSD really bad which is reflex sympathetic dystrophy which is really, really BAD burning of the skin to touch.... especially face, hands and shoulder blade region. My lungs are really frightening to me. AND NOW.... this high platelet count has me really worried. I'm so frightened of cancer.... especially since my father died of lung cancer at age 36. I'm almost 50. BUT, I've been sick since the year 1996. In 1996 I had my FIRST neck surgery which turned into staph infection and I haven't been good since that time. BUT, in the year 2000, was in a head-on 55mph collision with a DRUNK driver that caused my lower back surgeries and fibromyalgia. My lung conditions started in the year 2002-2003. I am stupidly a "smoker".... and have had difficult time wanting to stop. It's difficult especially now that my nerves are TOTALLY FRYED !!!!! This high platelet count has me MORE worried than anything I've dealt with thus far. I don't know what to expect on my visit to the Hem/Onc specialist April 18th. Today is April 11, 2005. I'm so so so so worried. Does anyone have ANYTHING they can contribute to MY particular medical history? Most of what I've read - it seems - that almost EVERYONE that has high platelet count - that the doctors do NOT know WHY !??? I do not understand this. How can someone have something wrong with the blood work - and NOT have a clue as to why? It sounds to me - like this is going on all over the place ! Is it true? It also sounds to me - while browsing these messages - that MOST persons do not really have a serious cause to worry - I mean - that cancer is not the problem? Is this also true? Anyone that wants to write me - just in case I cannot FIND this place again...... and that very well MIGHT HAPPEN ... please feel free to write and make sure you title it "platelet count"...... my email address is: [ please carefully review the posting rules - no emails ].............. I REALLY WOULD APPRECIATE ANY input from anyone..... NO kidding. God bless all of you and may you be WELL and HAPPY for a long, long time. Hilda/Kylee ...... april 11, 2005
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[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]
Diane15218
04-16-2005, 07:57 PM
I have a history of Idiopathic Thrombocytopenia Purpura and had to be on Prednisone to get my platelets up..Anyway, the lowest they have been was 2K....When I was being tapered off of Prednisone I would crash like that....Ever since 2001 my platelets have been between 350K-790K...Right now I am off the Prednisone for the ITP and my counts are 398K
Diane :jester:
Diane :jester:
raissv
04-20-2005, 11:20 PM
Hi, I am new to this (boards) and am not sure how it really works (who is going to read this). I have just recently been diagnosed with Essential Thrombocytosis which means my platelets are reproducing so rapidly that my spleen is unable to destroy those I don't need. Thus a malignancy of the platelets. I am taking Hydroxyurea and find it to be very toxic. I have been organic and health minded for over 30 years and find that my genetics have undermind me. My father and his siblings all died from heart attachs which I am told is a possible result of increased platelets as well as the possiblity of having a stroke. I am writing to open a dialogue with other's who have lived or are living with this desease and I want to know if anyone has found a solution in either a natural remedy, herb, or non-toxic medication. I have minor symptoms and my count is 900,000. I started taking 500mg. of Hydroxyurea 2 X daily but have cut it down to 1 X daily due to the toxic feelings in my body, which is very petite. Any experience out there would be helpful and I will share as much as I know as I find out more. Good blessings.
Raissa
Raissa
lgoldblatt
04-21-2005, 02:15 PM
I am new here too. I was diagnosed with ET(Essential Thrombocythemia) about 8 months ago after 2 bone marrow tests. I have a count of 1.2-1.6 million platelets most of the time, but I am only 35 and my doctor suggested monitoring not medicating at this point. I have never had a bleeding or clotting problem yet so she feels we should wait on the medication since the side effects can be tough to deal with. It is a very gray area and there are lots of different opinions out there. So far I don't think I have had symptoms although I did experience a light/blurred vision a couple of times, but that may have been unrelated. What type of symptoms do you have ?
sapphire12112
04-24-2005, 01:40 AM
I have posted in this thread before. I found out that my platelets were elevated about a year and a half ago. I am still dealing with elevated platelets - thrombocythemia. I had a bone marrow test done a few months ago and also went to Emory Clinic in Atlanta in January. None of the test revealed cancer or leukemia - thank the good Lord! The doctors do not know the cause of my elevated platelets and told me that they just need to monitor me closely. I see my local hematologist every 6 to 8 weeks for platelet tests. My last platelet count a couple of weeks ago was 709,000. I feel tired most all the time. I am on medication for hypothyroidism and have been for a few years now. I was on iron tablets, but am such a procrastinator about some things... I should probably start taking them again. I just thought of something this week and was wondering if fungus in the body might have anything to do with platelets... Do any of you with elevated platelets have fungus, such as toenail or nail fungus? I have no idea if there could be a connection - I've just tried to think of something, anything, that might be contributing to my elevated platelets. I had thought they might be connected to my stomach problems (gastritis), but my gastroenterologist says "no". If anyone comes up with any health connection that is contributing to high platelets, please let the rest of us know! Oh, I almost forgot. One hematologist I saw suggested that if my platelets went over a million that I should start taking an aspirin per day, my local hematologist suggested that it wouldn't be a bad idea to take a baby aspirin per day now (but I have not been doing so - afraid it will adversely affect my stomach since I have gastritis). Best wishes to all of you. sapphire12112
bugsytjones
05-04-2005, 05:29 PM
I have a high platelet count and I was wondering the same thing about fungus or my stomach. I have swollen glands in my neck and also swollen tonsils. I have for 3 months now. I have also been very worried. I see why this is bugging you trust me. Well I hope you knowing that there is another person out there worrying with you makes you feel better. Take care.
undercoat
05-19-2005, 07:55 AM
I have high platelets and also thrush in my mouth. I have had this thrush for years as I use a steroid inhaler for asthma. Fungal infection is a common side effect of these inhalers. I have ET for 2 years now and still only take a aspirin substitute - no symptoms and I hope I never have any.
SH05
07-12-2005, 07:00 PM
Anyone out there yet to find a natural cure to slow down bone marrow? My platelet count has been climbing from 584 last year to 902 today. Bone marrow biopsy confirmed ET. Doctor prescribing Hydrea, 1 cap a day. She said in Dec 2004, they found out that Hydrea is better than Anagrelide as it has lesser side effects. Leukemia will develop in 1% of the patients. Am nrevous not to take Hydrea. will be going on vacation soon the the long flight is a concern and thus the medication. Appreciate it if anyone out there who has taken Hydrea for more a logn period of time to advise what to look out other than the monthly blood works. Bottom line, we all dont not want to take drugs and if there are herbs or natural food that can help, pls let us all know. Thanks
tabowser
01-17-2006, 10:14 PM
Hello, so I have never been ina board like this but I thought I would share my thoughts. I currently hae a MPD disorder and have since my early 20's. My platlets are averiage 1.2million and have surpassed 2 million. I have lost my spleen and have a portal vein thrombosis, but outside of that my medication keeps me under a million and this is suitable for me personally. I have taken many drugs, Intron A, Hydrea and Agryln, I am most reactive to Hydrea.
I understand your fears in learning all of this new information, but 12 years later I am doing rather well, most people don't even know I have a blood disease. I occassionally have banding on my esphogus for varicies and I have had a blood clot once in my arm NEVER in my legs. I also have had 8 pulminary embolisms, but that is the scariest thing I have been through. I know it seems frightening to learn about a blood disorder/disease, but MPD disorders have come along way and belive it or not it is rather common in people over 65. Hang in there and feel free to ask any questions I would be happy to share my thoughts.
I understand your fears in learning all of this new information, but 12 years later I am doing rather well, most people don't even know I have a blood disease. I occassionally have banding on my esphogus for varicies and I have had a blood clot once in my arm NEVER in my legs. I also have had 8 pulminary embolisms, but that is the scariest thing I have been through. I know it seems frightening to learn about a blood disorder/disease, but MPD disorders have come along way and belive it or not it is rather common in people over 65. Hang in there and feel free to ask any questions I would be happy to share my thoughts.
Inwha
01-18-2006, 02:38 AM
Hello everyone. Thanks for all the information/experiences/support. I am writing on behalf of my wife - our Hem/Onc suspects she has Essential Thrombocytosis.
During a routine check-up, our primary care physician detected elevated platlet counts (+1MM) and referred us to a hemotologist. We have just met with the hem. and have confirmed a higher than normal platlet count (850K) and are awaiting further lab results.
Our hem. has suggested a bone marrow biopsy to rule out other undesireable outcomes. I cannot begin to tell you how worried/sleepless I have been for the past week and a half. So many thoughts/anxiety going on in my head.
Just wanted to share with you all, some of the other symptoms, health issues that my wife has. While I consider her fairly healthy overall, and her other conditions not serious in nature- they have had an impact on her quality of life. Inwha, is 34 yo and has been a chronic sufferer of (1) severe migranes - though infrequent, they are truly debilitating and impact her quality of life. These days, she gets them once a month on average - with episodes lasting 3-4 hours. (Aura, nausea, vomitting, hyper-sensitivity to light/noise) - she basically needs to hibernate for several hours. (2) Moderate to severe joint and muscle pains - needs to see a therapist once in a while. (3) Moderate GI problems -anything from indigestion to diarrhea - which seems to have subsided recently.
While we await results, its great to know that there is a resource out there - as it helps those in the "dark", like myself, sleep a little better.
Robert
During a routine check-up, our primary care physician detected elevated platlet counts (+1MM) and referred us to a hemotologist. We have just met with the hem. and have confirmed a higher than normal platlet count (850K) and are awaiting further lab results.
Our hem. has suggested a bone marrow biopsy to rule out other undesireable outcomes. I cannot begin to tell you how worried/sleepless I have been for the past week and a half. So many thoughts/anxiety going on in my head.
Just wanted to share with you all, some of the other symptoms, health issues that my wife has. While I consider her fairly healthy overall, and her other conditions not serious in nature- they have had an impact on her quality of life. Inwha, is 34 yo and has been a chronic sufferer of (1) severe migranes - though infrequent, they are truly debilitating and impact her quality of life. These days, she gets them once a month on average - with episodes lasting 3-4 hours. (Aura, nausea, vomitting, hyper-sensitivity to light/noise) - she basically needs to hibernate for several hours. (2) Moderate to severe joint and muscle pains - needs to see a therapist once in a while. (3) Moderate GI problems -anything from indigestion to diarrhea - which seems to have subsided recently.
While we await results, its great to know that there is a resource out there - as it helps those in the "dark", like myself, sleep a little better.
Robert
sapphire12112
01-27-2006, 12:08 AM
I haven't posted on this thread in several months, but I did recently post on the "High Platelet Count" Thread in this forum. Last month my platelets were 987,000, three weeks later 923,000. I'm taking supplements and trying to eat foods that will keep my blood thin (and hopefully prevent clots from forming!) I'm not taking any drugs for this, and I have decided not to take aspirin on a regular basis either. I already have gastritis, so do not want to worsen that condition. The only prescription medicine I am on is for Hypothyroidism. It's important that we keep our platelets from being sticky, so they won't form clots. There's so much information on the internet. I have done so many "Google" searches... I have read that exercise can decrease platelet stickiness by 40%, so it's really important that we all exercise. I'm tired and I do have more bruising than some people, but other than that, no other really noticeable symptoms. Had a bone marrow test a little over a year ago. It was very uncomfortable, but I've had worse pain. It was good to rule out leukemia and know more what I am dealing with. I didn't know my platelets were high until late 2003, but found out later they were elevated in late '99... Have been active on another Thrombocythemia forum and found interesting information there also. Best Wishes to you all! Sapphire12112
Karenann12342
01-27-2006, 12:18 PM
Robert, Just wanted to say I have ET and have had many of your wifes problems especially the joints, muscle, migraine or aura, and gastric (I have barrets esoph. from reflux). I have no Idea how long my platlets were elevated till I changed Drs two years ago. Since I have been on med I don't have the headaches much at all. Good luck to your wife. Karen
sapphire12112
01-28-2006, 09:24 AM
Karenann and others, In addition to Thrombocythemia, I also have Barrett's Esophagus and Gastritis. I am taking Aloe Vera Juice now with honey and lemon juice. Mastic Gum is supposed to be really good about healing gastritis. I have read that Vitamin E helps keep thin the blood (to avoid clots). Sapphire12112
Karenann12342
01-29-2006, 12:12 AM
Thanks for the information, what is mastic gum?
sapphire12112
02-01-2006, 12:03 AM
I have read that Mastic gum is from a perennial shrub native to the Mediterranean region. It's supposed to help protect the stomach lining. It may heal ulcers. A gentleman by the name of Harry, who posts regularly on Heathboards, testifies to it's healing abilities. I've read that it may reduce the growth of Heliobacter pylori which is known to cause ulcers, and that it may fight bacteria and fungus in the digestive tract.
I will be having another endoscopy done late this year (October, probably). I'm hoping to find an improvement in my stomach condition! The digestive system would have to have an effect on the whole body, so I'm hoping that I can get my digestive system healed completely. Maybe then I will absorb the nutrition from my food better, then possibly my blood platelets will be affected in a positive way...
Sapphire12112
I will be having another endoscopy done late this year (October, probably). I'm hoping to find an improvement in my stomach condition! The digestive system would have to have an effect on the whole body, so I'm hoping that I can get my digestive system healed completely. Maybe then I will absorb the nutrition from my food better, then possibly my blood platelets will be affected in a positive way...
Sapphire12112
SH05
03-07-2006, 04:19 PM
Hi Saphire 12112, you asked about veg and fruit juicing. My juicer leaves the pulp/fibre out which makes drinking green veg juice easier. I was juicing everyday for 1 year but that didnt help reduce the platelet count. I still juice now but not daily.
You talked about mastic gum which I will try. I was reading a book about parasites and fungus and that 3 herbs namely black walnut, wormwood and cloves taken together can flush out all parasites in our body. I am nervous taking them cos read about the ill side effects. Anyone tried or heard about these 3 herbs?
I had H Pylori and was given antibiotics 2 years ago. I was refered to an gastrienterologist a month ago but he seemed to be having an hangover when he was talking to me. I didnt go for the suggested endoscope. Will do so until I find a more stable doc:)
Also my doctor sent my blood for the JAK2 gene mutation test and it came out positive. Doesnt help much cos there is no drugs out there to reverse it. My count is slowly climbing up. It was 484k in Sept 2005, ie with Hydrea, then doc took me off and it;s slowly climbing again. 2 weeks ago it was 782k. I guess I have to be on the dreaded Hydrea again
You talked about mastic gum which I will try. I was reading a book about parasites and fungus and that 3 herbs namely black walnut, wormwood and cloves taken together can flush out all parasites in our body. I am nervous taking them cos read about the ill side effects. Anyone tried or heard about these 3 herbs?
I had H Pylori and was given antibiotics 2 years ago. I was refered to an gastrienterologist a month ago but he seemed to be having an hangover when he was talking to me. I didnt go for the suggested endoscope. Will do so until I find a more stable doc:)
Also my doctor sent my blood for the JAK2 gene mutation test and it came out positive. Doesnt help much cos there is no drugs out there to reverse it. My count is slowly climbing up. It was 484k in Sept 2005, ie with Hydrea, then doc took me off and it;s slowly climbing again. 2 weeks ago it was 782k. I guess I have to be on the dreaded Hydrea again
newpup
03-08-2006, 12:21 AM
At what number were your platelets when you start on the Hydrea? I would really like to wait to start the meds if possible. I was given the RX today, but am still hesitant. :confused:
Thanks,
Thanks,
SH05
03-09-2006, 05:35 PM
My count was 902k but then I was due to travel long distance a week after I found out the count. I was on 1mg hydrea a day. Took if for about 3 months and then stopped. After that, it went from 484k to 575k to 619k to 726k to 782k. So it's definitely going up.
Anyone taken black walnut hull, wormwood and cloves? I wonder if this helps.
Anyone taken black walnut hull, wormwood and cloves? I wonder if this helps.
gina2020
03-10-2006, 12:47 PM
hello im a newbie to this board i have been sick for nearly a year im 31 year old,i hurt in my legs so bad and my spine burns i can hardly make it from one room to another cause im out of breath my memory is bad i go to sleep and when i wake up i cant remember the day before well i can remember some of it.my so tird that i cant hardly do anything the bone in my leg hurts so bad my head hurts all the time some days my vision is blurry and lately i stay so sick at my stomache and been throwing up at least 2 times a day.well my blood has been off my plt is always high,mcv is high mch is high,lymphcytes low,rdw high,gran#is high,rbc is always low, mono#is high, hematocrit is high,abs segs is high.ive been getting my blood checked every month. i thought my blood work might be off cause of the light stroke but they said its not that so im going to a blood doc next week they said something about doing a bone marrow test.my b-12 is always good and so is my iron so i dont know what is up any one have any ideals let me know please,oh and if i travel very far it takes my body at least 2weeks to recover. sorry this is so long :confused:
PM73
03-29-2006, 11:26 AM
I had H Pylori and was given antibiotics 2 years ago. I was refered to an gastrienterologist a month ago but he seemed to be having an hangover when he was talking to me. I didnt go for the suggested endoscope. Will do so until I find a more stable doc:)
Does anyone know if stomach problems such as H Pylori could be a cause of high platelet count???
Does anyone know if stomach problems such as H Pylori could be a cause of high platelet count???
sapphire12112
04-13-2006, 12:33 AM
I have wondered the same thing about H Pylori. I have posted this information before, so I'll try to be brief... In late 1999. one Friday at lunch I ate a beef stick. I thought it didn't taste quite right, but I'm a bit paranoid about meat anyway, so I assumed it was probably okay and ate it anyway. I had to get back to work and knew I would be hungry if I didn't eat something. The next morning I was in terrible pain. I had never been to the emergency room before (for myself), but I told my husband that I needed to go. They passed it off as a kidney infection (or bladder infection), but I had never had a kidney or bladder infection before (nor since), so I really don't believe I had one then! 4 days later I was still feeling so bad that I couldn't even lie down in bed (and was still unable to go back to work). I spoke with the nurse at the company I work for and told her my symptoms. She told me to go see a gastroenterologist - NOW, TODAY! Luckily I was actually able to see a gastroenterologist that very day. He said I had bacteria in my colon and prescribed antiobiotics to clear it up. About 2 weeks later he did a colonscopy and an endoscopy and told me I had H Pylori Bacteria, gastritis, and esophagitis. I took the treatment for the H Pylori Bacteria, then failed to follow up with my gastro doctor as I thought I was okay. Big mistake! It pays to go back pretty much as scheduled when it comes to your health. I didn't realize that he had done a complete blood count until a few years later. Come to find out, my platelets were elevated then -- near 700,000, I believe. I really do wonder if the H Pylori bacteria did start the problem with my platelets... No way to really know though, I guess.
It's late so I'll close for now.
Best Wishes,
Sapphire12112
It's late so I'll close for now.
Best Wishes,
Sapphire12112
PM73
04-13-2006, 03:16 AM
Hi again! Among the many test done to me they tested for H Pylori a little while ago and the doctor told me there was so much of it it was practically coming out of my mouth. Not a nice image but thats what he said...I have also had stomach ulcers before but never before have they tested for the H Pylori before...they only tested for it now because I asked them to! Well, I was given three different kinds of antibiotics and am to go back next week for the check-up test. I did ask my doctor now if the H Pylori could be the cause but he was extremely vague about it and I really got no answer out of him. But since the antibiotics my stomach and gastrointestinal problems have gotten only worse and my blood work did not show any lessening of platelets so I don't know either. :confused:
ShaB71
04-25-2006, 05:15 PM
Hi- I have never looked to getting information and help through a health board before. It seems for the past 6 months my platelet count has been going up and down. I was as high as 644 the end of March and now down to 550. I just went to visit a hematologist yesterday and I am awaiting the results of that blood work up. What is scaring me the most is that my WBC is not elevated it just the platelets. I did some research online (a very stupid thing to do!!!) those with elevated platelet counts may acutually have a form of cancer namely leukemia.
I also have Multiple Sclerosis which the hematolgist and my neurologist feel it has nothing to do with my meds of the MS itself. Both doctor's feel it is a :: independent situation.
If anyone has any thoughts or advice I would really appreciate it. I am quite scared. I have a 3 year old little boy and I want to be as healthy as I can for him.
Thanks,
Sharon
I also have Multiple Sclerosis which the hematolgist and my neurologist feel it has nothing to do with my meds of the MS itself. Both doctor's feel it is a :: independent situation.
If anyone has any thoughts or advice I would really appreciate it. I am quite scared. I have a 3 year old little boy and I want to be as healthy as I can for him.
Thanks,
Sharon
Tami3114
05-08-2006, 08:26 PM
Just wanted to let everyone know there is another board called "Essential Thrombocytosis (high platelets)" and we're all talkin about the same stuff. Just thought you might want to read and reply so we can all share our knowledge!