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Old 09-08-2006, 05:12 PM   #1
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julieinhawaii HB User
Re: Platelets/high

Quote:
Originally Posted by newpup
Has anyone gone without taking any meds with platelets at the million mark?
Please let me know. I have lots of concerns.
Thanks,
newpup
I am 48 year old female whoose platelet count has been 1 million and over since I took a blood test approx. 30 years ago. I have never been on medication. I keep physically active and am not over weight. Perhaps when I'm older I will take meds but not now while I feel healty. Good luck.

 
Old 09-18-2006, 07:47 PM   #2
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Re: Platelets/high

Hi everyone this is Masanii,

I also have very high blood platelets. My blood platelets are at 980.000 and they have been elevated since 1993. I have not been taking any medication. I now have a reular Primary Care Physician and a Hematologist. I still don't know what is causing the platelet count, I am awaiting the result of various tests. I feel relieved that I can log on and find out that I am not the only one that is having this problem. I have high blood pressure and I also have excruciating headaches and I hope that my Primary care and hematologist can really help me. I am 39 years old, any suggestions. Do anyone have any natural remedies to this situation.

 
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Old 09-19-2006, 05:16 PM   #3
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CuriousLady1963 HB User
Talking Re: Platelets/high

Hi Tami,

To date. I have not seen anything new on the platelet medical condition. I try to keep up with the latest research. Has your son seen the hemotologist yet, and if so ,how was he diagnosed?

You had mentioned you were never on meds for this. I had checked on the biaxin for your sinus condition and your platelets had come down. I have researched a little on the biaxin and platelets. According to what I read it had nothing to do with the platelets. How were you diagnosed with your condition? Do you have essential thrombocythaemia?

Presently, My platelets are in the 800's. I have another blood test to see if they are coming down. I am presently on a very heavy parasite program and detoxing. I will know if this has an impact on my next blood test. My Dr. mentioned that if they start to come down he will not put me on the meds. Of course, I am not telling hime what I am doing. If this does start to happen I will make a posting to let others know. My intention is of course not to go on the meds. I will stay off as long as possible. Are your platelets still down?

Appreciate hearing from you

 
Old 10-04-2006, 05:48 PM   #4
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tomatoes49 HB User
Re: high platelet count

hey i'm 27 and have been on meds for high platelets for a while
my doctor say the only reason i am on them is because i already have had a DVT
if i never had it they wouldnt think of putting me on them
they would just monitor me monthly as they do you
so just take your baby asprin and no worrys

 
Old 10-11-2006, 03:31 AM   #5
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Valerie11 HB User
Talking Re: Platelets/high

Quote:
Originally Posted by julieinhawaii
I am 48 year old female whoose platelet count has been 1 million and over since I took a blood test approx. 30 years ago. I have never been on medication. I keep physically active and am not over weight. Perhaps when I'm older I will take meds but not now while I feel healty. Good luck.

Hi I am new to this site and have had a platlet count of any where between 400-700. I've tried the medication, but I feel exhausted and I want to spend time with my grandchildren, so I am no longer taking any medication.
Does any one know if there are foods which can help, or should be avoided or any complimentary.

 
Old 10-13-2006, 12:33 PM   #6
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tomatoes49 HB User
Re: high platelet count

how is your iron count if you're a lil anemic or alot taking iron may help your count lower , ask your doctor i get these insane iron pills they arent cheap but they work and will help with the energy levels also!!

 
Old 10-15-2006, 10:14 AM   #7
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Re: high platelet count

Im 36.. When I got sick in May of this year with a severe sore throat. Got blood work done cause dr thought I had Mono. No Mono but platelets went high. Each week they got higher. It was first called reactive thrombocytosis.. (high platelets due to an underlying cause..i.e sore throat).So come end of June platelets were still going high.. up to 1.1 million .Family Dr said to take 81mg aspirin a day and I needed to see a Hematologist.Went to see her.. plateletes went down too 800 000 and some (forgot the number) ,she thought it was still my sore throat as I had it till the 2nd week of July. Told me to stay on aspririn..untill they went down but needed to have blood rechecked in 2 weeks and to see her then too. 2 weeks later they were back at 937 000 and she said too high... If it had just been my sore throat causing it then it should of been gone by now. I had chest xray and abdominal ultrasound as well just in case. Everyything looked good.. All my other numbers in my blood were good too.. Just the platelets..So on August 23 I had a bone marrow biopsy. They couldn't pinpoint anything so on Sept 27 was dianosed with Essential thrombocytosis. SHe said my iron stores were decreased in my bone marrow but that is not my ET cause. I am taking Iron pills (2x 37.5 mg a day) and for me they are cheap. I paid 2.99 for 100. Plus my 81mg aspirin which I got at Costco for 13.99 for 250. Im Canadian so my prices might be different. She siad if they went over 1.5 million then I would most likely go on hydroxy as well. I hope we never go there. I also drink green tea every day. Not sure if it helps but I read it reduces the stickiness of the platelets. So I am surprised that some people are not even taking baby aspirin or low dose aspirin daily ..just to reduce the stickiness. I know some people don't want to take asirin cause it can do other damage but I taled to 2 Drs. ,my hematologist and many pharmacist and the low dose is OK. You shouldnt take them if you have normal platelets (some people think they should take it daily to prevent stokes and such) but with high platelets its ok ...Hematologist tols me before that if my platelets went below 600 then I most likely would stop the aspirin..
But I just hope you are ok.. I hope you can get some answers.. Nothing worse then not knowing.. I hate it.. And as for my ET.. it was just the luck of the draw and most people don't know they have it. Not saying you have it ... But keep on top of your blood work.. Lots of Drs. Dont know much about stuff. My own family Dr doesnt know much about my ET.. Im her only patient she has ever seen in her 20 + years as a dr. So she has to educate herself..
Good Luck..
Keep us updated...
Kristine

 
Old 11-14-2006, 03:39 PM   #8
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Amy 333 HB User
Re: high platelet count

Hi

Would appreciate response from young females diagnosed with thrombocytosis.
I am a 27 year old female diagoset with Et 2 yrs ago. HAve been taking hyrea since then as my platelets were way over 100, 000. Now trying to get prenant and would appreciate any information regarding this condition and pregnancy. I wonder if hyrea affests the unborn child and if there are any alternatives. also have you other girls had problems during pregnancy? i have already had one miscarriage and i am so worried.
i live in a small island in Europe and i am the only person diagnosed with this condition under the age of 50. It feels so terrible having no support locally but so comforting to know that there are other people in my situation.
Thanks

 
Old 11-15-2006, 02:58 AM   #9
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undercoat HB User
Re: high platelet count

It isn't wise to try to get pregnant whilst on Hydroxyurea. You need to speak to your haematologist about it. I believe that Interferon is better at this time, but has side effects. I could direct you to another board that will give you more support for Et, but I don't think I can post the web address. Google MPD Support - there is lots of help and advice out there and I think if you want a baby you need more guidance than you are getting at present.

All the best to you and good luck!

 
Old 11-23-2006, 05:10 PM   #10
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Unreasonablewom HB User
Angry Re: high platelet count

Quote:
Originally Posted by Amy 333
Hi

Would appreciate response from young females diagnosed with thrombocytosis.
I am a 27 year old female diagoset with Et 2 yrs ago. HAve been taking hyrea since then as my platelets were way over 100, 000. Now trying to get prenant and would appreciate any information regarding this condition and pregnancy. I wonder if hyrea affests the unborn child and if there are any alternatives. also have you other girls had problems during pregnancy? i have already had one miscarriage and i am so worried.
i live in a small island in Europe and i am the only person diagnosed with this condition under the age of 50. It feels so terrible having no support locally but so comforting to know that there are other people in my situation.
Thanks
my doctor didn't know anything about it either.......and not to worry, my count is 1.4 million and i have zero symptoms and have zero treatment ........when i remember (not often) i split a regular aspirin in 4 and take a piece.......i have seen 3 blood specialists and some of them are zeolots who have insisted i undergo this, that or the other test.......i have refused until they can tell me precisely what benefit there is to me......one said my smoking caused it, so i quit........platelets kept climbing, so i started smoking again (made no difference)......i am 53 and if i had 100,000 count i'd consider myself cured!

do some internet research and keep looking for a doctor who knows the subject.......i have found that to be the hardest hurdle........i was diagnosed 10 years ago but my platelets have been climbing since the birth of my 29 year old son and nobody flagged it..........until the lab where i got a routine blood test sent an SOS message to my doctor, and she panicked, which did not help me! the last blood specialist i saw is the expert here in ottawa, ontario and she has many like me who have platelet levels through the roof and no symptoms.....she told me i will likely never need treatment nor have symptoms, some of us fall into an unexplainable category of having sky high levels that mean little in the big picture of our day to day health.........my only concern is if i have a serious accident......and nobody at the emergency room know about my disorder or what to do about it.....their ignorance on the subject will likely kill me as they won,t swiftly move into action......come to think of it i should help along and get a medical bracelet

sorry, i am an old female as opposed to the young ones you were hoping to hear from...........its mainly an older person's disorder, however, it started for me at the age of 23 - just took a few more decades to tell me - i am pretty sure i am my family doctor's only patient with this disorder and i live in a city of over 1 million

i would be very critical of any drugs suggested and any tests suggested........saying no to all of them for me just meant the doctors' who wanted them done could not "confirm" what they told me i had, i.e., ET........confirming it does not cure it, there is no cure and since i have no problems, why suggest tests and drug therapy......at 100,000 you should be laughing ...i expect mine some day to hit over 2 million......

my skimpy record so far is the following:


Feb 04 1138
Aug 04 1436
April 05 1333
Oct 2006 1370

in 2 years, they have increased by approx 200........at that rate i'll be long gone by the time someone figures out i should already have gone! a medical wonder is i

the stress of having this diagnosis has probably caused my high blood pressure which might do me in first

Last edited by Unreasonablewom; 11-23-2006 at 05:17 PM.

 
Old 11-23-2006, 05:20 PM   #11
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Unreasonablewom HB User
Re: high platelet count

what is a DVT?

 
Old 11-23-2006, 05:31 PM   #12
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Re: Platelets/high

i don't understand why everyone seems to be or have taken meds for platelets way lower than mine when i have never taken anything but half of a baby aspirin and even then, when i remember which is probably once a month

i've a feeling there are many kinds of ET or some people just do whatever their doctors suggest without demanding to know why they should and what the risk is to saying no

are doctors out there using us as guinea pigs? i don't understand why some of us are on meds, while others like me with a platelet count of 1.4 MILLION take nothing at all and likely never will no matter how ridiculously high they go..are we blaming all our headaches, muscle aches, tiredness on ET or is it possible to get a headache, sore muscles and be tired just because we sometimes get a headache, sore muscles or get tired for nothing more than lifestyle issues or a bad day? what am i missing here......? i don't understand why people with 1/10th of my platelets are on medication.........what are the doctors saying, why are they putting meds in your bodies? it seems to make no difference and i have been reading such message boards for at least 8 years, on ET

maybe, just maybe we don't fit into any medical box and they are (the doctors) pushing drugs on us???? i don't know, i just question everything and unless i get a real answer as to why i should take some drugs, i err on the side of my lifestyle is dangerous enough already.......without adding powerful drugs to an aging body (i am 53)

there is such a wide variety of medical interventions for the same blood disorder, it boggles my mind

i am probably the one person with the highest levels of platelets on this board.........and yet i take nothing and have zero symptoms...........i'd like someone to explain to me why i have ET and am fine while others are taking drugs that do not seem to help........have any of you suffered heart problems or anything else that led to the drug intervention.....or is it all precautionary measures just in case?

just very curious about all these different ways to solve an unsolvable problem for a disorder (its not a disease by the way, its a disorder) that is uncurable to begin with, unknown by most physicians and now i see new research that says it may be caused by our genes..........though it may be caused by genes that mutated after birth (whatever that means)

 
Old 11-24-2006, 05:34 AM   #13
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undercoat HB User
Re: high platelet count

I had a blood test today and my platelets are now under 600, which is brilliant and I am really really happy about it. I only take a baby aspirin every day and as far as I know, I have no symptoms. There seem to be lots of people on this board with this condition and it seems so strange that no one knows the cause of it. I too saw a very enthusiastic doctor a few months ago who wanted to put me on Hydrea - I said no because I didn't see what had changed from the previous appointment.

The only thing that I have done differently is wear a mouthguard at night - it seems to have stopped me from snoring - could this elevate platelets? Who knows but I will continue to use my mouthguard and see if they go any lower.

 
Old 11-30-2006, 04:02 AM   #14
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probole HB User
Re: high platelet count

HI. I'm new at this post.
My wife, 42 years old female, has been with ET since 1993. Her platelet count is always in the range 400-950.
Takes Anagrylin, Hydrea, Iron and now 81mg aspirin. She has a blood work every other month to check platelet count and consults her hematologist for med adjustments. She had a portal vain clot and as a consecuent needed surgery in 2000 for a portal caval vein shunt.
We want will search for other alternatives, since meds have been increasing yeay by year.
Would some one with ET and currently with meds is in the same hi platelet count, 950, is in a different pattern??
Please comment. Jorge B.

 
Old 12-10-2006, 06:54 AM   #15
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erinkate HB User
Re: high platelet count

Unreasonablewom -

My original platelet count at diagnosis was 1543000, and like you, I was completely asymptomatic. I am currently taking Interferon three times a week as well as an aspirin every day. The reson for this is that I am pregnant, and the high platelet counts make it so that the blood is too thick to cross the placenta properly, pretty much starving the baby to death.
The meds have decreased my count to 673000, and I am still not exhibiting any symptoms! It seems to be a strange disorder, where some people with counts much lower than ours have all sorts of problems, and yet we're fine!
I'm not sure whether I intend to continue with medication after the pregnancy - I don't have symptoms, but I know that a lot of people DON'T have symptoms before a heart attack or stroke, it takes them by surprise, and knowing that this condition makes me more at risk for these things, I'd rather not be taken by surprise, I'd rather be doing all I can to prevent the risk of this happening.
Of course, I'm only 26 and I wouldn't imagine my risk of heart attack is too great, but, hey!

Erin

 
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