Hiya
I was diagnosed 3 years ago with a platlet count of just over 400, i was put on aspirin, last feb 2005 was admitted to hospital with blood clots in my lung, visited hemotologist sept 2005 platelet count was 670 then, patted me on the head and i'll see you in a year sort of thing, since been on warfarin.

I read about others with aches and pains, but i also get kinda confused, and there are times when i'm freezing cold inside, and really tired and sore.

Don't go back to hemotology until this sept 2006, meanwhile they monitor whether my blood is thick or thin, every few weeks, thankyou to all who have put up notices, it's helped me, i felt really isolated thats why i've posted.

It;s really great to find this mesage board. I'm a 47 year old female who has had essential thrombocythemia since a blood test revealed it when I was twenty. My Platelet counts are always over 1 million. I have never been on medication even though the doctor keeps strongly suggesting it. What keeps me off it is that I feel fine. Part of feeling fine comes from a healthy active lifestyle. Lots of excersize to prevent the blood from clotting. I don't recommend no medicine for everyone, but so far it has worked for me. I will probably go on Hydrea or another medicine when I get older but for now I'm going with a healthy lifestyle. I would like to hear from others about their experiences with medication and no medication. Julie

I've had E.T. for about 5 years (that I know of). My platelets went down to 425 and I quit going to the dr. for 2 years...bad mistake. I went for my work physical a few months ago and found out they were in the 890 range and now I'm going to the Hemotologist once again. I had a panic attack every time I went to see her and got put on Zoloft for that, whew, my visits are a little more pleasant now, lol. I had a bone marrow biop done when first dx and none since. My doc did tell me that my life expectancy was the same as hers ( I hope she's planning on living a long time, lol) But anyway, she has me on iron and baby asprin and the platelets are staying in the 600-700 range. It is very depressing for me to know that I have this but I would find diabetes depressing also. My dr also told me that many many people have this disorder (I think 17% of the US population) but they don't know it because so many people don't get their blood checked. It's nice to read that other people have fatigue...I didn't realize that it was from the E.T. Now I have an excuse for a messy house! :bouncing: Has anyone heard of platelets being extracted? My dr. mentioned that also.

Hi Julie,

I'm 47, too, was diagnosed 2 years ago, but have recently begun taking hydroxyurea as my platelets started rising, my blood pressure started really rising, and I get headaches.
What I didn't realize until I began taking the hydra is that I was completely emotionally and physically fatigued, most likely from the high count (for me, it was 937) since this past December.

I had platelets in the 400s for years, thought it was great and never had any problems. I knew how high they were because I used to donate platelets 2 - 3 times a year. The blood center was ecstatic - they'd get two bags of platelets from me. Then, one day after donating platelets, the donor center called and told me I had a high platelet count and should consult my doctor - now it was in the 500s. After checking my count every couple of months, with no real change - the hemo told me not to come back until my internist told me to and not to take anything, no aspirin, no iron, nothing.

ON the hydra, my count is down into the 600s, and I am feeling better every day!

Hi, all. I was dx with ET last October, but along with ET the hemotologist also said that my platelets weren't clotting properly - so in spite of elevated platelets I could possibly bleed out from a major cut - or alternatively get a blood clot! He tried anegrylide but I couldn't tolerate it, stomach-wise, so now I'm on Hydroxy, 500 mg. One day I take 3, the next day I take 2. But the longer I take it, the sicker I feel. The last test showed that my plates were down to 519 from 670, so that's good, but my red blood count was below normal and my RBCells were very enlarged. I think that the hydroxy is doing this and I'm getting more and more exhausted. I asked the nurse if I was anemic and she said my iron and hemoglobin were normal so I wan't anemic. I asked her didn't a low RBC for any reason mean anemia and she cut me off. I have another appt. with the hemotologist next week. I'm seriously thinking of going off meds for this altogether - maybe my body knows it's platelets aren't clotting properly and that's why it's making too many of them. I can't stand this exhaustion, I sleep 12 hours a day and can't even clean the house but before I started the hydroxy I was fine. Anybody else feel the cure is worse than the disease?

HI. I just joined in today. I was diagnosed with ET two weeks ago. I was actually seeing the doctor about my diabetes and some rashes i had on my thighs which I had for almost a month. I usually get very itchy when my sugar was high so it was really a surprised when I was referred to a hematologist because of my high platelet count which was about 1.9 m. The same day i went to the doctor, she suggested a bone marrow biopsy since my platelet went up to 2 m. The next time i went i received the bad news about having ET. In truth i am still overwhelmed by this diagnosis. Everything was a blur and it is only now that i am trying to fully understand this condition. I am very happy to know that there are a lot of us who have led long and productive lives. I was really scared because she mentioned that because of my age 28, i only have around a 10 year time limit. They want to do another test in a few months time for a second opinion and i am hoping that it will not lead to anything serious. I just moved here last Sept. from another country. I left all my family and friends back home. I have no close relatives living anywhere here. I dont live alone, i have a very close friend staying with me but still there are times when i feel so alone. I hope to read more of your experiences because it gives me hope about my future.

hi ann
i know what you mean. i do have friends i can talk too but still its different when you can talk to someone sharing the same experience as you are. i was only diagnosed 2 weeks ago. I am still confused and scared of everything thats happening to me. I feel that i will not be able to do the things that i should be doing. I am young and have never been really sick in my entire life. I thought that having diabetes 2 years ago was the worst thing that could happen to me. And now this. This site opened my eyes that there is hope for the future and you should not lose hope too. I hope your feeling much better.

Julie,
The earliest report of my platelets being elevated for me was when I was almost 48. I am now 54. The highest my platelets have been, that I am aware of, was 987,000 last December. They were, I believe, 818,000 last month. I am on no medication for this, but I do take vitamins and supplements. I take Vitamin E and garlic to keep my blood from clotting too easily, I take a multi-vitamin, Vitamin C, a digestive enzyme (since I have had digestive problems), and Trace minerals. I have read about red wine being very healthy, so I drank a glass of red wine almost every evening for over 3 months. When my last platelet count had gone up from 700,000 in early April to 818,000 in mid-May, I was a disappointed and have not been drinking red wine as faithfully. Although what may have caused my platelets to be higher last month was the sinus problems I have been dealing with lately... Have had my usual glass of red wine the past couple of evenings with my meal. I know that exercise is very, very important, especially for us with ET, but I have a difficult time incorporating it into my schedule. I have my rebounder in my bedroom (mini-trampoline) and I need to start using it again daily. (I have been to Hawaii several times -- years ago -- Oahu, Kauai, and the Big Island of Hawaii, and love it! I especially like the Big Island, Hilo and Waimea especially. Best Wishes,
Sapphire12112

I am a 42 male and was diagnosed with Essential Thrombocytosis 2 years ago during some routine pre-admission testing. I saw a hematologist who performed a bone marrow test and informed me that my platelet count was at 623. He put me on Agrylin which brought my platelet count down to 195 after only a few months of use. Last year he took me off agrylin and put me on a Hydrea due to a study found in the New England Journal of Medicine which found that the use of Agrylin led to higher incidents of Lukemia in later years. I am currently taking four 500 mg capsules of Hydrea daily, which has brought my Platelet count down to 400. I also take a baby aspirin a day. I have also went for two second opinions about taking the medication including the world renowned Dr. Schaffer from the University of Pennsylvania Hospital and they all agreed that I should remain on the Hydrea. What I find interesting is that many of the posts on this site are from people with platelet counts well over a million (much more then my all time high of 623)and they are not on medication. Is it possible that I have seen the only three doctors in the world who belivieve in bringing the platelet count down with Hydrea and Agrylin?? I have been warned that without these medications my risk for a heart attack and stroke goes way up. I will be interested in hearing your thoughts. :confused:

hi gen 27 i to live in maryland my platelet count is over 1m. the doctor said i was too young now he suggest meds . i already take asprin daily. lets talk please!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !.
DONNAX1

My platelet count was in the low 500s when my former hemotologist told me I didn't have to go back until my internist sent me back. It went up into the 600s and she told me to go back, but I didn't and 4 months later I went to her for a routine visit and my count was in the 900s, I was feeling miserable - totally wiped out, had gotten sick three or four times in the 4 months. The internist put me on hydroxyurea due to the high count, killer headache, and my blood pressure was way up. I went to a new hemotologist (the former one retired) two weeks later and my count was back down in the 600s and I was feeling better. He told me that if the internist hadn't put me on hydra he probably wouldn't have, but since she did and since my count was down so much and I was feeling better with no apparent side effects, he was keeping me on it, but would monitor carefully and adjust to the optimum amount for me - currently I'm on 1000 mg (500 mg 2 x a day). My next visit had my count slightly elevated, so he kept it the same. I go back at the end of this week, and if the way I feel has anything to do with it, I think my count is way down.

Anyway, everyone is effected differently by platelet counts. Some people function fine at higher counts, others don't. Having certain "symptoms" brings doctors to start prescribing at lower counts, too - headaches, high blood pressure are two that pop out of my memory.

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My platelets had been elevated for at least 2 years (maybe longer, but that's how long ago I had my first blood test). Anyway, my platelets went from from 450,000 to just over 700,000 in the last 24 months that I've been getting my blood tested. So just like all of ya'll, I searched the internet to no avail, then I searched the bookstores here in Dallas, TX until I stumbled across a passage in an alternative heath book that suggested taking IRON SUPPLEMENTS. So I went to the store and bought a bottle of 65mg of Ferrous Sulfate (Iron) and started taking it daily and having a blood test every 2 weeks. And amazingly, my platelet count started dropping. Currently, (after only 2 months) my platelet count is down to 401,000.

The only adverse effects to taking an IRON SUPPLEMENT are the following minor inconveniences (which I've discovered are common, but harmless)----- 1. Your bowel movements will turn BLACK (normal effect) and 2. Iron supplements affect your intestinal system like a mild laxative. (but now that I've reduced my platelet count to 401,000 I've reduced my daily intake to 30 mg per day and am not having any laxative-like effects.)
(Also, it wouldn't hurt to try taking a good multi-vitamin/multi-mineral in case your deficient in other areas too.)

If anyone out there gives this a try, please post on here to let me & others know whether it worked for you or not.

Thanks. I hope this helps someone.

Please read and follow the posting rules.

I am 26 and found out i have a high platelet count a month ago. it ranges from 1.9 mil to 2.9 mil. currently I am not on any medication because of my age, and I have a low von willibron protein so that makes my blood thinner. has anyone tried alternative therapy? I heard that adjusting the ph could help. the side effects of the fda approved meds make me cringe and I dont really want to ever take them. finding out was a shock. I found out on a random blood test and this has been the craziest month of my life with all the other "rule out" tests. I also have had the weirdest headaches for the last few months. anyone else have that symptom? my head is sensitive to the touch also. thanks.

Hi there, just finished reading your experience with the Biomeridian Technology.I am looking into this,and presently there is a seminar coming to my area on july 22,23.Can you answer the following questions for me?
l. When first diagnosed with ET what were your levels?
2. When you started your detox program you stated you went off your meds
whichwas dangerous of course.amd started your program.
3. How long did you detox?
4. Supplements were taken and are they still being taken?
5. Understand you are presently off all meds. If that is so, this is wonderful
news.
I am just starting out in this dept. Had scan,upper GI.barium enema, all negative. I am changing hemo dr. He changed his mind on the bone marrow.
All my research indicated it should be done to do elimination etc,.
I am doing lots of research, needless to say, going into lots of databases.
What you have said on your program sound very promising. To date, there is no other alternatives. Please lets hear from you and how you are doing....:)

Hello, just read your message. I'm new to this board. In doing all my research on this ET, if your levels are that high you definitely shoud be on meds to avoid complication of a blood clot and having a stroke.In the mean time I do the following to keep the platets slippery.I take 3 fish oil capules daily, 1 Vit E 400 I..U. and 3 Kyolic garlic capules daily. This keeps them from sticking together and preventing further complications. Stay tuned to the board and read what others are doing. Do lots of research. Stay well and keep us informed. Good luck.:wave: :wave:

Hi can someone on here let me know if Thrombophillia Is the same as Thrombocythemia or Thrombocytosis. I do have a high platlet count I always have even when I was 20 I am now 41 I am having this blood test done and it said Thrombophilla screen. My dear mum had blood clots on her lungs so I said to my doctor i was worried that is why she is doing this test I do have a underactive thyroid and that not nice ???
Many Thanks ...Mandy

This will be a long one.

I'm 30 just this year, although this disease is primarily listed for people in older age groups, I see a lot of people my age or around on these forums. I was found to have high platelets two or so months ago. They started at 678 went down a little, then up to 703k. In a few days I will be getting my bone marrow results and latest platelet count. Very depressing indeed, emo- tionally cofusing I suppose. Unfortunatley I feel very little comfort on this subject from the medical field. Like many I discovered this disorder through a doctors visit, mine for dizziness, slight nausea, ringing in ears and vision problems. Found my blood pressure at 137/90. Doctor perscribed Atenolol which brought my bp down and made all of the above except for ringing of ears to go away. As for that, life is great. Of course it wasn't until a few days later that we got the results of the platelets being up. My Hem. said that the ear thing was probaly unrelated, but I found it listed on a few sites online. Hmmm... If you have dizziness or vision problems maybe persue blood pressure medicine. As most of you have read, I am not very impressed or interested in the available medication. Very interested though in alternative medicines, exercise, and general health. The iron thing I might persue (my iron levels seem fine.) Of cousre I will discuss all with my Hem. first. At this time though I don't have too much faith with the Hem. No fualt to them, but they don't seem to know a whole lot, other than what they can eliminate as problems. As for me, I don't seem to have any complications at my levels of platelets. Other than the knowledge of, I would think there was nothing wrong. It does seem that know two people have the same complications at the same levels of platelets, this makes things kind of hard. The one thing I don't see are any studies on us in regards to age, lifestyle, family history, weight, haircolor, whatever.... Communication on this board is more comforting to me than what the docs. might say. Its nice to see a few people with 15 to 20 years of this under their belts....but I'd like to here again from some of the original posters. Where have you gone?

Re thrombophillia: I think this is the test to see if you have the genetic marker predisposing you to the high platelets. This genetic link is a fairly recent discovery and is uncommon, but the doctors are starting to test for it. I had the test, no big deal. I don't know what they do with the info...stats maybe.

I have had ET for about 5 years now. Platelet count has crept up from around 500 to 1.2m before stablizing without meds. My previous specialist let me not medicate (I was worried about side effects as I was an Air Traffic Controller) and I was asymptomatic. Her cut-off before meds was 1.5 m. I have since moved and my new specialist insisted on meds (low dose of Hydroxurea daily and baby asprin twice a week). My count is a bit below 1.0 m.

Has anyone heard of "secondary erythromelalgia". It can be related to ET and involves itching, burning, redness of extremities (lower more common). I said I was asymptomatic but I just discovered this condition on a website (google it) and I am positive that is what I had in my toes two summers ago, especially when I wore slip on shoes with toes. I spoke to my regular doc and hemo doc about the pain I would get in my toes but they didn't relate it to the platelets. After reading about this "erythromelagia" on the web, I am positive that this is what I had. Incidently, I haven't had a problem this summer with the toe pain.

I hadn't heard of erythromelalgia until recently when someone told me to check into it because I had "burning" sensations in my lower legs - but no itching, pain or redness. Oddly, when I mentioned the burning to both my internist and my hem about it, both of them asked about pain, itching and redness and had no idea what my problem was when I said I had none of those - so, my guess is they were considering erythromelalgia. From what I have been reading, it seems to be more indicative of PV, than ET.
I've learned, too, that the burning sensation is a symptom of ET (like a very strong flush feeling), from a doctor I've read on line.

Maybe you haven't had the problem since your count is a little lower?
I haven't had the burning since my count is back down in the low 400s - had gone up into the 900s (highest I've known my count to be).

My internist and then my hem both suggested I try the iron - first order of "attack". My iron levels were (and are) borderline okay (low side), but iron supplements did nothing (other than give me diarrhea - opposite of what they do for everyone else). I even tried a prescription iron supplement - still upset my stomach and did nothing for my platelet levels.
I remember reading somewhere that tinnitis (SP? ringing in the ears) is definitely a symptom of platelet level, as well as vision problems and headaches and silent migraines.
I have blood pressure problems (internist also has me on Atenolol) and have suffered from headaches my entire life - but reduced to just a few zingers a year since I cut out most processed wheat products, and hate taking medication - went to the doctor about 3 times before I was 17 - but tried the hydroxyurea on my docs suggestion and felt so much better - I actually feel back to normal now - had been so exhausted the idea of taking a shower would make me want to go back to bed for 3 hours - not to sleep - just to do what I had energy for - nothing. I pray that none of the nasty side effects comes out in the long run, but, in the meantime, I can live again and enjoy my life.

You are right, though - the doctors are learning with us. So many people I speak to have doctors who have never before had a patient with ET (or one of the other MPDs).

I have the ET and get the itching and redness. Before I was diagnosed I had a Dr. tell me it was renaulds. One of my fingers were actually purple for about a week. The fingers burned and the hand, wrist and arm ached. It was a mystery to my former doctor. I haven't had the purple and painful fingers and the weird heart rhythm since I have been on the baby aspirin and agrilyn. I was given a low dose of prednisone to take only a week out of a month if I needed it for the itching. The Hemo Dr. said something about histamines in the blood from the condition of et. Something on the order of that anyway. I just thought I would add some info . Take care all, Karen

Hi all, I am very new to this board.

I was diagnosed with a DVT in March 2006. Researching on this website I have come across all of your postings. I am very courious about ET and how you went about finding out that you had this and to see if maybe it has anything to do with my DVT or any of the other symptoms I am having.

Symptoms include:

Headache (goes away sometimes with Aleave)
Muscle aches (sometimes generalized in my legs and arms, sometimes whole body like when you are sick)
Fever (not all the time, 100 to 99.9) goes away after taking Aleave
Fatigue ( Somedays are better than others, somedays I am not tired at all and feel like I can stay awake for ever)
No energy (When I do have energy I feel I over excert myself)

My dr has not tested my platlets however, I will get him to if I have the info I need to build my case for him.

Hi all, I am very new to this board.

I was diagnosed with a DVT in March 2006. Researching on this website I have come across all of your postings. I am very courious about ET and how you went about finding out that you had this and to see if maybe it has anything to do with my DVT or any of the other symptoms I am having.

Symptoms include:

Headache (goes away sometimes with Aleave)
Muscle aches (sometimes generalized in my legs and arms, sometimes whole body like when you are sick)
Fever (not all the time, 100 to 99.9) goes away after taking Aleave
Fatigue ( Somedays are better than others, somedays I am not tired at all and feel like I can stay awake for ever)
No energy (When I do have energy I feel I over excert myself)

My dr has not tested my platlets however, I will get him to if I have the info I need to build my case for him.

the symptoms you list - other than the fever - are all common symptoms of ET, but the primary reason to suspect ET is high platelets - anything over 400-450 (that is 400,000 - 450,000) is considered high. It is a blood test that is used to determine your platelet count, but it isn't an "automatic" test.