Hi, I'm new to the board today. I'm searching for information on high blood platelet count. Last week when I was in for my yearly checkup my doctor told me that my platelet count has been elevated for over a year. 6 months ago it was 490,000. Last week 424,000. I am being sent to a hematologist. I'm a bit concerned about this, because she mentioned problem with bone marrow as one possible cause. This all sounds a little scarey to me and I'm wondering if anyone else has delt with this and what was your experience? I'm a 56 year old female with history of thyroid cancer. I have high blood pressure which is controlled. And I've had a stroke that didn't do any permanent damage. I take a 81mg asprin every day.
Thanks for responding.

I should have added that the glands in my neck have been swollen for over a year with no obvious reason.

My platlet counts are always high due to iron deficiency (currently almost 571,000.) There a many reasons for high platlets. Hopefully you'll get an answer from the hematologist but maybe not. I'm finally coming to understand that sometimes there isn't an answer. I've been seeing a hematologist for almost 3 years and he STILL doesn't know why I'm so iron deficient!! BUT, in the grand scheme of things it's just a pain in the ARM. I get IV iron to bring my levels up. The first time another patient asked me why I still had hair it put a whole LOT of things instantly into perpspective!!!

Thanks to both of you for your responses. My appointment with the specialist is tomorrow and I'm curious to see what he has to say. Regarding the elevated blood platelets, I'm beginning to wonder if the constant pain that I am in from arthritis wouldn't thicken my blood? It seems to me that I heard somewhere that the body will thicken our blood if we are in pain, as tho we have been injured. I'm not sure about that tho.

Hi , I am new to this board.But wanted to respond to High blood platelets.
i am female age 69.My platelets got up to 850.
had to have bone marrow Test so had to go on hydroxyurea been two months am doing fine down to 395. You will be ok Barb. Would like to hear from you

------------------

I'm beginning to wonder if the constant pain that I am in from arthritis wouldn't thicken my blood? It seems to me that I heard somewhere that the body will thicken our blood if we are in pain, as tho we have been injured. I'm not sure about that tho.
It's actually the other way around, most probably. You may have had arthritis before, I'm not sure, but this essential thrombocythemia you have may have actually exacerbated the problem. Arthritis doesn't make your blood any "thicker" or "thinner"; however, elevated platelets can make your blood thicker which can cause pain in your joints...also, the elevated platelets mean that you are at an increased risk of forming blood clots, and tiny microscopic clots may also be making your arthritis worse.

Hi, Wanted to ask if any of you have had a rash .And just wanted to add that my bones hurt to.would love to hear from any of you. It is so good to have this board.Thanks

Typically having a high platelet count can increase chances of forming blood clots. There are such medications as Plavix that lower the number of platelets in our bloodstream. You might want to mention this to your doc.

Lots of doctors misdiagnosis patients as having ET when they really have PV. One of the best docs out there to explain it is named Spivak at Johns Hopkins. Do a web search for his articles. Bone pain is common. Itching, redness, rash are more common in PV or Systemic Mastocytosis which are also myeloproliferative disease. Both of these conditions often have high platelet counts and that is why they are misdiagnosed.

The only "blood thinner" used for myeloproliferative disorders is aspirin. Those of us without a medical background would think otherwise but this is not the case. In fact there is no evidence even that aspirin will prevent a blood clot in myeloproliferative disease. It is given to treat microvascular complications such as Raynaud's (blue toes and fingers) and erythromelalgia (red burning hands and feet). There are many different chemical reactions that cause platelets to clump and the various blood thinners such as coumadin, plavix and aspirin all target different mechanisms. Aspirin is the only one that provides any benefit for this particular disease. That is not to say that someone with a myeloproliferative disease may not have another type of circulation problem in addition to the mpd. These drugs may help with those other conditions.

Plavix does not reduce platelet counts, neither does aspirin, neither does coumadin, neither does heparin, neither does any "blood thinner." Period. Look it up. Educate yourselves.

There are drugs that do and they are all chemotherapy type drugs. Hydrea is probably the most common for ET.

Barb, you have had a stroke already and have some other issues. You need expert diagnosis and treatment. There are excellent specialists at the Hutch. Please don't make the mistake of sticking with a doctor because you like him/her. Many people go to experts once a year and are taken care of in between by their local doctor.

Elevated platelets are a common finding in Rheumatoid arthritis. They are connected. Platelets are involved in inflammation.

If you have anemia and your doctor does not know why it is time to get a new doctor. Bet you have a nice big black mark on your butt. It goes away. Mine did.
You live in NJ. Dr. Richard Silver, Cornell in NYC, is in the top 5.

To all, please join the ACOR site. Your best help is learning as much as you can so you can make good choices. Don't assume doctors know best. Many don't.

I was diagnosed with Essential Thrombocytosis in April. My platelets were 745,000. I've been on medication since then. Can't find a cause. One week they will be up and one week they will be down. Can't find a happy medium. Last week I was hospitalized for four days because my right hand went numb. They did every test they could think of and didn't find anything other than the high platelets. Told me I had TIA's. It is scary. I'm thinking about going to Mayo Clinic for a work up. Hang in there. Get your blood results and keep track of them. Good Luck. Joan

Hi
I also have a problem with high platelets. I received a test from my regular Doctor and it showed high platelets and high white blood cells so he sent me to a hemotologist and the platelets were high again 540,000 but the white blood cells were back in the normal range he took another test 2 weeks later that showed my platelets at 485,000 and white blood cells high again at 14.5. I am also Iron deficient and platelets didn't go down after taking iron. The hemotologist did a bone marrow biopsy. I am really scared about the results. I can't help but wonder if it could be nothing or if I really have something to worry about. Can someone tell me if I should definitely expect it to be some kind of cancer? I don't want to worry for no reason and yet I can't help but worry about it all the time. I also can't help but wonder if my platelets would be much higher if I wasn't taking so much Excedrin all the time for tension headaches if asprin brings the levels down. I get a headache any where from 1 to 6 times a week and have to take 3 excedrins to get rid of it. Occationally even that doesn't work. My Doctor said I have to wait 2 weeks for my results but the waiting is driving me nuts because I am so worried. I'd rather know something than nothing at all. Even if it is bad news.

I can understand that you are concerned. I was terrified that I had cancer. Hemotalogist says no. Did he give you medication? I'm taking hydrea. They are finally coming down. I was on agrylin but caused liver problems. Be sure to watch your test results. I had to tell the hemotalogist my liver tests were going up. Now they watch them. They are still high and have to go to a gastroentrologist next week. I was very healthy until this hit me. Now I wonder. Try not to think about it all the time. I'm there with you. J.

J
Thank you so much for responding. It is nice to hear that there are other prognosis that aren't cancerous. They havn't given me any medications yet, except the iron. I guess they're waiting for the biopsy results. I'll try not to worry so much. I have to go back on Sept. 16 to find out the test results. What kind of liver problems are you having? Do you have symptoms or is it just showing up in tests? I hope everything works out well for you and that your test get back to normal.
Thanks again,
Angela

Hi Barb, I also have high platelts 685. Dr says once they hit 700 I have to go on medication to slow the bone marrow down. I have Polycythemia Rubra Vera. At least they say I do, but I have no symptoms. O well Dr knows best I guess

Hi all,
I'm new to this healthboard, but I wanted to first thank you all for the information you have posted. At least I don't feel like I'm the only person in the world with a very elevated platelet count. I hope the information that I've found will be helpful to you. My brief background is this...I broke my arm on 12/25/02 and it never healed and it was decided that I needed to have a bone graft with a plate and screws to mend it. On 9/17/03 I had my pre op bloodwork done for surgery and my platelets were 1,002! (believe that). My doc was not alarmed because of the broken arm situation. My surgeon was a little worried, but didn't postpone the surgery. On 10/15/03 I went back and had the bloodwork done again and this time it was 1,290. I almost fell off the table! Now my doc was worried, because the break was fixed and what she thought was the reason for the elevation now could not be. I am otherwise, a healthy, 35 YO woman and this just didn't make sense to her as she has never known too many illnesses to "mask" themselves this well. While sitting and talking about the surgery, I told her that I stopped taking the pain medication the surgeon had prescribed and was taking Advil instead as it seemed to relieve the pain I had and did not make me sick. I was taking the max (8 a day). She was able to look online and found that Advil and Motrin are from the same family and Motrin, if taken in frequently over a long period of time, will elevate your platelets. What a relief! She did gave me Hydrea and I'll have my blood work done in 3 weeks. I still have an appointment to see an Oncologist to be on the safe side. I will let you know what we find out. Advil and Motrin are now off my list of purchases at the local drug store.

Casey Belle-or anyone else. What is the ACOR site? I have ET and am very interested in learning anything I can. Currently I continue to be stable with the help of agrylin. Diagnosed 3 1/2 years ago. Any help is appreciated.

[This message has been edited by sjd (edited 10-24-2003).]

I would have thought that being a Type 1 diabetic on insulin since I was 12 years old, 44 years ago would be enough of a burden for one life...but alas, three years ago a routine blood test and an 'incident' which my doc suspects was a mini-stroke, picked up the elevated platelets and the bone marrow biopsy confirmed the polycythemia diagnosis. In New Zealand, agrylin is not available. I've been on Hydrea now for three years and my platelerts which were opver 1000 got to as low as the mid 600s, but they are back up...950 as of today's venesection [bleeding] and test. I have an appoitment with a Haematologist in Wellington on Tuesday next week, and I'll ask if Agrylin can be obtained by any means in this country.
I'm very keen to hear if anyone here is on Agrylin and what the side effects might be. I know hydroxyurea is a rather brutal way to lower platelets, like using a shotgun when a rifle would do. I read everything on-line i could when first diagnosed, then just got on living and getting the regular bleedings and watching the blood test but now that it looks to be peaking in the dangerous zone I'm worried.

Hello OYVAY- I have been on agrylin since being diagnosed with ET 31/2 years ago. My highest reading was 960 and with 3 agrylin (.5mg) daily I have good readings around 450. No side effects other than slight heart palpatations on very rare occasions. Slight gas problems. But not to bothersome. I have alot of joint disconfort but am not sure it is just advancing age. I have NO headaches now, something I was plagued with for years. Agrylin is however very expensive. I hope you have insurence. I have a posting under "Anyone using Agrylin" I have never taken many medications so get concerned what agrylin might be doing to my body in other ways but continue to be MORE concerned what the high platelets might do if unchecked. hOPE THIS HELPS YOU.

Oyvay-- do I understand you correctly??? You have bleedings. I thought that was a treatment for high red blood cells not platelets. Tell me more. Also what are the side effects of Hydroxyurea? How is it administered and how often. I recently lost my insurance coverage so the cost of the agrylin is worrying me. Would appreciate info on other treatments.

Thanks SJD in Colorado

:bouncing: Hi I am new to this board but was very excited to see some people with the same disease as I have. I found out about this disease after having a car wreak and my blood pressure was very high and then did not go down even after being on medication for several months.After a blood test it showed my HCT at 61 and HGL 21. They sent me to a hemotoligst who started me on phylbots once a week. After 5 weeks my HCT was down to 43 which is good, but now my white blood count is rising along with my platlets. This is the scary part.Ive heard so much about the meds for this it really makes me nervous.
Thank you for your time. I would love to hear anyone elses story.
Jammin MOm

[QUOTE=Jammin Mom- There seem to be so many variables and alot of unknowns to these disorders. Try not to worry until you get more answers. Make sure you have a good hematologist you have confidence in. The entry under blood disorders titled " MPD myeloproliferative diaorders" entered my sjniick has alot of good information on it also. Sharing really helps. Best of health to you.

Anyone have any recent experience using PIPOBROMAN instead of hydroxyurea?

Agrylin is not available in New Zealand, so hydroxyurea is used exlusively. Insurance is not an issue as we still have an excellent public health service and i don't pay more than $3 for a three month supply of ANY medicine on the subsidised list.

I've read that agrylin has bad side effects on the liver. You can't live long or well without a healthy liver so that would be a concern.

i've found reference to another drug PIPOBROMAN for reducing platlets and red cells generally. It was gazetted in NZ three years ago. I've asked a hematologist to find out if it can be prescribed. Good results and no side effects reported.

My platelet count was almost at 1000 so they've doubled my hydroxyura to one gram per day.

I have never heard of pipobroman but will ask my hematologist when I see him in Dec. I have regular testing which includes the liver profile and I have not had any problems as of yet taking agrylin. It is my understanding that it is much easier on you than hydroxurea but I amy be wrong. New Zealand must have a great insurance program. What are the side effects you experience on hydroxurea? Who makes the pipobroman?? I would like to know more. The cost of agrylin is over $600.00 per month.

I have never heard of pipobroman but will ask my hematologist when I see him in Dec. I have regular testing which includes the liver profile and I have not had any problems as of yet taking agrylin. It is my understanding that it is much easier on you than hydroxurea but I amy be wrong. New Zealand must have a great insurance program. What are the side effects you experience on hydroxurea? Who makes the pipobroman?? I would like to know more. The cost of agrylin is over $600.00 per month.


My coverage is not insurance' It is my entitlement as a resident of this country...not unlike the Canadian system. That you're paying $US 600 a month staggers me! So much for 'free enterprise' and a caring society.

I found pipobroman on the www. just google it with polycythemia. Hydroxyurea is cheap. when we get our drugs the actual cost is shown even though we only pay $3 for a three month supply, regardless of the actual cost. This only applies to drugs 'on the subsidised list'.

I can't say there are any side effects from Hydroxyurea . I remember I felt bad getting used to it, and have felt similarly since the dose was doubled to 1 gram a day (2 X 500 mg Caps)

Good to hear you are okay on Agrylin.

wouldn't it be great if this pipobroman was a better drug? Let me know what you find. I'm going to meanwhile persue it here.

Forgot to add.. my iron was low, so I tried every iron tablet I could until I got theiron coiunts back into the normal range. The hematologist told me WRONG. Its better for the PRV for the iuron to be low...and getting it higher would be counterproductive. So I've stopped the iron [ferrous fumerate]

Your entitlement on medications sounds wonderful. Drug companies and insurance companies have to much power here in the US but thats what we deal with for now anyway. My iron levels have remained normal and I have only elevated platelets. (red and white cells normal) I will research the pipobroman and share anything I learn. Thank You for your reply it helps to be in touch with someone with similar problems. Take Care

Oyvay___ Have you learned anything more about pipobroman? From what I have read it does not seem to be used here in the US much for platelet reduction? I would like to know more. My appointment with my hematologist was moved to January but will be sure to ask him about it then.

see my reply on the polycythemia thread on this board
Ron

I had a great deal of problem with itching. Especially after a shower. Just recently my doctor asked me to start taking asprin on a daily basis. I take 500mg per day. I am very glad to say that this gave me almost immediate (within a day) relief from itching.

Anyone else have this situation?

Hi,
I'm new to this thread concerning High Platelet Count. I recently had blood work done and was told my results were fine. To be sure, I asked the doctor's office to fax me a copy of my blood test results. I discovered three items were "out of range." Why would she tell me everything was normal? My BUN/Creatine was low (6.4), LDL Cholesterol was high (136) and my Platelet Count high (417,000). My question is: Should I be worried that my platelet count came in at 417,000 (that's 17,000 above the norm)? Or am I just being a little paranoid?

I would keep an eye on your platelets but not worry them at this time. It was not long ago that 450k was considered in the normal range. (2001) Follow up with another cbc in a few months. My platelets were 970k before there was any notice paid by my doctor. Platelets naturally fluctuate from week to week but usually not by much. Just my opinion but hope it helps.

Barb - I found out last Oct. when I had a hysterectomy that my blood platelets were, I believe, 761,000. Over the months they have gone a little higher and a little lower. Last month, 711,000. Had tooth infection/root canal in Dec. & thought that might be the answer (as doctor said infection can elevate platelets). Saw Dr. yesterday and should get results Monday. Tested negative for Rheumatoid factor. I have hypothyroidism - diagnosed about 5 or 6 years ago - thyroid nodules 3 years ago which motivated me to start medication (100 mcg Synthroid). Having headaches almost daily on upper left side of head (possibly sinus problems, but told Dr.). Does anyone else feel that their veins hurt from time to time? I am a 52 year old white female. I just found this site tonight and am so thankful!!! After almost 6 months we still do not know the cause. If it goes much higher he will do bone marrow test. Yesterday Dr. prescribed 325 mg. iron 2 or 3 times a day. I wish each of you well in controlling this problem. sapphire12112

I meant to post my abnormal blood test results from March.
High: Red Blood Cell Count 5.86 (range 3.80-5.10); Hematocrit 45.5 (range 35.0-45.0); RDW 17.1 (range 11.0-15.0); and of course platelets 711,000.

Low: Carbon Dioxide 20 (range 21-33); MCV 77.6 (range 80.0-100.0); MCH 25.8 (range 27.0-33.0).

My gynecologist told me to take an aspirin a day (due to the high platelet count) but my hematologist didn't seem to think it was necessary.

My mother had Alzheimer's. Does anyone know if Alzheimer's could be linked to a high platelet count? My mother's dad and 3 of her siblings had forms of dementia - developing symptoms when they were probably in their mid-70s. I wonder if the high platelet count could prevent enough oxygen from getting to the brain...

Mom has suffered with high platelet count for years (10+). She used to take Hydrea daily to keep her counts down, but in the past 6 years she has been dealing with chemotherapy for Ovarian Cancer....which totally throws off her counts. She sees a Hem/Onc weekly and has her dosage adjusted appropriately.

Regards,
Michael Amisano

Came up with High Platelets from blood work.....595. Since the initial test, it has fluctuated in the middle to high 400's. Have seen two hematologists. They recommended chest X ray (Normal except slight residual damage from having smoked 30 years ago, colonoscopy (normal) and abdominal ultra scan (normal except kidney cyst). Was advised to take 1 reg. aspirin per day.
I am monitoring the platelet count monthly and would not be too worried about it except generally I do not feel well...rash once in a while, not sleeping real well, and burning eyes. Am I missing something here? :confused:

My blood platelets have been slowly climbing, last week at 800, I am being referred to a hematologist and my GP told me to start aspirin regimen, I have been diagnosed with collagenous colitis, they believe that is where the problem lies, it is still scary to me. I have horrible musculo-skeletal pain and headaches, constant nausea, but I am told it is all related to the IBD. Who knows, I am being treated for iritis also. I have to have repeat labs this coming week and hopefully my count will have lowered. Does anyone know if there are any symptoms related to a high platelet count?

Thanks
Sandra

i was scheduled to have my tosils out this thurs , hospital called said platlet count was 814,000 retested me and it was 852,000 sent me in for surgery put iv in talked to anesthiologist ten minutes before they rolled me into OR
surgen and nurse told me it was cancelled because of platelet count
friday went to hemotoligist count was even higher , failed bleeding time test ,have appointmen next week for bone marrow biopsy and tommorow have to get sonograhm on spleen done. all i wanted was my tonsils out now all this . i'm 25 never had anything wrong with me but a bunch off sore tonsils
i reading up on all this cause like lots of you ,the doctors dont know why my platelets are high yet. i just want to know whats with the spleen and has anyone else had to get there spleen check? :confused:

They are checking your spleen for swelling. An oversized spleen has some relation to the affects of PV. I had high platelets (~950k) before beginning Agrylin. After taking the doses my hemotologist directed, I'm down in the range between 450k - 550k. My doctor is fine with this. Itching was a problem for me, but I've fixed that with lots of asprin. I know there is some concern about taking lots of asprin, but I darn near couldn't function when I got a itching "attack"! I treated is with antihistemines for a while, but I had trouble with the drowsiness. Don't worry to much, a good doctor will work with you to help you manage your symptoms, and the underlying causes. By the way, I was diagnosed with PV, and the high platelets go along with the high hematocrit. I control that with a phlebotomy every 8 to 12 weeks.

Hi , I am new to this board.But wanted to respond to High blood platelets.
i am female age 69.My platelets got up to 850.
had to have bone marrow Test so had to go on hydroxyurea been two months am doing fine down to 395. You will be ok Barb. Would like to hear from you

------------------
Hi Junebug, My platelets are 704. U mentioned Hydroxyurea, but from what I have read on it, it causes leukemia if on it for over 5 years. Once your platelets came down, did they take you off it??? I do not want to go on it because I hear a lot of bads things about it. They say I have Polycythemia. All my blood is high, red, white, platelets. I am still not sure because I have not one symptom, and I feel 100% and I went to the Dr for a referal to a Gynacologist and she sent me for a blood test for the heck of it, and boom this is what they say I have. I have seen 2 Dr's already but the 2nd one says he cannot confirm 100 % yet, but is pretty sure. Can you let me know about Hydroxyurea? and if you are on it forever or just till the platelets came down

Thx
Cheryl

I was diagnosed with high platelets last year I'm currently taking hydrea. Is anyone else taking this drug get headaches from it.

hey again
welll i went for my sonogram and it was normal
then i went for my bone marrow biopsy and as with my luck it was cancelled because of a urinary track infection wich believe me hurts but this time i didnt feel a thing sooooo i went back to hemotologist yesterday to see if infection was gone and well it was but my platelet count is back to 850,000, forgot to mention count was 718,000 when they said i had infection so again i have another biopsy scheduled for sept 9th still no answers no nuthing :confused:

Re. Bone Marrow Test for High Platelet Count. My blood platelets have been elevated for quite some time. My hematologist/oncologist wants to do a bone marrow test. Can anyone tell me a little about the test? Does it take long, is it painful, etc? 3 weeks ago my platelet count was 702,000 and it has gone as high as 824,000... Thanks. sapphire12112

Hi Barb,this is barb here,do you bruise easy? I do,I see the hemotologist on the 22nd.
I also bleed alot from very small cuts or scraps. I don't know if I have high platelets,or low platelets. This has been going on for about a year. I was diagnosed with polymyalgia rheumatica almost two months ago,on 20mg. of prednisone a day. I think prednisone can thin the blood. I'm having a hard time dealing with this polymyalgia,but I'm determined not to give into it.
Good luck with your Dr. visit.

i got my bone marrow test done yesterday.. not all that bad ....the first little shot to numb you stings a bit .... then you just felll it going deeper and deeper but no pain just pressure then when the actually pull the marrow out thats the wierdest feeling in the world takes your breathe away not painfull but pressure just actually feels like your bone is beeing sucked out .
then they take a core sample of your bone it self like and apple core you fell the doctor pushing something in and out but not pain
just make sure they numb ya real good tell them that, they will

once the numbness wheres off you just fell like you've been stabbed
anoying feeling but not bad at all

good luck i was real scared but it wasnt bad at all
and i'm the biggest baby

its just the strangest feeling you'll expeirence but not painfull

Thank you, tomatoes49, for the information regarding the bone marrow test. That makes me feel a little better. I'm interested in knowing the results of your bone marrow test and if you have actually learned anything... I am waiting for my doctor's office to schedule a bone marrow for me. In the past year my platelets have gone as high as 824,000 and as low as 598,000 - usually hovering around 700,000.
Last winter I had several things going - a tooth infection and an emergency root canal, sinus infections, colds... I kept hoping that it would go away, but it hasn't (the elevated platelets!).
I'm also going to have a colonscopy and an endoscopy late next week.
Please post the results of your bone marrow test, tomatoes49.
It's nice to be able to communicate with others who understand what you're going through.
sapphire12112

Hi everyone

I have been reading this thread for a while, but didn't register. I had a bone marrow test last week after being followed by the hospital for around 18 months. We started with barium enemas and sigmoidoscopies but everything showed normal.

My platelets have been 750 at the highest and 570 at their lowest. Last week they had gone back up to 680 hence the BMB. My back still aches from it, but it really wasn't as bad as it sounds. I am anxious about the long wait for the results a month seems a long time.

The doctor at the hospital explained that there are some people who have high platelets for no particular reason and all their tests come back normal. These people have idiopathic ET, ie no reason for it. I think mine goes back to when I kept getting tonsilitis a few years ago. I had a really bad reaction which meant that I got covered in guttate psoriasis. Can anyone else relate to this? I have no symptoms of my platelets and I don't take any medication.

Take care everyone

Hi Nascarfan,Sorry i havnt answered.but i am on hydroxyurea 2 a day for a year and 4 months doing real god it has kept my red platelets around 400 to 456 i will have to take them for ever i am 70 years old now.Still break out some and have aches and pains but so for so good.With my age they though that would be the best nedication for me. good wishes for all.Junebug 1934.

Hello everybody,

I'm Naimi (27 yrs old)from Malaysia, since our population is only about 20 million so there were very few of ET patients in my country, thus it's hard for me to share my concern that's why I join this forum...I was diagnosed with high platetlet a month ago i.e during a blood test triggerred by mild hypertension...at that time my platelet was 965k...2 weeks after that it went down to 771 k then 3 weeks later it went up again to 875 and last week when i had a bone marrow test my platelet was 840k....at present my hematologist conclude that I'm having ET since my megakaryocytes were clustered (as per bone marrow biopsy) I've just started with Anagrelide 0.5 mg twice daily..I need to see my hematologist again next month to see the effectiveness of Anagrelide.

:) Hi Naimi,You are so young.wish you the best. They talked about putting me on anagrelide but dicided on Hydroxyurea if it dosn't do the job they will switch to that.I have hypertension too and was having tia's small stroke's,
but havn't had one since they found out my platelets were high mine got up to 950.My platlets stick to gather.I will be thinking of you.Just try to have a good out look about it.I know it is hard to do that but it will help.And take your medications exactly like they tell you.I never miss a pill.Will talk to you any time. Thanks for responding.Junebug1934

Hi all, I have a question that my doctors cannot seem to answer. Does back and body pain go along with the high platelet count? Mine started out at 838, dropped to 699.
I have horrible fatigue, its hard even to sit here and type, my back hurts so bad, and its all over my back and neck, my whole torso hurts all the time. I was diagnosed in July with collagenous colitis and IBS. I don't know if there is a relation between the bowel disease and the blood, I see a hematologist end of october. Its frustrating to have to wait and nobody has answers for you. Thanks and hugs

Sandra

I have been recently diagnosed with High platelet and high white blood count with no other ailments. I have had menstrual cramps for the last two months that I have never had before. At times I hae floating pains and headaches.

I have no idea what is going on in my body but knowing my dad died of cancer at the age of 47 is enough make me a bit paranoid.

Anyone else with similar ailments? I am still hoping some who had the bone marrow testing done can give us some results to them and is that done on the bottome, hip or back?

Thanks

Hi, I hurt a lot of the time. chest bone ,tail bone and back and legs. cant seem to find an answer may be my age.all i can take is aspirin one a day.I have had a bone marrow test.It wasnt bad at all a little pressure when they hit the bone.No worse then having a tooth pulled.Try to relax.My Doctor talked to me and reassured me and told me what to expect.Gave me a little pill to take the morning of my test to relax me.mine was in the back close to my hip bone.I still get real tired fall asleep some times.Good days and bad days.I go to water arobics for exersize. Best wishes Junebug1934

Hi everyone,
I have been reading everyone's threads for a while. I have been diagnosed with essential thrombosytosis as well. I have been on Agrylyn for about 3 years. I hate taking it. My doses change. If I'm doing well my doctor lowers the dosage. Then my platelets shoot up again and my dosage has to be increased... I hate this yo-yo effect. Anyways, I have learned to live with it... I was also able to go through a pregnancy while having thrombosytosis. I couldn't take the medication while I was pregnant, just baby aspirin.... My baby is healthy.. My question to anyone out there is in regards to hair loss.... I have been losing my hair like crazy, even before I got pregnant... Every time I wash my hair, tons of hair fall out..... Has anyone else experienced this????
Thanks!!

I lost so much hair after my babies were born that I had bald patches at the front! I even contemplated a wig! It all came back though. Your body needs to settle down again after having the baby.

i got my results back on 9/23 from the bone marrow
the doctor says i have van buren braums wilkensens disease (spell?)
i dont know the words are so big ,
something to do with the way my blood clots
so i would have to have a special hormone before surgical procedures,
also he told me that i am in the begining stages of essencial thrombocythemia
but dosnt want to do anything medication wise cause i'm so young .
platelet count as of last week are at 720 ,
lower than they have usualy been but since i just found out that i,m pregnant
the doctor say they will continue to drop through out the pregnancy but most likely to go back up after wards...
so i guess this means i'm never getting my tonsils out
but at this point i can careless
seems to be one thing aftre another since august
:yawn:
maybe things will get back to normal one day
-----tara

Thanks for answering back.... I feel better knowing that someone else has gone through this....I used to have very healthy, curly hair. Now my curls have disappeared and my hair is very thin..

Hi Tooolgrl, My blood platelets are still elevated - 702,000 the last time my hematologist checked them. I had a colonscopy and endoscopy yesterday and was diagnosed with a spastic colon (IBS - Irritable Bowel Syndrome), also gastritis (inflamation of the lining of the stomach), erosive gastritis, Barrett's Esophagitis, and Duodenitis. My hematologist told me that inflamation anywhere in the body can cause the blood platelets to be elevated. After speaking with my hematologist a few weeks ago and telling him that I have had stomach problems before and that my stomach just doesn't feel quite right (a dull ache in the pit of my stomach), he asked me if I wanted to see a gastroenterologist before proceeding with the bone marrow test. I said yes. After that, before I had the colonscopy, I decided I would go ahead with the bone marrow, but my hematologist has chosen, evidently, to wait until this test was complete. I could be wrong, but I believe that the reason my platelets are elevated is because of my stomach problems... I believe there could be a connection between your bowel/digestive problems and your platelets also. Do you have a gastroenterologist that you are seeing? Have you mentioned this concern to your hematologist? Good luck and best wishes! sapphire12112

Hi Sapphire, I haven't met my hematologist yet(appt on the 20th)but my GI doc isn't overly concerned. My primary care doc thinks my platelet count is related to my IBD but wants to be sure, I can live with all these problems however the thing I hate is the fatigue combined with back pain, if I could only get over the fatigue and get some energy back I would feel halfway human, all I want is to be able to go back to work, even just part time for now. I have found the past few days if I force myself to get moving and stay moving I can make it through the day without having to go to bed at 4 in the afternoon. I have to have some labs drawn the beginning of next week and then see hematologist week after and will see what she says. What do they do if your count is related to inflammation? Do they just keep an eye on it?? I am not really looking forward to a bone marrow test but if its necessary to help get my health back then so be it. Thanks for posting and good luck with your health.
hugs
Sandra

.
i just found out that i,m pregnant -----tara

Congrats on the pregnancy! Hope all goes well. :angel:

Dear Tooolgrl,
what are the symptoms of the IBD that u have?..

Dear KlPaiz,
apart from yo-yo effect on your platelet count do u have other problems associated with anagrelide?...I've just started with Anagrelide about 2 weeks ago..it's damn expensive...how much does it cost you for 100 tablets?

Dear Tomatoes49,
I'm young too...just 27 yrs old...what were the shape and behaviour of your megakaryocytes based on the bone marrow test?...mine were clustered that's why my hematologist suspected that I got ET (essential thrombocythemia)...currently I'm on Anagrelide (still new less than 2 weeks)
for further info on ET i would suggest you to go to this site http://www.mpdfoundation.org/

Hi Naimi, I have a disease called collagenous colitis, it is a microscopic colitis that causes really bad diarrhea, flu like symptoms. I also am afflicted with some kind of arthritis or fibromyalgia which causes horrible back pain. I am on vicodin for that and that has stopped the diarrhea. The doctor says it is probably the inflammation causing the platelet count to go up but I want a hematologist to tell me for certain. good luck and hugs.

Sandra

[COLOR=RoyalBlue]

Congrats on the pregnancy! Hope all goes well. :angel:

thank you, angel :)


Tool girl --- I'm 26
my blood clots internally but when it hits air it decides every one goes it seperate way and doesnt clot go figure , so i take asprin to thin it and then i get a extra hormone to clot it before surgical procedure ???????????
who knows but after every thing this summer i'm to the point i think its kind of funny

you see for the last two years i've been on anti depressents for panic disorder
i would think i was having a heart attack and couldnt breath like my heart was going to slow and any second i was just gonna drop dead ..
so for a while i wnet to a shrink and he would ask what are you thinking about befroe this happens or who were you with etc... and i was always like nuthing, noone...then they say its all in you head you are doing this to yourself take this tranquilzer take this pill dont think about it
so i did and when i would get that feeling i would say i'm just doing it to my self ( like my worst fear in life is to die and i'm making my self feel like i'm goona kick the bucket , right?) so i do this for two years , with always in the back of my mind why would i do this to my self ....

soo to shorten this novel , i was never doing anything my heart was working to hard my blood was to thick and i was having head rushes and now its been a month and i'm zanax and zoloft free and completely fine no panic cause when that feeling comes on i know its real and what it is and i doesnt scare me ..........so.. i'm happy i'm not nuts and that i have this rare blood disease that is not life threatning just as long as i keep it monitured
---------------TARA

Re. Bone Marrow Test for High Platelet Count. My blood platelets have been elevated for quite some time. My hematologist/oncologist wants to do a bone marrow test. Can anyone tell me a little about the test? Does it take long, is it painful, etc? 3 weeks ago my platelet count was 702,000 and it has gone as high as 824,000... Thanks. sapphire12112

Had bone marrow test yesterday. Of course, no results as yet. If administered properly, it is not really painful. Kind of like a bee sting which lasts a minute or so. Today if kind of feels like I got kicked in the butt ....very manageable, however.

Regor,
Thanks for the information regarding having your bone marrow test. I look forward to seeing your results posted here. I saw my gastroenterologist Friday, 10/15, and he went over my digestive problems with me (severe gastritis, erosive gastritis, esophagitis, Barrett's esophagus, duodenitis, and spastic colon). I asked him if the gastritis (which is inflamation of the stomach lining) could be causing my platelets to be elevated. He told me that he treats a lot of patients who have gastritis and their platelets are NOT elevated! That threw a kink in my belief that I had the answer to my elevated platelets (over 700,000 at last check - and as high as 824,000)! Guess it's back to the hematologist now - and I'm willing and ready to have the bone marrow test done... After the responses I've had on Health Boards, I'm not quite as scared to have the bone marrow test now! I'm thankful that this forum exists and for all the helpful information that people post here! Best Wishes! sapphire

Hi All,

I just started going to a hemotologist six weeks ago. The first time I went, my blood platelets were 1,400,000. She started me on agrylin (low dose at first) and two weeks later my count had dropped to 1,100,000. I went again last week and its dropped to 900,000. It appears that the agrylin is working (with no side effects) but I still have a long way to go. I hope the medicine continues to work. Otherwise, the Doctor stated she will put me on some sort of chemotherapy. Keep your fingers crossed.

Best wishes to you all.

June

Hi JM,Glad to hear your platlets are down.and that you have got the right medication that suits you.Ever one is different.I went to my Dr. last week and my platlets are 440,000 so at least they didnt go up.dont have to go back for two months so grateful for that.I still tire easy but try to keep busy.You Keep improving.I will be thinking of you.So glad we have this board .Not to many have ever heard of this blood disorder. At least we can discuss it on here. Junebug

Hey im 15 years old and suffer from an iron defieciency my iron level was non existant in may this year. i have had 12 blood tests since then and my saturation is at 10(range 15-45) and my iron is at 6(range 7-26) it is sttrange and my doctors dont knwo why because i take 3 iron tablets a day the think i may have a bleeding ulcer in my stomach. so i go to hospital soon. my platelets are at level 403,000 i was reading though all your messages and your platelets seem to be quite a large amount higher and i was wondering wether or not to be concerned about these or not? your reply would be greatly appreciated.

oh and i suffer from severe migraines and get a headaches everyday and a migraine at least once a week.

Hi,

Angel - Generally the appropriate platelet count is between 150,000 to 400,000. Although your count is above 400,000, I don't think its a problem. However, please talk to your doctor.

Last doctor visit my platelet count dropped to 686,000. My doctor is happy with the results I'm getting from the Agrylin, so I'll be on it for a while. Same dosage.

J.

I have elevated platlets and have been through many tests to eliminate leukema or cancer (the findings of) which they have not found. They are saying that I have essential thrombocythemia and are recommending that I start taking the drug Hydroxyrea.
I would like any feed back from anyone taking that drug
Sincerely,
Ann-Marie Huettner

Hi, I am on Hydroxyurea have been a year and a half. I have done real good on it. One time my platlets went up but i had uti infection.I take two pills a day.I tire real easy.But i go and take water arobics for exercise.
the dr. thought this was the best medication for me.Some people have to change but hope this works for you to.Keep me posted on how it goes.Best wishes Junebug34

Hi, I'm new to the board today. I'm searching for information on high blood platelet count. Last week when I was in for my yearly checkup my doctor told me that my platelet count has been elevated for over a year. 6 months ago it was 490,000. Last week 424,000. I am being sent to a hematologist. I'm a bit concerned about this, because she mentioned problem with bone marrow as one possible cause. This all sounds a little scarey to me and I'm wondering if anyone else has delt with this and what was your experience? I'm a 56 year old female with history of thyroid cancer. I have high blood pressure which is controlled. And I've had a stroke that didn't do any permanent damage. I take a 81mg asprin every day.
Thanks for responding.

:) I'm new to the board and am interested in hearing from others with very high platelet count and exchange side effects from that disorder. My count has been 700,000 and higher for the past 4 years. Today it was over a million. I have been taking Agrylin 3t/p/d , but will start taking 4 plus a day. Also getting a blood transfusion. Some side effects have been frequent headaches, itching .Hopefully the new blood will help the fatigue factor. Would like to hear from anyone who has been given a blood transfusion and if it gave them more energy.

Hello. I Want To Thank Everyone For Posting. I Have Been Reading These Stories For Several Weeks. My Platelets Were 526 In July. I Questioned My Doctors Because I Had Went To The Emergency Room With Appendicitis. Turned Out It Wasn't Appendicitis. They Told Me I Had An Ovarian Cyst. Went To The Gyn The Next Day And Had An Ultrasound. Suprise! No Cyst Had Been There. They Retested My Platelets A Week Later. It Was Down To 497. The End Of September I Went To The Er Again With Heart Palpatations. Again, My Platelets Were Elevated. This Time To 547. I Followed Up With A Heart Doctor For The Palpitations. He Believed It Was My Thyroid. He Questioned My Blood Work And Told Me To Go Back To My Pcp. The Next Week I Was Referred To A Hemotologist. Since Then, My Platelets Were 559 And This Past Week Down To 505. I Go Again The Day Before Thanksgiving. If It Is Not Down I Have To Have The Bmb. I Am So Glad Everyone Has Talked About The Bmb. I Have Been Very Scared. I Have A 3 Year Old Daughter, I Work Partime And I Am In Nursing School. I Have Been Having Severe Fatigue. I Am Glad I Can Read These And See Everyone's Symptoms.

I am new here, and have just began seeing a hematologist. Today I go for a CT scan and a LAP Score (not sure exactly what that is). The doctor is concerned, my wbc and platelets have been high for years now, and this is the 1st time I have seen a specialist for it. The CT is to check my spleen! Last week, my platelets were 530, and wbc 17,000. I am getting really nervous now, especially because of the information I have read on the internet. Any input would be great!

Since being diagnosed with high platelets in May of this year, (jumps around between 475 and 575) I have had a colonoscopy, chest x-ray, abdominal ultrasound, MRI revealing kidney cysts and a bone marrow biopsy. Nothing serious revealed by any of these tests to explain fatigue, burning eyes and poor sleep and anxiety.
A blood test showed high homocystine level....a marker for inflammation which I suppose could cause high platelets. Now working on the homocystines with folic acid, B-6, B-12 and TMG. Level seems to be coming down slowly. This is complicated stuff but it will be worth the effort if the root cause can be found. Comments? :confused:

I got the results of my bone marrow test on Nov. 23. No cancer or leukemia - thank the good Lord! My hematologist/oncologist still doesn't know what is causing my platelets to be elevated. They drew 4 vials of blood to get up to date tests and scheduled me for a lower abdomen CT scan and a chest x-ray on Dec. 2. He wants to have current information and send me to Emory Hospital to see if they can determine the cause of my elevated platelets. They have generally ranged in the mid-700,000 range - with a low of 598,000 and a high of 824,000 over the past year. My other health issues are hypothyroidism (I am on medication for this) and some stomach issues that I have been dealing with (gastritis, erosive gastritis, duodenitis and Barrett's Esophagus).
I didn't know that my platelets were elevated until about 14 months ago when I had presurgery tests done (for a hysterectomy). About 3 months ago when I decided I needed to go back to my gastroenterologist, I found out that he knew that my platelets were elevated 5 years ago - 682,000 at that time! He supposedly was going to tell me on my next office visit. I had thought I was okay and didn't go back until about 5 years later - which was a mistake. Any stomach problems should be checked into since severe, life threatening problems can develop from untreated digestive issues.
Comments from anyone with knowledge or thoughts about similar problems would be greatly appreciated... Harry... Any thoughts? Sapphire12112

I had an elevated platelet count (480,000-ish) & high blood pressure and, hating pharmacutical companies, I decided to try the most logical .. Instead of taking diuretics to remove the liquid from my blood (which sounded like a bad idea with elevated blood platelets with the clotting risk), and since the blood pressure medicine made me feel like crap, I went off both. I thought that perhaps it might be more logical to just get rid of some of the blood by donating it--and lessen the pressure on my arteries and get rid of some of the platelets at the same time. It sounded too simple, but the results on the blood pressure was immediate-from 159/97 to 125/78. This effect lasted until about 2 months (I monitored at home) at which time I donated again. After the third donation, I've not had any real rises in blood pressure and my platelets are normal. I only took vitamins w/iron after each donation and wasn't on any other medication except aspirin. Oh yeah, the blood bank, upon hearing I had high platelet count, asked if I would be willing to be a "Platelet Donor", whereby they only remove platelets from your blood and recirculate it back into you. It takes a few hours though, but is FREE and has the side effect of helping others, like cancer patients, etc.

Hi, I went to my Dr. yesterday. my red platlets was down to 390 i now am anemic so he took me off hydrea for a week untill they see if i am bleeding some where. I havnt felt well lately.Go back in a week for more blood work.And stool sample. Will let you all know what happens.Hope all is doing good.Sunnyside you ask if any one gets headaches from hydrea i never have. Junebug1934

Hello I'm new to the board. Had a routine blood test beginning of the year which showed high platelet count, nothing was done for it at the time, got another one done 3 weeks ago and platelet count has risen and am also anemic. How can I be anemic with high platelet count?? and what if anything does it mean.
Can anyone help me??

Kia Ora. Just joined the board. I too have high platelet count although nothing is being done for it at the moment. Did routine bloods beginning of the year and found out about the high pc and went back 3 weeks ago and they've gone up again also have anemia, don't get that, high pc and anemia??? So anyway they gave me iron pills and will get me back for more bloods. After that, ? . As far as I can figure it can mean absolutely nothing at all except more meds.

Hi Just joined this site and am anxious to meet other people with this problem . I was diagnosed 10 yrs ago. Am a female and 63 years old. My P count was 1150 when I found out I had this condition.... over the years it was lowered on Hydroxeurea and recently it has shot up again to 975 .. now my medication has been increased again . I started with 1 500 m and now I am at 5 500 m .... my system seems to getting immune to the drug ... Hydorxeurea ..... is there anyone experiencing this problem. The drug has side effects especially one is at a greater risk of catching viruses. I just fought one for 4 weeks. It makes me very nervous to even travel I am so afraid to get sick. Hope to hear from someone to share with

Hi Sygun,I have been on hydroxeurea for a year and a half.ever thing was fine for a year but it lowered mine to much got anemic had to lay off of them for a week they are back up to 386 so go back for blood work the 12 of Jan.my platlets were up to 850 at one time.you will adjust to them. It is easy to get infections. But medication will take care of that.Just try to have a good out look on it and make the good days count.best wishes to you. Let me know how you do. I am so proud of this board.Where we can share things with each other. we are not alone.Junebug34

My blood platelets are still elevated - 700,000. Barium CT scan (to check spleen), and Chest x-ray were normal. Bone marrow test revealed nothing unusual. My hematologist wants to find the root cause of this and is sending me to Atlanta in hopes that they can find the cause. I am on no medication for this. Will be going to Atlanta next week...
There has to be a reason for the platelets to be elevated, doesn't there? Evidently my local hematologist thinks so. Sure hope they can find the cause soon... Good luck to you all & Happy New Year! sapphire12112

Since my last Annual Physical my Platelet count is over 500, I am very nervous and concerned, I am Male at 34, Does any other young people have this, I don't have any other health problem.

My Physican has recommended me to see a Heamatologist but said nothing to worry about just for him to review my case.

Regards

I would defenitely see a Heamatologist ... he will probably do a bone marrow test to see what is going on..... and yes young people do get this condition ..... do you know what blood type you are...... i am curious...... i am 63 and was diagnosed 10 years ago ..... went on hydroxeurea to bring count down ....... hope this helps ... regards

Sapphire

When you say your BMB was normal, do you mean that you had an increase in megakarocytes, but no genetic abnormalities, ie, you don't have leukaemia. My bmb showed that I had 'typical' ET bone marrow, with an excess of megakarocytes(that is, the things that platelets are made from), but no leukaemia. I just wondered that's all.

Just wanted to share with you my visit with a hematoglist. I have been carry a count in the 500,000 range for the past 3 years. My hematoglist was me have a blood test run every two months watching my blood tests counts. He told me that I have Myeloproliferative Disorder. This is an umbrella for several different blood conditions. Only with a bone marrow biospy can it be determined which condition I have. The doctor told me that since I have been "holding my own" for the past three years that a BMB would only be preformed if and when my count got above 600,000 and he felt he needed to start treating my condition.

Through researching and wonderful people I have been in contact with over the internet, I have learned that drinking lots of water dailey and 1 81mg baby aspirin helps me emensely with the aching bones, leg aches and head aches.

Try not to become to worried...just stay in close contact with your hematoglist getting updated blood tests. People live with these conditions for a very long long time. I feel that I was "blessed" having been made aware of my high blood count at the onset instead of finding out only after it becoming a very serious situation.

Wishing you all the best....

Thank you Grif2UAll and sygun!

I plan to see the Heamatologist on Jan 14th. All the information and support I find here makes it easy for me.

Is there any other Health Board with higher Traffic than this board.

sygun: I don't know my blood type for sure, It is most likely O+

Grif2UAll: Do you mind telling me the approx age range and gender if you don't mind?

So far I have read that typically older folks and recently younger woman have the Thrombocytosis, Me being 34 and Male makes me more worried.

Thanks All who have posted on this thread.

Undercoat:
If I remember correctly, my hematologist said that my bone marrow was producing platelets in a normal manner - just producing too many. I wasn't familar with "megakarocytes", but I have made a note to ask my hematologist about this. He saw nothing to make him think I had leukemia or cancer, thank goodness! I had an appointment with a hematologist at Emory in Atlanta this past week. They will have their pathologists look at my bone marrow slides and I should hear from the doctor by the end of next week. They drew 5 vials of blood to do another CBC and also some chromosone tests... The doctor gave me the impression that since it seems my platelets have been elevated for over 5 years and are not continuing an upward trend, that it is likely that I have thrombocythemia and they may not be able to determine why. When all the results of the most recents tests - and their opinion of my bone marrow slides - are in, if it appears that it is thrombocythemia, they will probably just suggest that my platelets be checked every 3 to 6 months by my local hematologist. I've had a CBC almost every month for about a year and a half now. Once my platelet count was 824,000 and once it was 598,000, but it is generally between 700,000 - 760,000...
I have hypothyroidism and am on medication for it. I have some digestive issues also - gastritis, erosive gastritis, duodenitis, esophagitis and Barrett's Esophagus (at least my gastro doctor diagnosed me with these digestive problems - I really hope he is mistaken about the Barrett's, but I believe that I will lick this problem!). Just thought I would mentione these health problems in case anyone else might have similar issues... What is your platelet count and how long ago were you diagnosed?
Best Wishes, Sapphire

Sygun- I just read your posting dated 12/26/04- I would like to recommend a site I joined which is very informative. mpd-net@listserv.acor.org They can recommend a hematologist that specialized in MPD's and that is important since they are relatively rare and not all hematologists know alot about them. I was diagnosed 4 1/2 yrs ago at age 52 1/2 and was on agrylin for 4 yrs and got along good. My platelet count ranged from 970k and was around 430k on agrylin. I was taken off agrylin 6 months ago and now only take aspirin.
My hematologist was concerned about the UK trials showing agrylin causing heart problems, also he attended a seminar and talked to Dr. Ayalew Teferri (Mayo in Rochester specialist) and since I had not had any symptoms prior to diagnosis of Essential Thrombocythemia, he recommended I go off agrylin. I am doing good so far will have my platelets checked again in 4 weeks to re-evaluate. This site is made up of people with Myleoprolific Blood Disorders. It is a daily posting I recieve and you can read, learn, ask questions. There are (as with any subject) differing opinions and you then have to decide what you are confortable with regarding your own condition. HOPE this helps.

I will begin taking Hydroxyurea 500 MG. Just wanted to know if anyone out there can inform me about possible side effects.

:bouncing:

I Will begin the med Hydroxyurea 500MG. Just wondering what the potential side effects might/could be. I was diagnosed finaly after a year of lots of tests for cancer/leukemia they concluded that I have ET. I am a little nervous about taking the drug so I am hoping to hear from someone.
Many Thanks

just to check in
with you all
my platlets have drop lots since i been pregnant
i'm at 450 witch in 400 less than normal
the real test will be after the baby is born to see if it sky rockets again
in the mean time i'm 6 months prego and see my hemo everymonth to
continue monitoring the count

pregnacy and et agree with me
---tara
p.s. its a girl

I HAVE BEEN DIAGNOSED WITH ESSENTIAL THROMBOCYTHEMIA I am going to be taking the med hydroxyrea tonight. Is there someone out there that is also taking that med and could tell me what the possible side effects might be is any? I sure hope to hear from sombody please..

Hi elduckadoo,
I am on hydroxyurea have been on it for a year and eight months.Had no problems with it for a year. But have had to adjust my dosage a few times. I take two a day.
Sometimes when i have an infection they will go up.I get my blood tested ever 4 weeks.My platlets were over 580 this week.Had an infection in my finger nail.I really have had no bad side effects.But try not to miss taking them like your Dr. ordered.I have a set time so i want for get.I take one in the morning one at night.Best wishes to you.Let me know how you do. Junebug34

First, a caveat. I am not a doctor.....and I am not attempting to give anyone advice. I am only reporting my own experience.

My platelet count in the last year has fluctuated between 475,000 and 617,000. No less than three hematologists, including one at the Mayo Clinic in Jacksonville, have told me that they do not treat counts like this with medication. In fact one hematologist told me that when they medicate someone whose count is up in the 900,000 to 1,000,000 range, they are quite pleased to get them down into the 600,000 range.

I've had lots of tests (I won't bore you with the names) and all are quite normal...been advised to check the count every 3-6 months and seem to be getting less and less freaked out about this whole thing as time goes by. After all, there is very little I can do to control it, no?

I hope at least some of this has been helpful to someone. I could elaborate, but this about sums it up.

Hi, I am new to this site and find the postings very interesting and informative. My platelet count was 430 in 2001 and by Dec 2004 it went up to 625. First hematologist immediately suggested BMB. AM reluctant to go through the pain, so went for 2nd opinion. At the same time am having a root canal done which is long over due. I hope the high platelet count is caused by the abcess in my gums. 2nd hematologist too suggested a BMB. I will wait for 1 month after root canal before going for another blood test. I read that grape seed extract that contains resvertrol inhibits platelet aggregation. Anyone heard of this? I eat right and exercise daily. Just turned 46. Am worried and concern if I have to go on full time medication. Hematologist said I have no choice if results show that I have to. Am trying to have a positive mind and taking things one day at a time but sometimes cant control my worrying mind. Should I go for a BMB? My wbc is a bit elevated in Dec 2004. RBC is within the range due hematologist said it's a bit high for a woman

I would not be concerned about the BMB. I found it no worse than a bee sting. Also, I have been told that it's not a great idea to take the meds which take the platelets down unless it is absolutely necessary....after all they suppress the bone marrow.

You should do as your doc says, but I can tell you from what I have been told by no less than three hematologists (one from Mayo Clinic), none would medicate platelets in the 600's.

HI REGOR201, thanks for your response and assurance that BMB is not that bad. My worries and concerns are less now. My next appointment with hematologist is Mar 14 and he will schedule a BMB for me. Prayfully, all goes well and I need not have to go on med. Keeping fingers crossed.

I take 1 mg Agrylin 3 times a day and 2 capsules 1000 mg hydroxyurea a day and my platelets are still running 640,000. A year ago they were 1,240,000 before they put me on the hydroxyurea along with the Agrylin. I have also been on Interferon. That stuff made me sick and didn't help at all. They really don't know why my body produces platelets so fast.

Hello Iam new as well. I also have high platelets with the glands in my neck swollen.Iam 47 and Iam awaiting a result from a bone marrow test.What I would like to know is does anyone else on the board with high platelets suffer from hot skin especially around the glands?Any help would be appreciated.
Regards
Steve

Hello Junebug, I am wondering what part of the country you reside in? A friend I use to work with, had your same, Junebug name and is the same age as you are. I too have been recently diagnoised with ET and taking Hydrea. I am desperately looking for people in my area with the same disease for support.

Thank you
Mismish

Hello Iam new as well. I also have high platelets with the glands in my neck swollen.Iam 47 and Iam awaiting a result from a bone marrow test.What I would like to know is does anyone else on the board with high platelets suffer from hot skin especially around the glands?Any help would be appreciated.
Regards
Steve
Hello Steve, Yes I too suffer from hot skin, on my hands and top of my feet mostly. And I do get HOT at night when I am still , however there is no fever. I also get itchy skin, if I go for a long walk I will get Hot Itchy skin that feels like it is burning.
Mismish

Thanks for your reply.You say you are on Hydrea.Are you getting any side effects? and did you get hot skin before going on Hydrea?
Thanks for any help as this disorder of the blood thing is quite worrying especially when the specialists seem to find it hard to make a straight forward diagnosis.
Regards
Steve

I don't think they really have any straight forward answers on ET.It is so rare that they don't have the trials and research. a Bone Marrow confirmed I have ET after going to the Dr. for symptoms of "silent migranes", to where I would totally loose my vision in one eye, I would get lighting like, and fuzzy starcase jigjags in my vision.No head pain though.They were like attacks that left me very tired for 3 days afterwards. I was also experiencing sparatic pains down my legs and buttox and numbness in my fingers and toes. I had bruses all over me at one point, for no apparent reason.In trying to figure out what was wrong with me, the platelets were elevated. They monitored my plateltes for a year and they stayed in the 650-700's.Then they started climbing and not going down. My symptoms were also worse. In December they had sky rocketed up to 950,000. I was caught between 2 evils, I really do not feel I had a choice but to start hydrea. I alternate days with 500 and 1000mg.I have been taking it for 2 months now.I do get really tired and "achy" I ache deep inside my bones it feels like. And I get rush like feelings of the flu, It is hard to explain.I had all of these symptoms before the hydrea. When they increased my dose I did get nausea for a short period. My platelets are now staying around 450,000-475,000.Most importantly all of my other symptoms are gone. I have seen 3 different hematologists, because I wanted more than 1 opinion. I have to say, make sure you are LISTENED TO!!.One hematologist told me in the beginning that my symptoms had nothing to do with my high platelets, he in fact made me feel as if I was going crazy. Amazing that now on hydrea my symptoms are gone. I seem to slowly be getting energy again and wanting to do things. Long term I don't think they have any real answers for us suffering from this rare disease. It is so nice to have found this site, It's important to me to talk to people who are feeling like I am, and know what I am going through as well.Be sure to get all the rest your body feels like it needs.
Take care and God Bless!!
Mish

anyone out there
My Bestfriend had a platelet count done last year, but I did know until december2004 she had a count of 2,305 (2,305,000) and they gave her HYDREA 500MG (3 TIMES A DAY) AND ASPIRIN 500MG (1 A DAY) AND in February2005 went down to 1,020 (1,020,000) and if that wasn't enough she is only 26 years old. and a week ago her right arm was real tender, redness and numed. and two days ago it went from her right arm to her neck and her left arm and shoulder. Please help us. I love her so much we all will find out what this is. THERE'S HOPE, GOD BLESS YOU ALL.

anyone out there
My Bestfriend had a platelet count done last year, but I did know until december2004 she had a count of 2,305 (2,305,000) and they gave her HYDREA 500MG (3 TIMES A DAY) AND ASPIRIN 500MG (1 A DAY) AND in February2005 went down to 1,020 (1,020,000) and if that wasn't enough she is only 26 years old. and a week ago her right arm was real tender, redness and numed. and two days ago it went from her right arm to her neck and her left arm and shoulder. Please help us. I love her so much we all will find out what this is. THERE'S HOPE, GOD BLESS YOU ALL.

Hello

In Dec 2004 at a routine visit to the gyn. I complained of fatigue he did a basic blood test and found low iron and very high red blood counts. This lead to a visit with Hemotologist. I have been diagnosed with Polycythemia Rubra vera. After many blood letting I now have lower red blood cell but higher platelets. I have begun taking agrylin. almost no side effects.
I have no side effects from the Poly. I am very active running exercising walking daily. This seems to help alot with problems.

If you have had this I would like to talk with you and share stories. Feel free to email me.
thanks


[ please carefully review the posting rules - no emails ]

My Hemotologist told me Hydrea is to lower red blood cells not platelets. She should get a second opinion.

Hello Mismich.

Im from the midwest and have Polycythemia Rubra Vera. I had a bone morrow test and my red blood cells are over active. I am taking Agrylin to lower my platelets. I have to do blood letting once a week till red blood cells are lower. Doctor wanted me to start Hydrea but said it would/could lead to lukemia. Hydrea is for high red blood cells. No reason either. No cure in site. Exercise is keeping me going. stay active, even when you dont want to.

[ please carefully review the posting rules - no emails ]

Hello all,
My name is Nelson My grandmother who I love deeply has been going to the Dr for the last month and she has high Platletes she was put on Hydra which was working but her red blood cells were getting low so they took her off of it. They were going to wait two weeks to see what her platletes were at (At this time there at 600,000) Dr. said that not much more he can do he wanted to start her on a shot that would cost her 1200.00 that insurance would not cover. He said that might not even work. He also said that she could start on a pill (Can't recall the name) but many people don't like it. If anyone can help and give me any type of information that would be great. I thank you for your time and help.

Hi Nelson

I also have high platelets. It is caused by the taking of my blood because I have high red blood cells. So I give a pint a week until my counts are lower. As a result my platelets have sky rocketed and I am taking agrylin 5 mg. this lowers the platelets. I have been on it a week and they are now below 600, My doctor said hydra is for high red blood cell counts. To my understanding no for high platelets. The pill is not to bad I got dizzy the first time. but now I am ok. You have to drink lots of water which you should be doing any way. Could your grandma have something else going on? internal bleeding causing her platlets to go up? Sometimes doctors treat the problem and not the cause.

keep in touch. :wave:

Ladysmith 101,
Thanks so much in getting back to me, as you can tell I'm very concerned about my grandmother. Very interesting about what you said about hydra being for high red blood cells my grandmother never had that, just high platlets. Whats weird about this is that I have ITP which is Low platlets so we joke about her giving me some of her platlets. I'm in the process in getting her to come to my Doctor now so he can work with her, not to happy with the doctor that see is seeing. Now aim a bit concerned that the Doctor was giving her the wrong medication, Also I guess we need to ask my doctor to check to see if she is bleeding from anywhere else. I pray that she's not she has raised me and she is my everything. Once again thanks soooooooooo much ingetting back to me and anymore info that you have that can help would be greatful. God bless you. Nelson

My Hemotologist told me Hydrea is to lower red blood cells not platelets. She should get a second opinion.
Yes, I say get at least 1 more opinion, 2 if you can. :angel:

I had my Bone Marrow Biopsy yesterday, I was vervous but felt better after it. I just wanted to post my experience so that anyone being nervous about it to feel better as it is not very painful.

Since yesterday evening I feel little pain in the hip and little uncomfortable, That's all.

Now I am waiting for the results, Also my Docter added Hypergammaglobulin.. to the diagnose, Bit concerned about that in addition to current primary High Platelet count(602). I am 34 yr Male and mostly in the board I have seen folks with older age with the problem.

Good luck to all and God bless you all!

Hi Guys. I am new to the Board with Essential Thrombocythemia. A few months ago, I had routine physical and was told my platelets were 2,4000,000. Went through the bone marrow test, which was uncomfortable, but not that painful. Fortunately no leukemia. I have been taking Anagrelide (9 per day) and 1 daily aspirin and got down to 600,000. Yesterday, it jumped to 720,000, and the doctor told me to take Hydrea along with my Anagrelide and Aspirin. The side effects for Hydrea is kind of scary, but what do you do? I feel better knowing that I am not the only one struggling with this. I work out at the gym, and occasionally take protein shakes. It seems when I do, the platelets rise. Wonder if there is any connection. In the last 2 months, I have been blowing blood out of my nose. Also, I have extreme throbbing in my neck, shoulder, and arms when I sneeze. Sounds stupid, but it's true. I noticed some of you are experiencing numbness in your limbs. What's the deal? Hang in there everyone. God has us in his hands.

Hello Forgiven

What does your doctor tell you the side effects for hydrea are. They told me long term is lukemia. The last couple days I have been extrememly tired and wiery. my platelets are 56. Do you have headaches when yours jumped to 720? Did you notice a difference. I have a pain between my shoulder blades been there for quite some time. I just started to see rynards disease also. where your fingertips turn white. No blood going to the tips, kinda hurts but not too bad.
hang in there.
Keep in touch

Hello Ladysmith101,

The doctor did not inform me of any side effects. I researched it on my own. It covers everything from weight gain, hair loss, nausea, weakness, and more. I am just doing what he says, because I don't know what else to do. I am afraid to take hydrea, but more afraid not to. I have had the throbbing pain for alomst a year now. No numbness, just throbbing pain in neck, shoulders, and arms, and hands, and I only feel it when I sneeze. Strange, isn't it. Wonder what causes your numbness. Are you taking the hydrea? I have not noticed any difference yet, except it 's putting me in the bathroom alot. Hope to hear back. If your platelets are 56, sounds like you can have some of mine. Why leukemia as a long-term effect??? I noticed an earlier message you left that your hematologist said hydrea does not lower platelets. Would you recommend a 2nd opinion?

Forgiven

Hello Forgiven.
I am not taking the Hydrea. The doctor wanted to start me on it and gave me a prescription and I bought the stuff. But the pharmisist sat and explained the side effects to me and scared the begeebers out of me. When I went back for another doc visit i told him the pharmisist scared me. So he gave me agrylin. I will give blood one a week when the red blood cell rise. Then my body thinks I am bleeding to death so up go my platelets. The Agrylin is to low my platelets and works ok.

My doctor told me that long term use of Hydrea may/could/would cause lukemia which has a two year life term with no cure.

My doctor told me Hydrea would lower my red blood cells because my bone marrow is over productive. He also said a hormone could cause your red blood cells to rise but the tests proved negative on that.

The agrylin gives me days of good and bad yesterday I was up and feeling great I work in an office. I walk on my lunch hours daily and lift weights. Plus I will be training for a triathalon. Last year I was so exahausted after one mile of running I could only walk most of the run. After a few blood draws I really great until my platelets started to soar. Now I am tired off and on and walking up a simple set of steps makes me winded and light headed.

I dont know what to expect when I start running. I also have bouts with diareah and pains in the stomach. The doctor said if I cannot tolerate the agrylin and aspirin and if I dont get a bleeding ulscer I will have to go on the hydrea. Then I look forward to getting lukemia. This is a rare disease he told me and dominant in males. I am a 47 yr old female and was very active and healthy. I think this might be why I didnt die or have a stroke before I found this out.

He asked how I could be so tired and wore out and still be active. I said I force myself. LOL
Tell me more about youself. Could there be something in your water supply. I often think about our water being polluted. My bills are mounting and testing water would be costly. I dont know.

Keep in touch.
M

Hello -- Im new to the site and I am hoping others can walk me through this. My 8 yr old daughter has had lower abdominal pain for the last month. We thought it was from her surgery, where she had a tumor removed from her R. ovary this summer, and now there were adhesions. well, the docs told me no, that its not possible for her to have adhesions.. So, I took her to another doctor where they did some bloodwork. Come to find out, her platelet count is over 801,000! But, instead of address this with me, they told me to have her take antacids for her tummy-ache --- They refuse to acknowledge that there is something wrong here!! I was told that kids this young dont get high platelets unless they have a cold or viral infection -- neither of which she has. So I took her to a pediatrician again this morning -- She believes my daughter may have Crohns Disease, and she too is worried about the platelet count!! Does anyone know what else can cause this???

Thank-you & God Bless :confused:

Hello Ladysmith101,

Sorry you are having such a rough time. Sounds like you take great care of yourself. I am 32 and exercise a couple days a week. Perhaps, I should just watch tv and eat icecream. maybe the exercise is not working? Anyway, my platelets today came down to 690,000. In the right direction, but a long way to go. I understand how giving blood can bring down your red blood cell count, but it is strange that your platelets try to compensate.

Forgiven

Had a root canal done and blood test still shows high platelet count(658). Somehow visiting the hematologist at times is a waste of time cos we know what the answer or advice will be. I just came from a visit and as expected, he scheduled me for a bone marrow biopsy and as expected he said I should go on Hydrea or Agrylin. We dont need a hematologist to tell us this. It's frustrating. Read too that hydrea causes leukemia and it's used to treat skin cancer, ovary cancer and others. Wonder if hematologist should prescribe hydrea to us,its like either we suffer from the effects of high platelet count or die of leukemia. It's jumping from one fire to another. Am beginning to have no respect or faith on hematologists but to depend on God to pull me through. I too exercise regularly and eat right. I wonder if exercises raises platelet count. Some of you can relate to my frustrations. Sometimes ignorance is bliss.

Still frustrated

Hey Frustrated,

Man, I feel your pain. Exercise seems to do no good. Same ol', same ol' with the Hematologists. Same answer every time. I'm on agrylin and hydrea. Scared to death to take the hydrea, but scared not to. I think you hit the nail on the head. Hematologists and medicine can only do so much. God can take care of all. I am a Christian and fully believe that God heals. He does not heal everyone or every sickness. The Bible tells of when Jesus stepped around many people to heal one person. All is done to glorify God. We use what we have to glorify God too. It may not make sense to us now, but one day, all will make sense when we stand in front of Him. I'll pray for you, as I am in the same boat. My platelets are 690,000.

-Forgiven-

Hey Guys,

I just thought of something. The hematologist originally months ago told me that the high platelets are cused by an inverted arm on chromosome #9 after they did my BMB. Not exactly sure what that means. Anyone have an educated guess???

Forgiven

Hi Everyone,

I was sent to a hematologist last year, in August for high platelets, in the 700,000 range, I saw him again in Dec. and will be seeing him in June. It seems most people here are on meds for this, my Doctor doesn't seem too concerned and has me on no meds.. Could this be because I have no symptoms?

Cass

Dear Forgiven,

I am a Christian too and know that God is the only healer. Thanks for your encouraging msg.I am surprise that at 690 level, you have to take agrylin and Hydrea. I read that we need not go on med until it goes beyond 700. How long have you been taking agrylin and what are the side effects? I have started taking raw veg and fruit juice and am wondering if anyone out there are into juicing for better health. Read that certain vegetable juice prevents or controls certain illnesses but have not come across any for high platelet count.

will be praying for all in this board.

Still hoping and praying for a miracle

Dear all,

Dont know if any of you have read this website. After reading it, taking hydrea or agrylin is not as scary as it originally sounds. I am less worried now.

{removed}

God Bless

Hey guys,
Good news. The doctor has had me on agrylin for months to bring my platelets down from 1,6000,000 to the 600,000-700,000 range with no major side affects. I was taking 9 a day. When the platelet number hit a wall, he added 4 hydrea per day. After 10 days of this, my platelet count lowered. It did not affect my red or white blood count.
I'll tell you what I really think it was... Sunday, we took the Lord's Supper at church. Immediately before I drank the grape juice, I prayed, "Alright God, if I have bad blood, then give me the clean blood of Jesus Christ." Monday, my platelets were 153,000. YEAH!!! I am tapering off some of the meds to allow the platelets build up just a little and hopefully stabilize. I'll tell you what... if any of you have not tried this, get on your knees tonight and pray for the clean blood of Christ. I continue to pray for you all.
God Bless,
-FORGIVEN- :angel:

Hi, Unforgiven! :bouncing:
CONGRATULATIONS on the lower count! my count is at 1.2 million. i hope your prayer works for me too! :) congrats again!!! [/SIZE]

It at 350,000 as of yesterday. Now if it will only maintain. Are you taking meds to get it down from 1,200,000? First priority is to get it under 1,000,000. What and how many are you taking?
-Forgiven- :angel:

Dear Forgiven,

PTL for your lower platelet count. I am sure you will maintain the desirable range with med and prayers. You bet, I will be on my knees tonight and every nite to pray for us all.

I have been reading alot of information the last couple of days on high platelet counts. I had blood work done at my yearly physical at the end of last week and my doctor told me that my platelets were elevated. They said my reading was 578,000. I do not like any of the information I have found as to why my platelets would be elevated. At this time my doctor said they are not worried about them. From the information I have read I do not understand why they wouldn't at least want to run other tests. I was hoping to get more information from somone that has experience with this that could help me to understand why they would not be wanted to run other tests. Anything, really. I am really worried that something might be really wrong and the doctors are not paying as much attention as they should be. Any information or questions would be much appreciated.

Thanks

My husband has had a dramatically high platlet count on several occasions during the past year. He also has been very anemic, and the hematologist said that it was "iron deficiency anemia" so it was most likely due to bleeding somewhere. Some of the nurses/doctors asked him if he ever had any problems with his blood clotting (which he hadn't) when his platelet count was so elevated. Anyway, to make a long story short, he had a recurring bleeding ulcer that went undiagnosed for several months. In his case, that would completely explain the high platelet count because if you're bleeding, the platelet count increases to try to stop the bleeding. If your count was high just that once, I wouldn't think too much of it. I would expect to have another blood test done sometime soon to check it again. If it's still high, then my guess is that the doctor may send you to a hematologist for a blood work-up. Good luck.

PLEASE HELP! My friend is 30 years and she has 16 month old boy. She started Hydroxyurea drugs week ago b/c her platelet count was 2.7 million. Today she had another test done and it went up to 3.9 million!!! Is it normal that when you start taking the drug your platelet count goes up initially? If not what else she can do? She had already bone marrow biopsy and it's not lukemia. Her PC was about 1.9 million and it was going down to about 1.4 million and all of the sudden it went up to 2.7 million as of last week and today... I just don't know if there is anything else or anybody else that can help her (we live in GA).

i have low platelet count and i have blood disorder called TTP
and i go regular to a hematologist and i have to do the bone marrow thing but i don't remember my b/c i was going in and out. so far i been ttp free for 11 months now and i had it twice :angel:
:wave:

That's certainly strange that it went up. I can tell you what will help. Start praying for clean blood. Pray for the blood of Christ. I promise. I have kept my platelet count down in the 300's for several weeks after I prayed for clean blood and have cut back on my meds. I wish you well.
God Bless
-Forgiven- :angel:

Hi Forgiven,

Hope your platelet count is still at the 300 range. Understand you are in agrylin and have no major side effects. What minor side effects are you experiencing or have experienced?

God Bless

Good Morning,

I am a 30 year old male that lost my 26 year old brother unexpecteldly in November 2004.They say the cause was a drug overdose but he wasnt a drug user just under alot of pressure in his job and was very experimental.It has killed me and my parents.Ever since then I have experienced a pain in my left side of my body.Went to the ER in December of 2003 and they said everything was fine.This past February I went to my GP for same pain,did a EKG and everything was fine.She ran blood work which I hate but needed to do it.Called me a week later and said that my Red counts were all high.All a bit out of the high range.SHe was more concerned with the platelet count which was 968,000 and referred me to a hematologist.He waited 2 weeks ran blood work and my red count were all a little more elevated with my platelet count now 1.132 million.My white count also went to 14.3.He said CML was probably ruled out because of my LAP score of 86.My ESR was a 1 and MU Erthropoietin was a 4.7 with the CRP 0.2 which were all Thank G-d good.He said only way to find out what is wrong is a bone marrow biopsy.I am so so scared.Not for sake but G-d forbid something is wrong with me for my parents sake.He said it could very well be a MP disorder and is very treatable.My insurance denied the request for the biopsy and cat scan said he needs to try medication first.SHould I get a 2nd opinion?Can they try medication before the biopsy.I rescheduled it for next Saturday is an inpatiens with a local anisetetic.Is it very painful the BMB?I also have developed like tremors in body occasionally where it seems like blood in my body is stuck and wants to burst through my skin.My GN said nothing to worry about he gets it.Said its a MAgnesium deficiancy without even testing me.My skin actually flaps up and down in certain parts of my body very very scary.Please advise me I think I need a more personal hematolgist.

All I can give you is my experience with BMB. I found it about as painful as a bee sting. The next day I was a little sore...kind of like a charlie horse and the following day that was gone. There should not be any of what one would call pain. Do not fear the process.

Hi Barb, my name is Tina and it looks to me like I have had the same things going on with me. I have been a basket case and I feel doomed. My platets were higher the 1st time I had a blood test and now they are down to 437. I also have high monocytes, whatever that means and my tonsils and glands in my neck have ben swollen for three months. I really don't know what is going on with me and the doc says it is just something you have to monitor because they are not sure of what is going on. Who knows. I asked to go see a shrink to get some treatment for my anxiety. I hope you feel a little better knowing there is someone else out there that has your symptoms. I know I feel better knowing you're out there. Anyway, lets hang tough and ride it out together.

Tina (Surrey BC)

I am 29 years old and am fearful and anxious. I have high platelets 437 and it was higher the week before. I am nervous. I also have elevated monocytes. I have had swollen lymph nodes in my neck and swollen tonsils for three months. I have had headaches. and other little pains here and there. I am worried yet no one else seems to think it is too big of a deal. I am thankful for all the support I have found on this page.

Hi. I am new to board. I guess my problems started a long way back. I have always had low iron up until I got pregnant in 2001. During the pregnancy, I was on iron pills until after the pregnancy. Then in May 2004, I got married and moved Maryland. Probably between July and August, I had really long menustrual cycles and decided that I had to the doctor. The first doctor I went to was so concerned about whether or not I wanted to have another child that he counldn't even answer the questions I have about fibroid tumors or other related issues that could be the cause of continuous bleeding. Finally (April 14) I went to see another doctor and I gave him a history of whats been going on. He asked to do three times. One was a blood test, the other a bleeding time test, and the last is a pelvic sonagram.

Well I had the blood test and here is what came back: Low: Cholestrol-39 (range 40-59); Iron-26 (range 35-155)

High: Platelets-419,000 (not sure what the range is)

Now my OB/GYN (the doctor I'm seeing) wants me to see a Hemotologist on Wednesday (May 11). I had a bleeding time test which was a simple test just to see how long I would stop bleeding and needless to say it took a while. The nurse did not know exactly how bad because she said the doctor would have to determine, but my doctor has not got the results from that test back yet. The sonogram (which I am really worried about) is tomorrow.

Could the continuos bleeding be related to the high platelets? Has anyone else had these type of symptoms? Should I be a little worried? Even though everything is a little out range (besides the iron), my doctor seems to think it is serious enough to see a hemotolgist. I just need some answers and I am a little scared at what I might find out tomorrow. I am only 23 and I do want more children, but I think I better get my health in order before endangering someone elses. Sorry for the long message, but I kinda needed somewhere to let off some frustration. THANKS FOR YOUR REPLIES IN ADVANCE!

I don't think they really have any straight forward answers on ET.It is so rare that they don't have the trials and research. a Bone Marrow confirmed I have ET after going to the Dr. for symptoms of "silent migranes", to where I would totally loose my vision in one eye, I would get lighting like, and fuzzy starcase ji**ags in my vision.No head pain though.They were like attacks that left me very tired for 3 days afterwards. I was also experiencing sparatic pains down my legs and buttox and numbness in my fingers and toes. I had bruses all over me at one point, for no apparent reason.In trying to figure out what was wrong with me, the platelets were elevated. They monitored my platelets for a year and they stayed in the 650-700's.Then they started climbing and not going down. My symptoms were also worse. In December they had sky rocketed up to 950,000. I was caught between 2 evils, I really do not feel I had a choice but to start hydrea. I alternate days with 500 and 1000mg.I have been taking it for 2 months now.I do get really tired and "achy" I ache deep inside my bones it feels like. And I get rush like feelings of the flu, It is hard to explain.I had all of these symptoms before the hydrea. When they increased my dose I did get nausea for a short period. My platelets are now staying around 450,000-475,000.Most importantly all of my other symptoms are gone. I have seen 3 different hematologists, because I wanted more than 1 opinion. I have to say, make sure you are LISTENED TO!!.One hematologist told me in the beginning that my symptoms had nothing to do with my high platelets, he in fact made me feel as if I was going crazy. Amazing that now on hydrea my symptoms are gone. I seem to slowly be getting energy again and wanting to do things. Long term I don't think they have any real answers for us suffering from this rare disease. It is so nice to have found this site, It's important to me to talk to people who are feeling like I am, and know what I am going through as well.Be sure to get all the rest your body feels like it need