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Old 10-06-2006, 11:19 AM   #1
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DixieDoodle HB User
Thrombocytosis????? Sorry, very long!

Hello,

I'm new to this board and I have been reading all the blood related threads with extreme interest. I'm having some problems with my joints and blood. First I need to give a little background on my problems.

About 2-1/2 years ago the index finger joints on my right hand (I am right handed) started to swell for no apparent reason. I went to the Dr and he said that there was nothing wrong my finger, that I must have injured it somehow as there was no sign of arthritis, osteo or rheumatoid. He did blood tests and the resluts were ok, no problems. I accepted his explination as I sometime tend to be a klutz and thought maybe I did injure it and just did not realize it at the time. The swelling did not go down so a couple of months later I went and saw another general Dr. Same response but he did also do bloodwork. They called when the tests came back and said no arthritis, but my MCV was high, nothing to worry about. Finger still did not get better, this time I went to a hand specialist. He could find nothing wrong other than the obvious swelling of the pip joint. Did x-rays, nothing. Sent me for hand therapy, therapy did not work, joints still swollen. Again, bloodwork was ordered. This time the blood came back with many areas in the high range. Westergren ESR was 36, White Blood Count was 14.8, MCV was 98.9 and platelets were at 636 (prior tests they were in the normal range) Neutrophils (ABS) was high at 10.5 and c-reactive protein was high at 6.6. The hand Dr. sent me to a Internest who could find nothing, sent me to a Rheumatologist, he found nothing. Blood work again was abnormal with Platelets at 465, WBC 11.3, MCV at 99.6 etc. I have no signs of infection anywhere and I should mention that through all this, I've been healthy and active. More time went by, no change in the hand other than the swollen joint was now in both joints on my index finger, and had spread to my middle finger. More blood tests with platelts high, MCV high and WBC count high. Hand Dr sent me to a hemotologist who was not too concerned about the tests. He planned on doing a bone marrow but when I was on the table ready to have my butt stuck, he decided at the last minute not to do the bone marrow because my blood work came back NORMAL. That was a year ago. Since this time I have been back to hand therapy to no avail and now the thumb joints are swollen and painful. I can no longer use my right hand much which is very inconvenient since I'm right handed. Aleeve helps for the pain but it seems to be masking symptoms. 2 months ago I went back to the hand Dr for a cortizone shot and he would not give me one untill we did more blood work. You guessed it, blood work came back abnormal again. Platelets are at 520. Everything else is normal. He tried to send me to another Dr but by this time I'm tired of going to Doctor to Doctor to Doctor to Doctor with no answers. I told him NO, I will not go on another wild goose chase and asked him to give me a referral to Mayo. He did and I now have an appointment at Mayo Clinic in October. I have no idea if the joint swelling has anything to do with the blood problem. I'm very worried and concerned, so much so that I've been reading everything I can about thrombocytosis (I found this on my own, it was never suggested that I may have it). Has anybody experienced this joint swelling coupled with the blood abnormalities? Am I acting like a hypochondriac? I also had both of my ankles swell up at the same time for no apparent reason, I figured I may have strained the muscles when exercising, but have no recollection of doing anything out of the ordinary that would cause them to swell up so bad. It took me approx 8 weeks to heal up. I've seen 6 different Doctors now and all of them agree, there is something wrong with my hand and blood, but nobody knows what. I recently have been having other joint pain (shoulder, elbow, ankles, etc.)that is unexplainable and I am extremely fatigued, other than that I am fine, I exercise daily, am not over weight and eat a balanced diet, take vitamins and vitamin E (no iron as it does not agree with my stomach). Can anybody help? Any ideas? Thanks in advance for any help or advice you may give me!

 
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Old 10-15-2006, 09:30 AM   #2
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Kristine70 HB User
Re: Thrombocytosis????? Sorry, very long!

Hi Dixie...
I know it can be so frustrating when no one can tell you what is wrong. I don't know what the WCB and other numbers should be at but I know your platelets should be between 150 000 to 450 000. I had a very sore throat and flu like thing on May 23 to which I went to the Dr. . The Dr. thought I might have mono and sent me for blood work. Everything was ok(so this is why I don't know the 'normal range' of numbers the other counts should be at) excpet my platelets were higher then the norm. He thought they were high because of my throat infection so he asked for me to go get more blood. Came back that they were higher. It was called Reactive thrombocytosis(meaning platelets were high due to something underlying i.e sore throat)So I went for more blood work and they got highter ..By then they went into the 800range. By then I had the sore throat for 3 weeks. Then at the 4th week they went to a count of 1.1 million. My Dr. said that is too high..you need to see a hematologist. I got to see the Hema and she said it may still be my sore throat. I had this sore throat for almost 2 months. She said to take baby aspirin as a precaution and said to get my blood tested in a couple of weeks and if it was still high I would have to have a Bone marrow biopsy. So come August 18 they still were high 937 000 ,she scheduled me for August 23 for a BMB and I got it.. On Sept 27th I learned they could find NOTHING causing my platelets to be high. So I have what they call essential thrombocytosis. A cause all its own . No known reason for them to be high. I still take Baby aspirin a day and iron pills.. (cause they noticed that my iron stores were decreased in my bone marrow,but that would not cause my ET she claims).Its a rare disorder and Im only 36.Most people with it are over 60. Lots of Drs. do not have alot of knowledge on it.I too have swollen knees alot. Where I can barely bend them .. my right leg especially.(Dr. Has no idea why.Alot of people with ET and not being treated find them selves fatigued. With such thick blood it can do that. And your platelet numbers are higher then normal. I honestly beleive that you should have a BMB. Its not as bad as people make it out to be. I had 5 days to fret before I got it done. . So I am not trying to say have it done for the heck of it but I think it may find an answer. I had it done and even though my disease is a mystery at least I know what I have..kinda...
Good Luck and please keep us informed...I'm still trying to digest my news... and Im scared but at least I think I know..
Kristine

 
Old 10-15-2006, 08:16 PM   #3
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Karenann12342 HB User
Re: Thrombocytosis????? Sorry, very long!

Hi, thought I would reply to your post. I had high platelet counts for years but it was ignored till I changed doctors and he saw it was cronic. But before the problem was recognized I had hand arm and finger pain I even had a finger turn purple blue for several days and my doc said it was renaulds, which later I found out wasn't. One day my arm from the elbow down turned white for a short amount of time, like a dead persons. Later I found out they were small vein clots. I also had lots and lots of head aches. I also have high blood pressure and had the vision problems that were called migranes without the headache. Because of the syptoms and risk factors I had, my hemotologist put me on meds even though my count was around 700 to 800. I don't have the headaches anymore. I still have some joint pain but don't have the ache in my fingers and wrists etc. I don't know if that helps anyone, just thought I would tell my history.

 
Old 10-16-2006, 06:32 AM   #4
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Kristine70 HB User
Re: Thrombocytosis????? Sorry, very long!

Hi Karenann

I just read your post as well. And maybe I am sounding so crazy LOL.. Im not any Dr. in any means but everything you described about your symptoms are pretty much the same as having essential thrombocytosis.. the constant elevated platelets,lots of headches,blood pressure can happen and some have found problems with vision due to high blood pressure and the blood. Clots can be causes by it.. thats one of the biggest threats of it.Pain in the digits and almost all the stuff u named.. I was just curious if you Hematologist ever checked you for something else like ET or had a bone marrow biopsy to rule out certain things.It may seem like I am advocating BMB but it seems to do the right job with diagnosing stuff. I know the only thing I ever have had is my high platelets ,nothing else. And people I see on forums have had everything you describe to a tee.. I just hope no matter what you have that you do not suffer at all and get on with your life as normal as you can...
Take care...
Kristine

 
Old 10-18-2006, 11:32 AM   #5
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adam933 HB User
Question Re: Thrombocytosis????? Sorry, very long!

hello karenann12342 , i was reading a post you responded to about thrombocytosis. you wrote about that you had small vein clots. how were the clots discovered? what testing did you have done?

i believe i am suffering from something similar but, not thrombocytosis since my platelets count is low. in the beginning my left arm would get numb and cold. now it turns red off and on through out the day. i have these little lumps under the skin. some are painful and other cause no pain. this has now spread to my right arm and both legs. i develop more and more as time goes on. i have been suffering with headaches every day the past 2 weeks and my blood pressure keeps rising in my right arm but the left arm stays low. my hands and fingers hurt everyday with veins bulging out in my left hand first finger. it feels like my veins jump in my legs, arms,hands, feet and neck. i have been to a number of doctors but, they all seem to blow me off. all my blood work has came back ok. my platelets count is 276. rbc is 5.21. wbc 8.7 which came down from 11.8 in july. immunoglobulin M is a little low. range is 40 to 230 and im at 36.

thank you for your time. Adam

 
Old 10-19-2006, 07:31 PM   #6
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Karenann12342 HB User
Re: Thrombocytosis????? Sorry, very long!

Hi, I guess I left out that I do have ET and did have BMB. I am presently on agrilyn and it seems to be keeping most everything at bay. But I don't think I was ever as bad as Adam sounds. Have you been to a vascular doc or Hematologist. At one time my old doc thought I had carpal tunnel and sent me to a neurologist to find out. All those years I thought I was hypochondriac. If it wasn't for the BMB they wouldn't have known for sure if I had ET. Adam, I hope you can find a doc. who can help you so you can get some relief. Good Luck, Karen

 
Old 10-20-2006, 06:37 AM   #7
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adam933 HB User
Re: Thrombocytosis????? Sorry, very long!

what is BMB?
i have been to a vascular doc but he just blew me off. all these doctors i have been to keep telling me its not my veins and that they are not clots but, they cant tell me what they are. i have only had my deep veins looked at in my arms and legs with an ultrasound. never have they looked into my superficial veins. i have been requesting test but my doctor will not send me for anything. i just had a urine test and bilirubin was found in my urine and two doctors blew it off. bilirubin in the urine is a sign of bile duct blockage which is cause by liver disease and/or pancreatic cancer. if these lumps are clots, its another sign for pancreatic cancer. my mind is racing and i cant get any answers. what test did they run to find your clots?

thanks, Adam

 
Old 10-23-2006, 11:21 AM   #8
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DixieDoodle HB User
Cool Re: Thrombocytosis????? Sorry, very long!

Thanks to everyone that replied. I went to Mayo Clinic last week and have to return later this week for more tests. So far, the Doc's have not found out what is causing my elevated platelets, he is not convinced that it is essential thrombocytosis yet and has not done a BMB yet. During the course of all the tests they did put me through, other things came to light that may be the cause of the high platelets and WBC count but further tests are needed. They did find osteoporosis and possible bladder disease. The Dr. said that he will do a BMB if he cannot find any other reason that my platelet counts are off. I'm only 46 and pretty healthy otherwise. I was very impressed with Mayo Clinic, they seem to really know what they are doing there and I am confident that they can find the cause of my problems. I will be very relieved when they can put a name to what is causing me so much trouble. I spent 3 days at Mayo and I found out more in three days than I did after 2-1/2 years at home! The Doctors here make you feel like a hypochondriac because they cannot find out what ailes you. What happened to the good ol days when you had a medical issue and the Doctor did not know what it was, he would research it! Now if the answer does not come to him immediately, they make you feel like it is in your head and send you to another Dr and so on and so on.... Thanks again for your replies and when I find out anything definate I will post again. I wish good health to everyone!

 
Old 10-24-2006, 07:23 AM   #9
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DixieDoodle HB User
Re: Thrombocytosis????? Sorry, very long!

Adam, BMB is a Bone Marrow Biopsy. It sounds like you need to see a doctor ASAP! I don't know what is wrong with you, but something sounds like it needs medical attention right away. Bilirubin in your urine is not something that should be blown off by any Doctor. Have you thought of finding another Doctor that will take your symptoms seriously? Good luck and please let us know what you find.

 
Old 10-25-2006, 05:05 PM   #10
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adam933 HB User
Re: Thrombocytosis????? Sorry, very long!

yeah, i've been to six doctors. one family practice doc, two internal medicine docs, a rheumatologist, a vascular surgeon and a heart doc. what more can i do? the rheumatogist blew it off first, i told my internal medicine about it and she didnt comment. i feel i'm losing here. i cant get any help and i just get worse.

 
Old 10-30-2006, 10:03 AM   #11
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DixieDoodle HB User
Re: Thrombocytosis????? Sorry, very long!

Gosh Adam, it sounds like you have been to every kind of Doctor with no help. I went thru that and I finely got the answer I needed after 2.5 years of going to Doctor to Doctor to Doctor. I finely took matters into my own hands and had one of my Doctors refer me to Mayo Clinic. If it is an option for you (for me the clinic was only a 6 hour drive), and you can afford to take the time, I would advise going to Mayo. They are very through and none of the Doctors I saw while there treated me like I was crazy. They believed me, the symptoms and what my blood was saying and finely came up with a diagnosis. I probably will be jumping over to the Arthritis board as it appears that I have a uncommon form of arthritis and the blood sympoms I have are due to the Arthritis and thank God, not Thrombocytosis. Good luck to you and I hope you can finely find that answers that you need so badly. And as for all others here on this board, I wish you all continued health and happiness.

Dixie

 
Old 10-30-2006, 12:43 PM   #12
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adam933 HB User
Re: Thrombocytosis????? Sorry, very long!

i'm trying... i live near cleveland so i called cleveland clinic to see a vascular doctor. i got in but i dont have a referral. all the doctors (except for one) in my town keep saying its not my veins so they will not refer me. i hope my heart doc will write up something to refer me to this doctor at the cleveland clinic. my current doctor sent me to a surgeon to cut out one of these lumps. i'm now waiting for that day. i hope its soon. he thinks they are fatty deposits but that doesnt answer why my veins bulge out and cause my arm to turn red. my legs have been turning pink lately with more veins coming to the surface with a lot of stinging and burning. the bad thing is, is that i'm starting to go crazy from all this. its been six months of hell. my doctor tried to put me on anti-anxiety/depression meds but wont refill my xanax that i have been on for 5 years. i told her my anxiety is so high because i cant get any answers and that i take xanax to calm me down when it turns into panic attacks. i have been suffering from panic attacks for 8 years and xanax has always helped me get through them. i told her i dont take them daily, only when really needed. so she told i dont need them at all and i need to start taking lexapro. i just lost a bunch of weight, weight put on because of anxeity meds over the years, i dont want to gain it back. i just dont understand why doctors just want to push pills to cover symptoms instead of trying to solve the problems.

thank you for listening to me. take care, adam

Last edited by adam933; 10-30-2006 at 12:45 PM.

 
Old 11-11-2006, 12:01 PM   #13
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Amy 333 HB User
Re: Thrombocytosis????? Sorry, very long!

Hi
I am new on the board. I am a 27 year old female diagnosed with ET 2 years ago. I have since then been taking hydrea as my platelet count was over 1100 000. My platelet count is now in under control. My problem is that now i am trying to get pregnant and my Dr advised to stop hydrea 2 weeks before ovulation. This worked out and i immediately got pregnant however i miscarried at 8 weeks. The cause was not known. Is miscarriage more common with this condition????. Is hydrea safe during pregnancy???
Each time i stop hdrea to try to get pregnant my platelets go up and it takes me months to get them down again.
I live on a small island with only 1 haemotologist available. Locally i am the only person under 60 yrs with this condition and it just feels awful.
I would appreciate any advice.

 
Old 04-17-2008, 10:14 AM   #14
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Smile Re: Thrombocytosis????? Sorry, very long!

hi.
i my platelets have been going up since the year 2005 and i have began to get very worried. My GP refered me to a hemotoligist i have been seeing on now since january 2008. I had to have a bone marrow biopsy i then had to go back for my results three weeks latter they dignosed me with a myeloproliferative disorder. My type is thrombocythaemia and i only just found that out today. I have been back and fourth to my dotor surgery all week as i have been very worried it was a slow growing cancer. The docors kept on telling me the same thing other and other again. Saying that they can not say it aint cancer but they can not say it is caner. I am only a teen and was not get much sleep through this. I went to see a GP today and he did not know much on the subject as he is not a specilist in this area.He did however print me off a letter that my hemotologist sent to my GP. This letter contaned the information saying that ion is negative. The GP told me that means it aint cancer he said there is a chance i could get it but it is very unlikly. I am back at hospital on monday. However it would be good of you if you could tell me any thing else. How will it effect me how will i be when i start having to inject interferon. i have been ill and spent last friday in hospitsal. i am very unsure about the effects off this disorder. i am not sure on what will happen to me. My Gp has given me a sick note for 8 weeks of college. I have been to the doctors at least 8 times in just over a week trying to get more information but i just get told the same thing. plase could you be a great help and help me understand more thank you jadey91

 
Old 04-23-2008, 09:34 AM   #15
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Smile Re: Thrombocytosis????? Sorry, very long!

I just recently got diagnosed with Thromby.... as well. I have been put on Hyroxuria and it has helped get my platetlets down signifigantly. I also developed 4 blood clots in my left leg so I will be on cuomadin for awhile. I havnt had any really bad side affects though. Other than the burning in my hands and feet and what I call the "hee bee jee bees" in by blood. Do you have that? I agree with you the docters do not tell you much. Have they tested you for the Jak-2 chromosone? I tested positive, which means it is genetic and could have been passed on to my children(I have 3 young kids). At first they thought it could be leukemia and did what was called a FISH test, it test for the Philedelphia Chromosone which 80-90% is present with CML or a form of leukemia, which is very very treatable by the way now with a miracle drug called GLEEVAC. Good news is while it is rare, most people live a very full life with this disorder. Good luck!:

 
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