Recently Diagnosed
Posted , 6 users are following.
Hi everyone!
I'm reaching out to see if anyone has had a similar situation. I was just diagnosed with P vera today but it was purely based off my symptoms. I've had a high platelet count for the past 3 years, but not high enough for a bone marrow biopsy (not over 750). First they diagnosed me with thrombocytosis and now they think p vera is what has been causing my thrombocytosis..
However, my RBC count is actually below normal (3.95) so .5 below. And my hematocrit is a tiny bit below normal as well. Only thing high is my platelets, lymphocytes and monocytes.
Today my doctor told me I tested negative for p vera twice on blood exams but that he still thinks it is that because I have a high platelet count, and sometimes I itch after a shower (not always and not a lot). He also asked me if I ever feel out of breath and I said sometimes but not often maybe just once every 1-2 months. He also just told me to treat it by taking a baby aspirin a day and told me to go back next year for my yearly platelet check up.. I see most of you go a lot more often than that so that's weird to me. I'm pretty confused about his diagnosis so I'm getting a second opinion.
Thoughts?
0 likes, 7 replies
Zapamania RMederos69
Posted
Hi RMedros the normal range for platelets is 150-450. You say you have itching after a shower, which is a classic symptom of Pv. Also shortness of breath. You need to lose this dr and get a Cbc including if you are jak 2 positive or CalR. 1 year is too long for you. You might have Pv or secondary Pv which means the Pv is being caused by something else going on in your body. If you can see an MPN specialist, please do. Many Drs are very uninformed about this disease because it is so rare. Please don't wait a year. Zap
justin23294 RMederos69
Posted
. R mederos69.
?I think that you should go to a hemotholagist. Your platlet count is just as mine was after my lung blood clot 2 years ago. Taking a bayby aspirin is a good idea but there is a reason your platlets are a little high.A bone marrow aspiration will tell weather you have primary thrumbocythimia or Jak2 or other desease as I was diagnosed. You are at risck of a blood clot. My platlets are down to 450 after beeing treated with Hydruxyurea .Hopefully your aspiration will come out negative. As I understand, if you never had a blood clot, some doctors just treat it wth just aspirin. I take a bayby aspirin, 5 mg of eliquis and 1000mg of Hydruxyurea per day. So far I feel Ok. The only thing that happened in the last 3 months is that i compeletle lost the taste in food. The dr's cant figure out why. it's been hell! Maybe its my age. I'm 81. Please excuse my English. For some reason, the site does not allow spell check. Lots of luck and keep us posted.
peter98873 RMederos69
Posted
RMederos,
I will just expand a little on the advice you have already received on this forum. Platelets assist in the clotting of blood and the normal count for these is 150 to 450
(in thousands) Red blood cells (or erythrocites) will carry oxygen within the body. These are an important feature of the tests for PV. A Haematologist is the accepted specialist in dealing with PV and will require accurate information on these and other features before deciding on the cause of your illness and any treatment which is recommended. Aspirin is prescribed to thin the blood to help prevent excess clotting of the blood. These tests can take a little while before a conclusion is reached to treat you and this is prescribed solely for you. Each PV patient needs this individual testing as each is biologically different. PV is a very rare and serious disorder and if diagnosed requires regular supervision by the specialist. PV is included in a group of diseases known as MPN's each of which is somewhat similar in concept. There is no known cure for any of these although effective treatment is available. You will understand that PV requires serious analysis and therefore you should visit a Haematologist as soon as you can and have the tests carried out. It is in your interests. Do not hold back on any questions you have for you have much to understand and the specialist will be pleased to assist I am sure. Best of luck. Peter.
RMederos69 peter98873
Posted
Thanks Peter!
The doctor who diagnosed me is among the best hematologists in Miami which is why I'm rather confused.. he diagnosed me with thrombocytosis about 2 years ago and told me that was the reason for my high platelet count. According to him I tested negative for PV twice on bloodwork but because of my symptoms he still things PV Is what is causing my high platelets.. although everything else is stable I'm not sure why he would just tell me to go again next year and call it a day. I asked to go in 6 months instead and he said okay but I plan to go again soon just so I can understand better.
peter98873 RMederos69
Posted
I understand your predicament but would say that PV is often difficult to diagnose initially until perhaps, it is more prevalent. I had PV symptoms many years before I was actually diagnosed, so just maybe your PV is not advanced yet and is therefore difficult to diagnose accurately. Some of the symptoms you describe are, as have already been stated, associated with PV and possibly these will become more apparent as time passes. It could take months or even longer. I suggest you just keep an eye on things and see your haematologist when needed. You say he is a fine doctor so there is no reason for him to prevaricate as I see it. Your symptoms might just be associated within another ailment, as often proves to be the case. Stay with it. Best wishes.
Peter.
Peter.
lijuan7002 RMederos69
Posted
Hi RMedros,
Definition of PV(WHO):
Male:
A1: Hb >18.5 g/dL A2: RCM(Red cell mass) > 36ml/kg mutation (+)
A3: JAK2 V1617F mutation(+) A4: splenomegaly A5: SaO2 below 92%
Female:
A1: Hb >16.5 g/dL A2: RCM > 32ml/kg
A3: JAK2 V1617F mutation(+) A4: splenomegaly A5: SaO2 below 92%
B1: low serum EPO level B2: EEC grow B3: bone marrow abnormal
B4: platelet count > 400 *109 / L. B5: WBC > 12*109 / L
B6: LAP>100 B7: B12> 900 pg/mL or B12<220 pg/mL
If you have PV, your conditon may be 3A or 3A1B or 2A3B or 2A2B or 1A4B or1A3B(possibile)!
A high platelet count can lead to excessive, dangerous blood clotting !!!
I think the new generation IFN-a2b treatment is a good choice for your condition!
Best wishes
Zapamania RMederos69
Posted
Hi RM69 your platelets are high. The is primary Pv which means you have to have the Jak2 mutation and secondary, no Jak2 mutation. Secondary results from something else going on with your body like sleep apnea or do you smoke. You're describing Pv symptoms, the ttching and the shortness of breath. You definitely need a different dr., an MPN specialist if at all possible. It's a very confusing disease and you should get to the bottom of it. Good luck. Zap