Hello everyone! I finally went to the hematologist on Friday, my hemocrit is been around 46/47 hemoglobin 16/17 and RBC 5.6 so because I have been feeling sick with fatigue bone pains rash for a while I thought I had some kind of blood disease manly polychythemia. Well the hematologist said I am on the very upper high of normal and my platelets and WBC are normal so he said he doesn't think is PV! I was actually hoping it was as to at least give me some piece of mind and someone mentioned on here that women hemocrit are better in the 42 range! So he refused to do a BM test . Should I seek another opinion??
Hi Lidia I would seek another opinion if I were you. Do you know if you have the jak2 mutation? Or the CalR? Your hematocrit is a little high and you are having symptoms that are very familiar eg. Fatigue, bone pain & rashes. So if he didn't think you have Pv, what does he think you have? Yes, a woman should have an ideal hematocrit of 42. So, something is going on. I'm not a dr. But I would definitely seek another Drs opinion, preferably a hematologist. Good luck. Zap
That was the hematologist lol!!
What kind of rash is PV associated with? I have little raised red dots on legs, I thought it was petachiae but it said no, it doesn't itch either...
He said I am at higher end of normal, did you have high platelets too? I hate to seek a second opinion, my gp also was reluctant to send me to hematologist, after waiting for what it seems forever I went to the appointment and was sent on my way after he reviewed with me the bloodwork , said I didn't have to repeat any blood work and that I did not have PV! He told me numbers would be more elevated than that and my spleen would be enlarged. I am starting to be fed up with medical professionals in general! I also lost weight so I was worried it could be something more sinister but he dismissed me as I don't fit in all the criteria for PV!
Hi Lidia I don't know what kind of rash, but I've read many people with Pv complaining of them. Possibly someone on this line who has had or has a rash could describe it to you. I found my Pv accidentally cause I needed sinus surgery and the dr required a complete CBc prior to surgery. My platelets were 490, slightly elavated as the max is 450. After I healed from the surgery I went to my gp who referred me to a hematologist who did further testing and the rest is history. Positive for jak2 mutation. Funny you should say you lost weight cause so did I prior to dx without trying. It's easy to get fed up with Drs. They're so dismissive. Until you meet "Mr Right Dr.", it's almost like trying to find a
Sorry, don't know what happened, to continue its almost like trying to find a suitable husband. I wish they had Tinder for Drs. To the left, to the left and then there he is "the one". I've only had 3 Drs in my whole lifetime that I worshipped, cause they got it right and really gave a damn. 2 saved my life. I've had other serious conditions and got lucky. With this rare, strange disease, nobody knows much about it. Hopefully, this dr you saw is right and you don't have Pv. Time will tell. Zap
Hi Lidia. Yes your blood count is a bit high, but not high enough to treat. If I were you, I'd just wait a couple of months and see if there are any more symptoms. As for myself, I had blood red eyes, and it was very scary. Also, everyone commented my tan was red colored, and I had night sweats. My doc said it was allergies. When I had a complete blood count referred by my new doctor a yr later, I was finally diagnosed with PV. If you still have many symtoms and night sweats in a couple months, ask to be tested again (CBC).
Olá Lidia.
Bem, você já recebeu algumas respostas excelentes até agora e eu concordo com o que foi dito. Não acho que nenhum médico, não importa quão experiente, se oponha a um paciente pedir uma segunda opinião, especialmente para dissipar qualquer ansiedade que o paciente possa sentir. A PV não é uma doença do dia a dia e só recentemente ela tem sido submetida a algumas pesquisas e novos medicamentos introduzidos. Isso está em andamento e deve haver incerteza entre os médicos sobre o que é, uma doença muito rara. As coisas estão progredindo, mas ainda há um longo caminho a percorrer. Se mais testes simplesmente confirmarem o diagnóstico original, então certamente, nada é perdido, mas você estará com a mente mais tranquila.
Boa sorte.
Peter.