Not getting anywhere!
Posted , 7 users are following.
As you all know last week my Heamotologist said that dizziness, painful joints and hands are not a symptom of Polycythemia, I should visit my GP it's obviously something else, saw my GP last week spoke to him in great detail about my bloods and symptoms nd menaporse, he told me to go away and think about it, me thinking that there's a light at the end of my tunnel and maybe estrogen is the answer! I then went back today, I'd made my decision about estrogen I was going to give it a go, he was all ready to write the prescription and then I mention my blood levels, stopping I his tracks he said sorry if your blood is at a polycythemia level even if you haven't got to a diagnosis yet I'm risking your life by giving you estrogen!!! He then proceeded to say he probably thinks my dizziness isn't the menaporse but my blood and told me to take these tablets for dizziness three times a day, they might not work because if your bloods are rising it's only a matter of time before you need other treatment, he said I can't have estrogen it might induce a blood clot with my bloods bed high! So back to square one! Frustrating x
0 likes, 21 replies
keith28441 julia15874
Posted
Hi Julia & Kevin
Concerning the bone marrow aspirations not being carried out on PV anymore. This may be true in some instances i.e. depending on the country you live in or perhaps the hospital that you may be attending but I can only say from my own experience here in the UK that at my hospital they do still carry out bone marrow aspirations especially if the JAK2V617F and exon 12 come back negative. Whilst I was awaiting my results, my Haematologist told me that if my tests were to come back negative, he would then proceed with the aspiration. As it happened, it came back positive for JAK2V617F, so it wasn’t required. However, I do know of one gentleman at my hospital that underwent this procedure and he has since been diagnosed as primary PV. Within our Haematology unit, they have a dedicated room for bone marrow aspirations. It’s particularly effective on checking on the hypercellularity (abnormal increase in the number of cells present) based on a persons age and the work the laboratory undertakes, I am told is quite thorough.
Respectfully
Keith
julia15874 keith28441
Posted
My Heamotologist has told me if my exon 12 is negitive he wants to do a full red cell mass test and a BMB next to completely know for sure its not primary, only because no secondary issue hasn't been found, the only other thing happening of any consequence is the menaporse but both my GP and Heamotologist say my red blood wouldn't rise so much during the menaporse otherwise every lady would have the same problems. My bloods are still rising, he's was sure I was negitive for the JAK2, as I've never had a blood test that's gone down since having them taken two years ago, it doesn't matter what time of day, Infact my last two were on a afternoon so I'd be better hydrated. I'm a strange patient, I'll get to the bottom of things I just need to be patient and trust the Doctors and you never know they may find a secondary issue and I'll be right as a bobbin, because I really don't want PV, you guys really have a lot on and feel for you all and admire your bravery even when your really low you have advice to give to likes of me, who can be too inquisitive at times. Jxx