Bloods even higher!
Posted , 8 users are following.
I'm devistated, just been up to the hospital and they told me my bloods are even higher than 6 weeks ago! I was convinced I wouldn't have this desease but they are not letting up! But can anyone tell me what my platelets are reading the nurse told me they are 11.5? But if this is meaning 115 then they are too low? But then I'm wondering if they could be 1150??? Which would definitely confirm PV! Can Anybody tell me? X
0 likes, 18 replies
angela_o..o julia15874
Posted
Hello Julia. Do you have the name of a contact nurse at the hospital who has been assigned to your case? I have one. I have only phoned her once but she was incredibly kind and knowledgeable. I suggest that you ask someone like that to explain to you what the readings mean.
My platelets are too high, my consultants say, and they are in the 600s and sometimes the 700s. I don't know what how the readings are arrived at. Maybe I should!
julia15874 angela_o..o
Posted
The thing is she was very naughty telling me in the first place as I called to have another blood test for my EPO levels as the doctor didn't take enough last week, and I asked casually, she wrote them down and I thought well 11.5? Which is low if it's 115 as we know the healthy scale is 140-400? Then thought perhaps it 1150 which is extremely high, I'm now worried because my hemocrit is way above 50 now and heamoglobin and red blood cells have risen too again. I don't want to ring her as she might get into trouble, but thought you guys might be able to bring a bit of light to the situation. xx
julia15874
Posted
jessie2150 julia15874
Posted
A normal MPV has a range of 7.5-11.5 femtoliters
Julia I can't answer your question but I think angela's suggestion of ringing the nurse is sensible.
The above MPV quote makes 11.5 (if that is the measurement used)
sound within normal?
Hope this helps.
julia15874 jessie2150
Posted
👍 thank you xx
ellen68007 julia15874
Posted
Hi Julia! I know you don't want to get your contact nurse into trouble but as long as you speak directey to the one that told you your levels then I think it should be just fine. Its better to know then to get yourself all upset with not knowing what the actual reading was. Has the hemotologist mentioned any other upcoming tests? When is your next appointment? You may want to ask what is next to get to a diagnoses. I know it's a horrible wait! It took me forever to finally get to where I am now but I am still have to have complete blood test every 3-4 months. Just to keep an eye on my HCT which was 49 on my last reading. At one point it was up there so I had to have a couple of vanesections done to lowere my level. My Doctor said 49 is high but not high enough to do the blood letting. Hope you get some clarity.
julia15874 ellen68007
Posted
Thank you, she was going home after she took my blood, so I'll try her tomorrow, I don't have another appointment with him, I've to wait until he phones, As I've to wait for my EPO blood test and jak2 exon 12 results and then I'll see him again, he was talking about a BMB and a full red cell mass, but he won't if my Jak2 exon comes back positive and EPO is low, now my bloods even higher, I'm sure he will ring me at the latest next week, I was glad she give me the results of my full blood count but in away I understand why he would want to ring me because I've loads of questions again and obviously in a strange place to ask him until he knows my results. Jx
kevin81762 julia15874
Posted
Hey Julia... It sounds to me that your number for you platelets is actually at the bottom end, not the upper end... For an adult male, its 150 - 400 x E9/L... I'm not sure what it is for females, but its probably not very different... But then again, the type of measurment used can very between hospitals in different countries. From what I gather, if your EPO is normal, most hematologists won't even test you for the jak2 exon 12, as vertually all of these patients have a sub normal EPO level...
julia15874 kevin81762
Posted
keith28441 julia15874
Posted
Hi Julia
Although raised platelets and white blood cells are only found in people with primary polycythaemia, not everyone with primary PV has them. I do unfortunately. So, should you be diagnosed with primary PV, it wouldn’t be “unusual” or indeed uncommon if only your red blood cells were affected at this time. You could of course still be diagnosed with secondary polycythaemia, which does only affect your red blood cell readings. With this said, your low platelets also known as Thrombocytopenia, can be caused by other non-related circumstances. Your auto immune system can affect your platelets by you having a viral infection, vitamin deficiency, rheumatoid arthritis, any prescription drugs you may have been prescribed etc. Autoimmune diseases, such as lupus and rheumatoid arthritis can cause the body's immune system to mistakenly attack and destroys platelets hence having a low platelet count. That’s not to scare you or suggest you have any of the conditions I have mentioned above but there are so many variables as to why your platelets are low. You have been worried and stressed lately waiting for a diagnosis and this too can take its toll on your health i.e. feeling run down can also impact on your immune system. Did your Doctor check or make any comments regarding your spleen? – Concerning the nurses comment regarding your platelet levels, my understanding is that 11.5 is 115. Sorry if I am incommunicado tomorrow but I am at the hospital myself for a pre-operation assessment.
Take care
Keith
julia15874 keith28441
Posted
sharon49391 julia15874
Posted
i was diagnosed in April 2015 with PV and Thrombocytosis so my blood levels were up and also my platelets. I had about 10 venesections in 10 weeks and now 3 monthly. My hematologists aim was to reduce my haematocrit level to 43 which it did. However, my platelets have been increasing steadily over that time and they are now over 900. The dr has now put me on Hydrea to try to reduce that number. I have not had any real symptoms since being diagnosed and after taking the Hydrea for 1 week have not seen any side effects. Like you i felt devistated when i was diagnosed but i am feeling fine and living normally. Good luck with your diagnosis.
harrishill1 julia15874
Posted
Hi Julia. Everybody seems to read the blood counts differently. You shd be seeing a Hematologist ar least once per month at this diagnosis stage. If you haven't seen one, you shd be referred by your doctor. The hematologist will then have your blood tested every month and his nurse will then call you about the results. At first you may have to have blood removed if your red blood count is too high. Later on, you will be given meds.I do know that my hematologist likes to keep my blood count below or at 142. I was tested for the jak2 gene mutation, which causes PV. My test was positive. However, there can be other things that can cause secondary PV.
?I hope this info helps you. I was diagnosed almost 4 yrs ago, and still feel good. I am 74 yr old female, and get daily exercise. This disease can be managed and you caN LIVE OUT A NORMAL LIFESPAN. You do need a hematologist.
?harrishill
julia15874 harrishill1
Posted
Hi Harrishill, I am under a Heamotologist, basically two years ago my heamoglobin, haemocrit and red blood cells started to rise and every blood test I've had which is seven in total my readings have risen, I'm currently at the highest I've ever been according to my last blood test which was last Thursday, I'm not feeling good at all, but my Jak2 gene was negitive, he the wanted me to have a CT scan which I saw him last Thursday and all of that was clear, he then diverted his attentions back to primary and gave me an EPO blood test and another full blood count with a jak2 exon 12 mutation test, I had all my blood tests done last Thursday, but yesterday they called me back because they hadn't enough blood for the EPO test, that's when I asked for my full blood count results, the nurse told me she shouldn't do this but as its the Heamotologist specialist that should but she wrote down my last results, they have risen considerably! I'm now really worried that's it's definitely primary, I was stumped though with the platelet reading, however I've found out it's the means platelet volume that's 11.5? So that's quite high too. Thank you very much everyone for answering me, I'm sure I'll know soon xx
harrishill1 julia15874
Posted
Hi Julia. I'm glad your hematologist is working on the diagnosis.- sure he/she will find the problem. If your red count is too high usually the hematoligist will have some blood removed to bring the red count down. (about a pint usually). If he hasn't done that, then your count probably isn't too high. It is so hard to read the numbers they use on the tests. I would ask him next time, if the red count its too high, what shd it be? I believe it shd be about 142. (normal count). Anyway, I will pray for you to get a definite diagnosis and treatment.
harrishill
julia15874 harrishill1
Posted
Hi Harrishill, my red blood cells have risen so much over two years this is what it was to last week:- I've had ones In between that have risen slowly.
Haemoglobin
5/9/2014. 11/3/2016. Last week
158. 164. 179
Haemocrit
0.468. 0.49.0.54
Red blood
5.41.5.55.6.01
My platelets have risen too and are now above the 400 mark, it's risen slowly over two years. I think after my last reading my heamocrit is too high to not give me a venesection but until I speak to him again I don't know, I think the reading before was okay to leave me until he get a diagnosis, I'm still waiting for my EPO and JAK exon 12, I don't smoke and my CT was clear do we will see
julia15874
Posted
There was one blood test I had inbetween March and sept in July, he did tell me what they were they were higher than March but not as high as last week I've misplaced where I wrote it down, so there's no letting up or it going down at all, the only thing that's happening is the menaporse to course a secondary reason. X
jessie2150 julia15874
Posted
Julia I think it's a good idea to ask for a print out of your results every time. It is so difficult to keep a record otherwise and everything is recorded so easy for a print out to be given for your own use.
It also makes it so much easier for you to refer back to previous results.
I think we need to be informed of our conditions.
j xx