Another question guys?
Posted , 4 users are following.
As you all know I'm under investigation at the moment and today I'm looking back at my blood results right back from 2014 to present, looking closely my red blood cells, they have risen slowly since September 2014, but you all know that Infact non of these blood tests would of been done if it wasn't for me feeling unwell and thinking it was the menoporse, anyway I'll get back to the question, my white blood cells have stayed well within a normal range at roughly 7.00 with not much of a change, however my platelets have risen considerably in September 2014 they were 269 and now they are 385, as we know 400 is the highest for ladies in the UK, I know at 385 they are still within normal, but normal to high, I'm thinking if my platelets get higher than 400 along with my haemoglobin, red blood and haemocrit would that indicate that I'm primary rather than secondry surely, it's my understanding that it's just your red blood cells that are risen in secondry? Or please correct me if I'm wrong? Jx
0 likes, 8 replies
keith28441 julia15874
Posted
You are correct in that platelets (and white blood cells for that matter) can also be raised in primary polycythaemia. It is only the red blood cells that are affected by secondary polycythaemia. Raised platelets however can be caused by a number of other issues for example; infections, inflammation, iron deficiency and even severe exercise can cause your platelets to be raised. I recall that your last Haematocrit reading was .61? That is high and suggests to me that if you don’t have primary PV, then there is a reasonable chance of you having secondary but I am no Doctor.
Although I had many of the symptoms associated with polycythaemia dating back to 2010, my blood counts all came back within range at that time. Even in December 2014 when I was getting migraine with aura, fatigue, plethora etc. my blood tests even then came back OK. It wasn’t until January of this year when I had some more done that they came back markedly raised, enough in fact for my GP to refer me to a Haematologist. Only then was I was diagnosed with PRV. I am JAK2 Positive. I guess what I am saying is that Polycythaemia is a very slow progressive condition and diagnoses whether it be primary or secondary is not a straightforward process. It sometimes requires perseverance as blood results can tell a different story over time. I am a case in point. I hope you get a diagnoses soon Julia.
All the very best to you.
Keith
julia15874 keith28441
Posted
Hi Keith at first I was really impatient and thought why have I not received a label for this yet? However I'm totally understanding why this is a waiting game, I feel that my specialist is waiting for my bloods hopefully to go down, or rise more, my husband and I did a chart yesterday and it was only then my platelets jumped out, it's a dramatic rise, obviously at 385 they are not at a level of concern yet but it's noticeable that when my red blood cells jump up so do my platelets, my white blood cells have remained at the same level between 6-7, my haemocrit was at 51 not 61 (it was probably a miss type) but 45 is the high mark for women, however I don't know my last results until Thursday when I see my Heamotologist but when he phoned me he said all my results were slightly higher, I'm going to ask him for a venesection if my CT is clear, I feel Shocking! Constant headache and the tiredness is horrendous, if he agrees it would be interesting to see how long my bloods rise again afterwards, I think personally after talking to people my haemocrit should be below 45? And perhaps if I never get a label conclusively that's fine, as its seems going through the many blood tests to find a abnormal gene is a needle in a hay stack and I don't want to be obsessed but I need treatment to feel better. Jx
keith28441 julia15874
Posted
I do feel for you. It’s not pleasant having to put up with all the symptoms and feeling rotten, let alone still not getting a diagnosis. Yes, maintaining a Haematocrit of 45% or below is the goal especially in men although for woman, some Haematologists suggest 42%.
I hope you get a diagnosis soon and that you start to feel better.
Take care
Keith
ellen68007 julia15874
Posted
jessie2150 julia15874
Posted
Hi julia. Sorry you are suffering so many symptoms. I've my CBC for 14 years and so I looked at the platelet counts. It has been up to 320 but between 200-270 but they fluctuate with me so I think that's what they do - fluctuate.
Your heamotologist will see everything in your blood counts and make a diagnosis, or ask for more tests if things aren't clear.
I don't have a diagnosis myself except "probably secondary" but I do have polycythaemia.
Keith gives good advice, white blood cells also vary on my CBC I think that's to do with possible occasional infections etc.
May I ask if you are still menstruating or going through the menopause, could that affect your readings?
I've no medical knowledge, only replying with a bit of personal info if it helps.
best wishes j
julia15874 jessie2150
Posted
I had a hysterectomy four years ago, it was that reason I went to the doctors in the first place as I thought I was going through the menaporse because I was getting palpitations, dizziness tiredness, pins and needles in my hands and feet, I first went to see my GP September 2014 because I didn't feel right, then they did a full blood count and a menaporse test, the test for menaporse came back negitive but my full blood count was showing my red blood cells elevated then they were just over, my haemoglobin was at 15.5 and haemocrit was 46 something and my red blood cells were 5.1 all just over, the doctor told me that I was probably dehydrated and it was nothing to worry about, I had another blood test done in October of that year and my readings were simular but slightly less. I forgot about it and carried on but still felt rubbish the a year went by and again thinking my menaporse might show now and they can give me some oestrogen and I would feel better, same happened my full blood count was high and higher than the year before and my menoporse test was negitive I had another one done November 2015 them March 2016 then July 2016 and My latest one August, all these blood tests have shown my bloods getting higher every time doesn't matter if I have my bloods done in the morning or afternoon they always read slightly higher than the last one plus my platelets do too except the first two I had in 2014, my platelets have risen more in two years than my red blood cells but my red blood cells are higher out of range and my platelets are just below, I think for me it's a waiting game if my CT scan is clear. Jx
jessie2150 julia15874
Posted
julia15874 jessie2150
Posted
I get my scan results on Thursday this is my platelets pattern
July 2012- 205 all red blood normal
September 2014- 234 red blood started to rise
October 2014- 255 red blood dropped slightly by platelets carried on rising
September 2015- 265
November 2015- 279
March 2016-311
July 2016- 385
Last one in August my Heamotologist took and I don't know what readings other than he said they have risen slightly, so mine don't seem to fluctuate just rise? Very strange but at 385 still within normal levels yet, but I'm wondering if I'm in some early stages yet and only having a hysterectomy got me to the doctors in the first place maybe I'd be ignorant to this otherwise, the other thing is I've had every bug going this year but my white blood cells have remained between 6/7, so what ever it is it's effecting my platelets as well as my red blood cells but not my white blood cells x