Newbie

[Chrissie10]

I am currently being tested for possible Polycythemia. I have had raised Hct and Hb etc and have 4 venesections and am on 75mg daily asprin, I have been tested for Jak2 which is negative, so they are now considering a bone marrow test next. I have just had Serum Ferritin and Serum LDH results which I am trying to find the "normal" range for and finding this info different to find - anyone out there have any suggestions on where to find this info? Thank you Chrissie

[Mwalimu]

Just looked up Serum Ferritin on Wikipaedia (maybe not last word in medically accurate info but I usually understand it!) and it gives the normal range there. Try the same for the other. At least it's a start.

[Aime]

Hi Newbie

Have you tried the MPD website, not just this forum. If you email them direct, Maz can perhaps help with this information. I have PV, Jak2 negative. My ferritin test was at low range of normal - 9.2. GP said this was okay because of the PV. You are quite right to seek out information, because the more you understand about your condition, I think the easier it is to live with. Don't be scared to go to your haematology appointment armed with questions - I do. You will get a lot of support on this forum. Take care, kind regards Aime

[mark382]

I find it very interesting how different doctors go about diagnosis. When I had my first blood test GP said straight away I had PV. My JAK2 was negative. My haematologist sent me for scans to check for tumours on liver, kidney and size of spleen, thankfully all normal and ruled out secondary PV. Never mentioned about bone marrow biopsy. Just have venesections as and when and on aspirin. All haematologist says is I have some form of PV. Been diagnosed about 4 years. The whole thing is still a mystery to me. Just adopt the attitude that I didn't do anything to cause it, can't do anything to make it go away and so stuck with it.

Regards Mark

[BookerBay1]

Hi Newbie! I'm pretty new here myself but like Aime says, I research in between appts and try different foods, etc (doesn't hurt totry) and then go in armed with my note pad filled with questions. I'm diagnosed with ET and JAK2. I had forgot about the jak because I've been trying to find ways to lower the platelets. I'm not on any meds. Good luck and be well. Research and put the pieces together then ask!

[sparko35]

Hi

Like a lot of people on here i have suffered from most if not all the symptoms of PV had around 5 venesections and on asprin have now been told i will need weekly venesections along with blood tests in between until at desired range. I have had loads of blood tests and scans but still no nearer to a confirmed diagnosis until i had a bone marrow biopsy not the most enjoyable experience but i have a confirmed diagnosis of PV jak2 negative so i would push for the bone marrow biopsy

[Chrissie10 in reply to sparko35]

Hi Sparko, Thank you for your reply. I had 3 venesections, then 3 months to wait to see consultant again where he ordered more blood tests which showed Haematicrit had gone back up to 50 again, so more venesections and now I am waiting again till November to see Consultant again. He did mention possible bone marrow test, so just waiting to see now. I have been taking the Asprin for 5 months now and really do suffer with indigestion most of the time, but I suppose thats just the way it is for now.

[sparko35]

Hi Chrissie10, I think the worse thing is not knowing i found every time i saw the consultant i was none the wiser to what i had and that made me feel worse now i know its like a real weight of my shoulders and i can get on with my life knowing what changes to my life style i need to make to stay as well as i can. Hope you find out soon it does make a difference keep well.

[Chrissie10 in reply to sparko35]

I totally agree, would really like to know so I can do the same as you. I watched the you tube video that was posted on here and found that very interesting with regard to which if any medications the Mayo clinic advise. May I ask how old you are? I am 48 and located in the North East of the UK

[sparko35]

Am 48 man live in Milton Keynes Bucks. I watched those video's too my consultant did ask if i really wanted to take cancer drugs told him i was ok with venesection and asprin at the moment. Seem to go 3-4 days before i feel really good and then down hill till i need another one so only time will tell as to when i may have to consider any medication