Secondary Ploycthemia
Posted , 5 users are following.
So I looked at my paperwork and my doctor put me down as secondary my levels before having a bloodletting as my husband calls it was :
WBC 12.62
RBC 5.37
Hemoglobin 15.2
Hematocriy 47.2 and
ABS Neutrophlis 8.44
After a lot of research and having Thyroid cancer in 2011 I've learned a lot of things....I was given i131 radation and way over 100Mci worth like almost triple that amount, that this is what caused my polycythemia...I am an ex smokerbut quit 6 months prior to being diagnosed, my maternal grandmother was diagnosed with the disease and the JAK2, I believe I should fall under Familia before secondary...and it shows more that I got this because of the amount of radaiation I had, and that it increases my chances of getting bone cancerwith just having 100Mci of i131....sorry it,in rambling.....want to make sure I'm documented the right way so they take this,more serious....please help
0 likes, 17 replies
joycem leticia92303
Posted
Hi Leticia, sorry to hear that your past illness caused secondary polycythaemia. I have read that PV is not supposed to be hereditary but reading on various forums, I have found that it certainly can be. Well done on quitting smoking by the way, I'm glad I gave up when I was 30. Make sure you keep on at the professionals until you get the answers you need. Good luck. Take care, Joyce
julia15874 leticia92303
Posted
Hi I'm still under diagnosis to weather I'm primary or secondary, still waiting for my JAK exon 12 mutation test I'm hoping its next week (I think it will be negitive because my EPO was normal at 8) so they will put it down to secondary, but personally I think mine is genetic too because my grandfather died at the age of 44 with a blood clot, in those days they didn't call it Polycythemia but "bad blood", and my mums always had problems too. X
joycem julia15874
Posted
Hi, I got the primary diagnosis whilst I was in hospital but it took 4 weeks for the JAK2 result to come through. Is the EPO the platelets? The first time they were mentioned to me was 3 weeks ago when I went for a blood letting because they were high. I'm thinking that there may be a PV connection on my Dad's side of the family as I always remember my Grandma and my Dad having a ruddy complexion when I was little. Prior to being diagnosed I looked like I'd been out in the sun too long!
Hope they sort you soon.
Take care, Joyce
julia15874 joycem
Posted
The EPO is your erythropoietin, the protein that comes from your kidneys to tell your bone marrow to produce more red blood cells, if it's low it can indicate that your erythropoietin is switched off or not wanting you to produce any more red cells due to your bone marrow making too many which is one of the minor criteria for PV, if it's normal or high it can indicate secondary, if it's low or normal low then it can indicate primary, most people with PV have a low erythropoietin level, mine is normal at 8 which would indicate towards secondary. Have you had a EPO or JAK exon 12 test? Plus it's interesting to know that if u have raised white and platelets as well as red then it can indicate more towards primary, I only have red cells that are raised. Hope this is helpful x
leticia92303 julia15874
Posted
I had my JAK2 test done and she said,it was negative, I have not been able to view that test score. I did have a EPO test and it was at 6.8 which I would say if anything I would be primary and not secondary. I go see my hemotoligst first part of Nov. After asking her several questions and asking why she put me down as secondary I will make my decision if I need to get a second opinion.
julia15874 leticia92303
Posted
Usually when the EPO is low it's like 1.2 or three, 6.8 is normal, mine was 8, it's still not meaning your not primary though, he might want to give u another mutation test the JAK exon 12 and BMB perhaps to diagnose for sure. My Heamotologist hasn't ruled out primary yet with me, if the exon is negitive it's a Red cell mass test and BMB to confirm for sure but I'm personally thinking my case is secondary (fingers and toes crossed) and they won't find a reason, I've had a CT and that was clear. Xx
julia15874
Posted
Ps are you in the UK? If so where and who are you under, u can message me if you don't want it public, the thing is if she's good I might be looking for a second opinion as my Heamotologist says my dizziness, painful cold hands and tiredness isn't Polycythemia, my red blood cells are currently on my last blood test 6 weeks ago were heamoglobin 17.4 heamocrit 0.53 and red blood cells were 5.66 I'm a bit annoyed he hasn't venesectioned me as I feel dreadful a lot of the time and to say my symptoms arnt poly, when I've learned most people on here and other forums have the same symptoms. X
leticia92303 julia15874
Posted
I'm in the US, and as soon as my levels hit 14 she has me go in for a bloodletting. I as tracking that fatigue, tiredness, achy joints, where symptoms of PV....the cold hands maybe due to swelling of joints which happened to me, butvi was in pain with a flare up of my joints....my hands where ice cold but exremely red. I'm trying to figure out if my pain in my hands where I get shocked at times if I pick something up wrong.
keith28441 julia15874
Posted
Part of me is thinking, who am I to challenge the wisdom of a Doctor or Haematologist but on the other hand, I do have to ask what planet is your Haematologist on?! – My Haematologist told me fatigue, dizziness are symptoms of Polycythaemia. Furthermore, if you trawl through the more reputable websites on this subject, namely the NHS, MacMillan and Mayo Clinic sites, they all confirm as much. I would seek a second opinion. In fact, although my Haematologist is very good, I am currently at odds with him about going on to interferon injections. As a result, I am currently seeking a second opinion just to satisfy myself before making an informed decision. This will probably mean having to go private for a one off consultation but for me this is such a big decision, I think it’s worth me investing the time and money.
Hope you get diagnosis soon Julia so you are able to get the treatment you need.
Take care
Keith
keith28441 leticia92303
Posted
Hi Leticia
Most cases of PV are not inherited and are acquired during a person's lifetime. However, in rare cases, it can be inherited.
An erythropoietin (EPO) level is almost always low or low-normal in primary polycythaemia; in secondary polycythaemia, it is elevated or high-normal when haematocrit is high. However, very occasionally, EPO levels are within normal limits in some patients with primary polycythaemia. Your RBC, HCT & HB levels all seem to be within range at present but I am guessing that if they have confirmed you have polycythaemia whether it be Familia, Primary or Secondary they want to keep your HCT at 0.45? Has your Haematologist explained as to why your WBC count is high? In Secondary Polycythaemia, it is only ever the red cells that are raised whereas 50% of people with Primary also have raised Platelets and/or WBC. Where WBC is concerned, it is often the Neutrophils that are mostly affected. There may be another underlying reason your WBC’s are high but as mentioned, I would ask the question.
Kind regards
Keith
julia15874 keith28441
Posted
I know Kieth it's really frustrating to suffer with symptoms that are shown to be the most common on every website for Polycythemia, then to be told they are not, I'm a little bit mystified tbh, I'm hoping my exon12 will be back next week so I can either start treatment or at least get to the next stage of diagnosis. I hope you too can get some good advice on weather to start on the tablets I can understand your concern, all the best too Keith and thanks again X
julia15874
Posted
leticia92303 keith28441
Posted
You can have a high WBC with PV., and are you in e UK or US? The reason I ask is because I've noticed that the normal levels are diferent for the UK and US......
WBC 12.62. Range is (3.98-10.04)
RBC 5.37. Range is (3.95-5.22)
Hemoglobin 15.2. Range is (11.2-15.7)
Hematocriy 47.2 and.Range is (34.1-44.9)
ABS Neutrophlis 8.44.Range is (1.56-6.13)
My Hemogloblin is,srill within range, but she said once my levels reached 15 she wants me to have bone marrow biospy, but she didn't have it done, this is another reason why I might want to have a second opinion.
leticia92303 keith28441
Posted
My EPO is at 6.8 so it's within range, but on the lower side of normal, this is why I question me being secondary, I wish it was broken down more on the normal range and where it falls normal/low and normal/high
keith28441 leticia92303
Posted
Yes, you can have high WBC and/or Platelets with Primary PV. Around 50% of people do including me. I am in the UK and yes, there is a difference in blood count ranges between our two countries. I think you should push your Doctor for a bone marrow biopsy especially if the JAK2V617F and JAK2 exon 12 has come back negative as this can tell her a lot where PV is concerned. If the biopsy is done, they will look at the hypercellularity in the marrow along with many other tests. It’s thorough, which is good. 4% of people with Primary PV don’t have the JAK2 mutation (I do, I have the JAK2V617F) and the fact that your White Blood Cells are raised, I would have thought would merit your Doctor proceeding with this. I hope you get a firm diagnosis soon one way or the other as I know from other people on this forum (Julia15874 being one of them) that the waiting and simply not knowing exactly what form of PV you have is really frustrating.
Take care and best wishes from across the pond!
Keith
leticia92303 keith28441
Posted
All I know a that she said I not have the JAK2 mutation, I haven't seen the results, I don't believe I've had the the JAK2 exon 12, I see her on the 7th of Nov. and I'll ask her about it then, I'm going to push for more answers. Thank you for everything.
keith28441 leticia92303
Posted
You're very welcome - Take care