Potential Polycythmia?

Hi everyone my name is Jake and I'm 21 years old. Over the past two years my GPA has mentioned on passing that my RBC is slightly higher then normal and my HGB is borderline normal for the past two years these are the results

2016 RBC- 6.12 (norm 4.20-5.50)

2017 RBC - 6.04( norm 4.20-5.50)

and my Hemoglobin was 17.2 last year and 17.3 this year (high avg is listed as 17.0)

My platelet was 330 last year and 324 this year well within the average of my doctor list.

My GP gave me multiple options and said he will test me for JAX next physical in a year . I have none of the symptoms and have a full exciting energetic life to this point but when I got home and Google search polycythmia I've been a total nervous wreck and stressed to the max after mainly reading about how it's called cancer (my mom had ovarian cancer) and it terrifies me ill be as miserable and In pain like she was and I don't want that to happen. Also the life expectancy scared me. I'm only 21 and want to live more then 15-20 years .

26 Replies

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  • Also for the record ever since a child I've always had one elevated level in blood tests . I can't remember what it was but I might just have a naturally high Count maybe? My GP also just said "mild Polycythmia" he didn't mention Vera or Primary or Secondary . I am sure if my GP was really concerned he would have forced the JAX test or other testing right then and there

  • Hi Jake, I can understand your anxiety. A year is a long time to wait for a jak2 test? It maybe your 'polycythemia' is secondary to something else, which in itself needs answering. I presume you're based in the USA? I would advise you firstly to go back to your GP for him to determine is your 'polycythemia' primary or secondary.

    There are plenty of people on this forum who have primary polycythemia who will be able to answer any questions you may have - but you maybe worrying unnecessarily. Google can be misleading with regards to self diagnosis and interpreting disease, stay away if you can for now.

    I wish you luck

    Mary x

  • Thank you so much Mary! Just reading that it's cancer and the life expectancy was my two biggest fears . Cancer because my mom had Ovarian and she suffered and was bed ridden constantly with dozens of meds and constantly in the hospital and being in and out of consciousness . I don't want to have the same happen to me. The life expectancy also got me as Im only 21 I want to live a long happy life.

    Thank you!!

  • The life expectancy is if your diagnosis isn't treated.

    There's people had mpns for over 40 years.

    We felt the same as you when my husband was diagnosed with pv 4 years ago.

    You can lead a normal life as long as you are being cared for by your hematologist.

    If this is left and not managed then your life expectancy would be short.

    Tracey

  • Hi Jake

    It is worrying when people mention conditions to us, especially when we dont know what it means or what can happen.

    I think you are probably right that some people could have a naturally high count. In the UK the 'normal' levels for HGB are 13.5 - 17.5 so people must naturally sit at all ends of that, 13.5 or 17.5.

    I know elsewhere they go with 13 - 17. For women its slightly lower.

    I would very much doubt you have Secondary at your age, its usually due to lifestyle such as smoking, but can be from living at high elevations i.e its when the body isnt getting enough oxygen.

    You are clearly concerned and its natural, I would push for your test, its actually a JAK2 test. Its a gene that was identified in 2005 as being one of the reasons people can get these type of conditions. If the result comes back as JAK2 positive its a good indicator, especially with PV as 95% of PV patients have the gene mutation.

    With regards to google, we all do that and its scary, i did the same, i was 42 when diagnosed.

    There is some useful information on there but a lot of very scary information that has to be taken in context, so for example the life expectancy is one. Its based on data and information gathered over years and years, so they are probably correct in stating the life expectancy of the 'average' PV patient could be 20 years, however you also have to take in to context that the vast majority of people diagnosed are over the age of 60, so in reality if you are 60 its going to be that anyway.

    What you should read its that patients with these types of conditions can hopefully lead a full and normal life span provided the conditions are managed.

    By managed it means regular checks and what ever is needed to keep the levels in check, such as medicaton or venesections if the levels get to high.

    The biggest health risk to PV patients is before diagnosis, as you have said you have not outward symptoms, and this can be the same for most of us, so it can go undetected in a lot of people and this is where the biggest risks are. You are under supervision now so this risk is reduced significantly.

    One other thing to add is that medical advances in the treatment of these conditions is improving all the time, especially since the discovery of the JAK gene. The information you are reading is from decades worth of data so bear this in mind too.

    Try and keep active, keep well hydrated as this helps keep the blood thin.

    If you are diagnosed with PV I wont say dont worry because we all do and of course it brings it challenges and risks but you have youth on your side so you can make sure you make the right lifestyle choices that will help with your health going forward.

    Hopefully you will find that you are just naturally at the top end blood count wise anyway.

    All the best

    Paul

  • Here they use 13.0-17.0 for HGB mine is 17.2 last year and then 17.3 this year. I would think it would be a universal HGB number they would use cause according to that in the U.K I'd be in the normal range yet here in the USA I'm slightly out of range

  • Thanks Paul. I'm a constant worry Wod. I'm sure stress from college is a bigger concern and will tear me back quicker. I read about treatments and most seem easy. I do have a huge gag reflux so larger pills will be a challenge though I'm sure I can just sneak the pills in if need be in some yogurt or in between bites. Thanks for all your help everyone . I don't want to have to deal with the same effects as my mom did with ovarian cancer she was miserable 90% of the time with everything going on. By the looks of it I assume PV is nothing close to as severe as some of the more potent cancers??

  • I hope I'm not making to many posts I just have a lot to say lol. Drinking water may very well be of use. I tend to slack on drinking water sometimes going a day without a glass of water. According to some medical sites my RBC is in average range and my HGB is in normal range. Just at my GP I'm slightly elevated. If it ends up being PV I'm glad it was caught while my counts were still slightly high and "mild"

    I'm curious does people's counts continuously climb no matter what as you get older or can people's counts be stable throughout ? Meaning will everyone's counts creep up or is it dependant on the situation ?

  • Hi

    Try and aim for 3 litres of fresh water a day.

    I dont think there is an answer regarding your question re counts increasing, everyone is very different.

    Paul

  • Weak tea must be as good as water -I hate straight water!

  • I've been told everything with caffeine is not just useless but even worse because it acts like a diuretic. Try adding cucumbers, oranges, lemons or limes to your water for flavor. Also some do better with fizzy water and you can buy a device to turn flat water to fizzy water. It's not expensive if you'll be using it a lot. Katie

  • I only have one coffee a day . It's very effective for helping my asthma and bronchiectasis. As I have PV also I try to drink a bit more fluid. Coffee is the only food / beverage helpful for asthma. Tea and the warmth of these beverages helps with chest problems too. I've read reports that coffee can help with gallstones, Preventing bowel cancer and providing energy of course.

  • Hi again Jake, I'm off to work now, so I'm sure someone else will answer, but would just like to say you can post as often as you want...never be afraid to do that.

    Mary x

  • Thank you! Also curious about the medications . Since I have a gag reflux with even the smallest of pills is it possible to put the full capsules such as hydra in a cup of applesauce or yogurt to make it easier to swallow the pill instead of just water?

  • Hi Jake, you have to stop, right now, assuming you have an illness you probably don't even have. Really. It's not good for you. Don't be worrying about pill size, etc. That said, have you talked to your Mom and her doctors about her having genetic tests for breast cancer? Men get it and in women there's often a correlation between the two. Note that I said in women. No one should get tested for cancer genes like breast cancer without first going through genetic counseling. Good luck. Katie.

  • Hi! One thing I really noticed at "the Google stage" is that because MPNs are rare, it's hard to get a realistically "average" picture.

    I understand the fear - my Dad died of AML, and it was apparent from early on that it was going to be hard, so when my husband was flagged for a possible MPN, I was so worried I couldn't think straight. But really, his situation was quite different.

    Good idea to keep getting regular blood tests, and at some point, a genetic marker test, but don't lose sight of the fact that you seem to be in good health now. That's the bottom line, after all!

  • Thanks for all the replies. My GP said it's only slightly elevated right now and medical sites I'm considered in normal range in many. My GP and the local nurse didn't seem to alarmed so I'll be going for a blood test this spring for my sake as well as the usual yearly blood draw check in December and then have my results reviewed from both draws and have the JAX test next physical in January 2018. I am in superb health right now thankfully . I'm glad I stumbled upon here. I do get nervous but realize from even the negative stuff I've read it really isn't close to as bad as some other diseases and cancers

  • It should be worth noting that I do also have a mild genetic condition (NF1) and after reading into it that can cause elevated blood pressure and blood vessel abnormalities

    "The NF1 gene is located on chromosome 17. This gene normally produces a protein called neurofibromin that helps regulate cell growth. The mutated gene causes a loss of neurofibromin, which allows cells to grow uncontrolled."

    That is from the Mayo Clinic and Maybe leads me to believe the cause might be this. Just passing along information that I read. In relation to what I've read my counts while slightly elevated aren't alarmingly high .

    Thank you

  • Yes I've never heard of that and that may be all you have -so many rare things.

  • Could very well be connected Jake. If it's all making you anxious you should go back to your GP for clarification.

    Good Luck 😉

    Mary x

  • Just curious if this isn't too nosey what everyone's RBC,Platelet ,and HGB counts were at the time of and before diagnosis . In 2016 RBC I was at 6.12 but dropped to RBC 6.04 this year with no treatment or anything . Same with my Platelet . Dropped from 330 last year to 324 this year . The only increase if you'd like to call it was the HGB which only went from 17.2 to 17.3

  • Hi Jake, just to say you're probably better asking your last question in a new post under a new heading. It's just that people may not notice it here.

    Mary x

  • Hi Jake, I have ET, so it was only my platelets that were above normal at 500. However, my haemagloben and haematocrit were at the very top level of normal for a woman.

    Mary x

  • You will be ok if it's PV . PPlenty of treatments and even more coming along in the next few years which may put us in remission . I've on

    Y had it 3 years , on hydrea and aspirin and no symptoms from disease or treatment! I'm 73 and hope to live 25 more years like my father did.

  • Thank you so much everyone . I just put the worst case scenario in my head all the time. All of you are amazing at helping me. In light of all of this since when people say "act your age instead of your shoe size" I can just say well "try explaining that to my blood!"

  • I guess one of the things constantly on my mind is all these percentages . Notably of course the risk of changing to MF and then either CML or AML. After reading it the percentages worry me. Even though I read 15% for MF and then 10% for CML or AML that stat still alarms me with the prognosis of them

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