Hey everyone, I have had some irregularities in my two most recent blood tests, and am now starting to get extremely worried. Last November during a routine exam it popped up that I was high RBC count, hemoglobin and hematocrit. I am a super freak about anything to do with my health and asked my GP about these results and he was not concerned. Note this was done in rural South Georgia, and I was fearful that issues were being overlooked. This past weekend I was hospitalized with what will hopefully be a one time atrial fibrillation attack caused by drinking too much at a party, but yet again all three levels were high. RBC count was at 6.49 x MIL, Hemoglobin was at 19.2 g/dl, and hematocrit was at 56%. After two days in the hospital and finally getting my heart converted back to sinus rhythm I had the tests re-done with RBC count of 5.68 x mil, Hemoglobin of 16.6 g/dl, and hematocrit at 49%. My erythropoietin was also only at 6 mU/ml. These tests were all done at a large and high quality research vascular center. I have seen a Dr. who is both an oncologist and hematologists and she said that she didn’t think that it was polycythemia vera, but of course as soon as I fell down the rabbit hole of Dr. Google, my blood levels seem too line up scary close with polycythemia. My Dr. is trying to determine if this is being caused by possible sleep apnea because I do snore quite a bit, but from the research that I’ve done it seems like secondary polycythemia due to sleep apnea causes high erythropoietin levels which mine are not. I am going back to see the Dr. again Monday. Is there anyone out there that could calm my nerves any? I am 20 years old and have worked hard my entire life and just started dental school a week ago. I am extremely scared of what this possible diagnosis could bring not only for my health but the disruption to everything that I’ve worked so hard to achieve. I know that many do not like this sort of “what are the odds” type questions, but this was the only place that I could find online. Thank you guys for reading
20 Years Old And Scared: Hey everyone, I have had... - MPN Voice
20 Years Old And Scared
It is worrying for you, but please wait for Monday and discuss all your fears and thoughts with dr. Hope you get on with him . If not find someone you do.
Meanwhile things you CAN do is look at your diet. Is it mainly fresh food and not to much sugar?
Moderate drinking recommended!!!!!
Look into how to sleep better . That can defiantly improved and is in your control . Some great apps …
Professionals will identify why bloods are high and offer advice on how to bring them down .
Your frame of mind is so important . Find something such as Qi gong , yoga maybe to help . ? Or running , walking etc ..
keep in touch . This is a great forum . Glad you have found it.c
Thanks for the kind reply Mostew. I will admit that my diet leaves a good amount of room for improvement. I also snore very badly. And I do not drink as much water as I should. I’m just grasping at straws at this point trying to come up with an answer, but I’m still fearing the worst. If I am diagnosed with PV, what will that mean for my continuation through dental school? Regularly missing school will be nearly impossible to maintain just because of the rigor of the curriculum. Thanks again Mostew
In the case you’re diagnosed with PV, it won’t make any change to your life. You’ll certainly be proposed to have a weekly interferon injection and monthly blood count monitoring. That’s all. I’ve got PV for about 5 years, diagnosed 2 years ago, and I barely notice it.
Thanks for replying Manouche. I will say I 100% fell down the rabbit hole of Dr. Google and worried myself to death. I know that you guys aren’t Doctors but I do want to ask about your experiences with blood work, and what tipped you all’s doctors to make the diagnosis. We’re your platelets and WBC counts also elevated? Mine are not and I’m hoping this could possibly be a good sign? Thanks!
You said that your HCT quickly dropped from 56 to 49 ? No phlebotomy done ? In this case it’s more likely to be secondary polycythemia and not PV.
Yes it did, however I was having many blood tests done throughout the day so while I didn’t have a phlebotomy, there were many vails of blood taken during my stay. I was also on heparin to decrease clotting risk while in the hospital because I was not allowed to move. Hematocrit was at 53 back in November during my check up with a GP. I am so hoping you’re right though. I just have read over and over that in secondary PV they usually see erythropoietin levels on the higher end of normal but mine are just above the lower normal threshold, which seems to be more indicative of PV…
I can’t emphasise enough how important it is to work on the things you CAN-do something about.
Strange isn’t it , so much easier to do the opposite!!
Stress is so bad for our health. Saying that I certainly didn’t look after myself as well as I should at 20. !! But did have good diet and do yoga to try and compensate for overindulgence in other areas …..
I found I have JAK 2pos as my platelets were slowly increasing . Also got under active thyroid so had yearly tests ..
good luck with appointment . Ask lots of questions ,
Hunter is right , you need to be referred to MPN specialist
X
No reason why you can’t continue your
Have your onocologist of hematologist check for gene mutations as that will be a fairly clear indicator if its PV or ET. I had a random blood test like you at age 40 and had some numbers that were high so had this blood test to check for the mutation and it came back as positive for the JAK2 mutation. I've done really well since then managing with Phlebotomys every 3-4 months and low dose aspirin. I always have been really fit, eat healthy and keep the weight down. When I hit age 60 recently I went on low dose Pegasys just because 60 is a risk factor. I've led a very NORMAL life with no noticeable symptoms. Most experts say that if managed properly, one dies with PV not because of it so quit worrying and get the proper tests done to figure out what is going on.
If you have PV you almost certainly have a JAK2 mutation. This can be measured in a blood test.
It sounds like you are doing all the right things as far as being proactive in your care. I’m sorry this is causing you so much stress. I’m sure you will get some answers soon.
Sometimes stress can wreak havoc on our physical health. I agree with Mostew that you should find an outlet to deal with that, any kind of exercise. Join a gym, go for a run, etc.As far as your jak 2 question, I’m in the US and the jak 2 mutation was found through a bone marrow biopsy in the doctor’s office. I got my results on the same day. That was in 2008, but now, apparently, according to people on this forum, they can find it through a blood test.
I wish you all the best. Please keep us updated.
Hi Cja1956, thank you very much for your reply. I am also in the US so I am hoping to have speedy results from testing. After googling all on the internet I was convinced I would die of stroke or heart attack in the next ten years. However, after reading through this site it seems like people can live long and happy lives after their diagnosis. Do you know if there is any difference in the prognosis for young adults who are diagnosed with this disease vs the more typical later in life that this disease usually occurs in?
It seems that as more research is being done, more people of younger ages are being diagnosed with an Mpn. I don’t have PV. I have post ET MF. I was diagnosed with ET at age 52, in 2008. There are people on this site that have had PV for 30+ years. If you do have a blood disorder, you will get the benefit of all the research. There are new medications being tested all the time.
Let us know what the doctor says. This is a wonderful and supportive site and I’m glad you found it.
Welcome to the forum. Glad you found your way here. This is a good place to find support and information.
The first thing to know is that it is important to consult with a MPN Specialist rather than a regular hematologist. Most hematologists do not have the KSAs to provide optimal care for MPNs due to how rare they are. At a minimum, your docs should have already checked for the JAK2 mutation, which is present in over 95% of people with PV. This is a simple blood test. I am surprised that with what you describe this has not already been done. I am not sure which doctor you are going back to see, but now would be the time to arrange to see a MPN Specialist. Here are two lists
pvreporter.com/mpn-speciali...
At this point you do not know whether you are experiencing primary or secondary polycythemia. It is best not to jump too far down the rabbit-hole until you know what is going on. Dr. Google will scare the daylights out of you when information is taken out of context. The longevity studies do not predict the prognosis for any one person. The reality is more complex than that. Manouche cites some reliable findings, but you have to understand how the risk factors play into the equation to understand what it means for you. That assumes you have PV, which you do not know at this point.
FYI - I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. At age 66 I am still alive and kicking. I have had a good life and continue to do so. Please know that it it turns out that you do have PV you should plan to do the same. PV can be managed. Sure, there can be some challenges. I have seen a few myself; however, challenges can be met. I have had a 40-year career in behavioral health services and continue to be able to work as I wish. You can most certainly pursue the career of your choice.
It is VERY important to manage your health proactively, particularly if you do have a MPN. We have to give ourselves the best chance possible. this includes a healthy diet, exercise, maintaining cardio-vascular health, and not over-indulging in things that are bad for our bodies. This includes maintaining good mental health, which includes mindfulness practices like Qigong/yoga/meditation to manage stress.
Regardless of what the cause is, know that you have this. You will get to the bottom of what is going on and find a path to managing it. Please stay in touch and let us know what you find out and how you are doing.
Hi Lc06091
I am in a similar position to you & can totally relate to the panic when you went down the PV rabbit hole on Google, as I’m sure many other will m. I am 50, but my strange blood results have been ongoing for almost 4 years now, no diagnosis or treatment as yet & awaiting to be seen by Haematology. I am in the UK but it has been a battle to get a referral because I have no other symptoms and am JAK2 negative. However my Hb, Haematocrit & Feritin all raised, I don’t know about my Erythropoietin I don’t think that’s ever been tested. My white cells are normal too as are platelets.
I’ve found members on here so supportive & reassuring & I see they have already given you some great advice. I’ve none to add but wish you well with your journey & please keep us posted on how you are doing. You sound proactive with your health which can only be a good thing!
All the best,
Lynn
Where abouts in the UK are you? Following a routine blood test for my thyroxine levels my blood results were unusual. Strange platelets and raised levels of red blood cells and raised platelets. My GP re ran the tests twice with no alteration and he referred me to a haematologist specialising in MPV and was diagnosed following more tests and scans . I spoke to the haematologist within weeks and was diagnosed with ET . Have you been referred to the haematologist?
Hi. I understand why you're concerned and you've got some good advice here. The only thing I can add is to take a precautionary approach until you know for sure whether or not it's PV. The high Hct would be my biggest concern. eg drink at least 2 litres of water a day, reduce iron intake such as lots of red meat. You should have had a JAK2 blood test by this with high Hct. Interesting they've done erythropoietin test without doing JAK 2. If it is PV as others have said it's manageable. All the best.
It sounds as though you are getting the right support and investigations. It is easy to say 'don't worry' but I have PV and can assure you ~I live a normal life. I do have a healthy diet, but that is no hardship! I take hydroxy and this keeps my bloods stable. There is lots of information on this site about the condition, but hopefully your medics will get to the bottom of your problem. Best wishes.
Welcome, trying not to worry is easier said than done.You’ve had some wise words given to you so you are on the right track.There is little more for me to say apart from make sure you get tested for an MPN. This will look for a mutated gene. If it’s positive find an MPN specialist.
The only down side is that it can take a few weeks to get the results.
Mean what concentrate on those studies and reach for the top. Having a good job will help enormously. It will allow you to have financial flexibility.
Sending hugs
Hi Lc06091, welcome to the forum.
First off, I am not medically trained, so what ever I say may be a complete misinterpretation of what I have read on the subject.
But I'd like to point some things out.
One thing to remember while you are figuring out what is going on, this is not an emergency situation. There is time to figure things out. An indicator that this may not be an MPN is that your blood counts dropped after being treated for the Afib, which I would be surprised they would do if an MPN is at fault.
Though there are some genetic markers that indicate an MPN, MPN's tend to be a diagnosis of exclusion (ie: we can't find another reason for this to be happening). So doctors will want to look for other reasons for elevated blood counts before diagnosing an MPN, to ensure they are treating the cause of the symptoms rather than the symptoms.
I did find a somewhat weak association with Afib and elevated blood counts. Since you were hospitalized to treat Afib, it is quite possible your high numbers are due to that instead of an MPN Even though they were elevated in earlier tests, You may have had subclinical Afib for some time prior to the attack that hospitalized you.
Addressing the Afib may resolve the blood count levels. You will need to address Afib in any regard as it is also known to increase the risk of dangerous levels of blood clotting. While waiting for a determination you might want to change your diet to lessen the chances of a stroke or heart attack, something to consider with a MPN as well. After all a good diet never hurt anyone, except maybe in social situations in some parts of the USA. (I had a lovely black bean stew laced with beef at a restaurant and I commented to the waiter that it would have been fantastic with less meat. She smiled and said, yes but you are in Wyoming, you know)
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