I was diagnosed with having too many red blood cells a few days ago after going into the ER for dizziness. They drained a pint of blood. It came on so suddenly. Before draining, my level was 59%...after 53%. Today I had another treatment, at first I felt better, but now I'm so dizzy and palms are sweating. Note that I have an anxiety issue, so that doesn't help things. No chest pain other than the aches and pains i've gotten used to the past few days. Heads a little foggy, but no major headache. I'm set to have blood drawn each week until it's normal. I'm also weak. Do I need to be concerned with these sympthoms or is this to be expected in between blood draws? If it is okay, what should alert me to get medical help? It feels scary and aweful. Thanks.
Hello John.
Let's face it, even if you were completely well you would be feeling a bit wobbly if you had donated two punts of blood in just a few days.
Weakness, dizziness and sweatiness are just your body telling you that it has had a nasty shock.
Drink plenty liquid, take as much rest as you can (with yiur feet up if possible) tey not to worry and be kind to yourself.
All the best.
John are u in the UK? Your symptoms are classic for PV but you need testing for it, have they mentioned you seeing a Heamotologist? Anxiety comes with PV too, dizziness is awful as I suffer from dizziness all the time, it's the headache that comes with it too xx
The symptoms you get for the most part can be treated with meds. You will just feel the way you feel until your blood levels are normal. In my experience the hospital treats the discease and my fsmily doctor treats the symptoms. All you can do is tell ur doctor sbout any symptoms you msy have and they hopefully will treat them. Dont worry to much your in good hands. If you can identify your symptoms folk on here can tell you the treatment. Asside from that tell your doctor. All the best.
Hello John
Angela, Julia and Clem all make very valid points. I would also stress that Polycythaemia can be very variable in that it affects people in different ways. No two people are the same both in terms of symptoms and response to treatment. From my own experience, when I was first treated, I was having venesections (phlebotomies) every other day for the first 3 weeks, then they became weekly, then fortnightly and now I am down to monthly. During early treatment, I too felt weak, my dizziness became considerably worse as did my migraines with aura. Since my bloods have stabilised, I only experience the dizzy spells very occasionally but I have not had a headache let alone a migraine for a number of months now. I do suffer from fatigue and tinnitus but feel much better than I did. By 59% and 53% are you referring to your Haematocrit levels (HCT)? – If so 59 is high. Do you know what your Haemoglobin and red blood cell levels are as well? – You say you were diagnosed with having too many red blood cells but have you been referred to a Haematologist? Have you been told that they suspect you have Polycythaemia? Indeed, are they checking you for Polycythaemia? There are different forms of Polycythaemia - Primary, Secondary and Relative for example. Most are very manageable so try not to be too anxious, easier said than done I know. Should you be diagnosed with primary, don’t be alarmed if your platelet count rises. This happens in around 50% of us that have primary PV and again, it’s very manageable.
Hang in there and all the very best to you.
Kind regards
Keith
Thank you for your replies. I'm 43, have a wife and 3 kids. I live in the USA. I feel better today, a little light headed but not dizzy. No pain like I've been having, I assume it's improving because of the last treatment. Main symtoms have been dizziness, lightheadedness, unable to think clearly, random pains in my joints, abdomin, head and chest. Today is just cloudiness and weakness. It's good to know much of this will be gone after the treatments over the next 4-6 weeks. It does seem to be a bit better after each treatment. Having a family I worry about life expectancy, I want to see my kids grow up. I guess a lot of that depends on whether I have primary or secondary. I've been tested for the JAK gene, should get the results next week. What will that tell me exactly? I'm hoping this is secondary, but if so, there is a risk there as well because it could be secondary to something worst. My liver enzymes were way up, but nobody has said anything about it being cancer levels...i recently quit drinking, so that may be it. I also smoke (have cut down and am quitting). Lung X-Ray looked good as far as I know. I DO know that my blood levels were normal in 2012, if that tells us anything. I don't have my exact recent RBC count handy. My doctor is looking into sleep apnea as a potential cause, but I think he's awaiting the gene test results first. I guess that tells him if it's primary or not? Still trying to figure all this out. I'm in uncharted territory and just learned this disease existed on this week.
Also, is it normal to almost feel slightly "drunk" without having drank anything? Kind of like a numb head. If so, will this go away after my initial blood treatments? It's kind of like a foggy head.
That's exactly how I would describe how I feel, you kind of sway and you feel sickly, as my bloods are rising the symptoms are getting worse and more prelonged. It's funny my husband was asking me this morning how I was feeling and I replied with, "you know when your fresh from alcohol and, well it's like that, you can't walk in a straight line, but your happy when your fresh, this is unpleasant", then I read your post and laughed to myself as I rang the hospital Tuesday as my bloods have risen and I feel dreadful, spoke to my Heamotologist secretary, quess what I'm still waiting their call! It's like they don't care how I'm feeling only coming up with a diagnosis and leaving me until. im waiting for a JAK 2 exon 12 and a EPO result. Ps I get very cold and painful hands too at the moment.
Hello John
Yes, I forgot to mention that I too had “head fog” and couldn’t concentrate but this did improve as my treatment progressed. Most people with Polycythaemia enjoy a long and fulfilling life whether diagnosed with a primary or secondary condition. You will hear the term “median survival rate” and some websites go as far to say median survival rate is 15 years. Others say 10 years, others 20 years. Median survival is often misunderstood to mean the maximum life expectancy. In fact, it is the time at which one would expect half of a group of patients diagnosed at the same time to still be alive. The majority of patients diagnosed with Primary PRV are over the age of 60. Some are in their late 60’s, early 70’s and older when diagnosed. So 15 years later these patients are then elderly and will have died from natural or other causes, not by Polycythaemia itself! Many of those still alive 15 years later can continue to live for decades especially those younger patients. Yes, there is a risk of transformation to Myelofibrosis but this is rare and also Acute Myeloid Leukaemia, which is rarer still. There are people on this forum that have lived with this condition for over 20+ years and they are still going strong! Treatment for secondary polycythaemia depends very much on what is causing your symptoms. Reading your response to secondary polycythaemia, you are perhaps worried that you may have liver or possibly kidney cancer. These can cause you to have a high red blood cell count but conversely, there are many many other factors that can cause you to have these high readings, sleep apnoea being one of them, non-malignant cysts, but so can dehydration and even living at high altitudes would you believe can impact on your red blood cell count. Another possible cause is Hypoxia or COPD and smoking can certainly be a possible cause. Most secondary polycythaemia can be cured by treating the cause of it.
Sometimes you can scare yourself to death especially when trawling through websites. You may not have polycythaemia but even if you do John, as mentioned in my earlier posting, in most cases the condition whether primary or secondary can be managed and/or treated.
Hang in there all will become clearer during the coming weeks.
Kind regards
Keith
Hello again. I tried to send you an extract from a website about secondary polycythaemia but for some reason the moderators decided to delete it. I don't understand why. It seemed helpful and not at all commercially based.
Anyway, if you google "is secondary polycythaemia permanent?" you might be able to find it or other information that will reassure you that you are not experiencing anything unusual.
All the best.
On the cloudiness between blood draws, is there anything I can do to soothe it? I already take 81mg aspirin per day. Once I get over the dizziness after a draw, I feel much much better, but then I cloud up again a few days later prior to the next draw. Does this sound normal to you? I imagine after a draw, the blood starts replinishing itself, but not as fast as it's being taken out (hopefully) in the long run. Hopefully, after a few weeks, this will become few and far between, leading to more time being allowed to pass between blood draws. With this illness, it's as if my own blood has become my own worst enemy.
That sounds like my experience.
Hello John
Unfortunately, I can’t offer any advice on how you can soothe the discomfort following your blood draws. I would recommend you speak to your Doctor or Haematologist about this. It’s important however to drink plenty of fluids (preferably water) before and particularly afterwards following the blood draw, so this may help. I expect the nurses offer you this once they have drawn your blood but it is important you remain well hydrated afterwards. I am always offered a cup of tea following my blood letting and if I’m really lucky, I sometimes get biscuits as well…LOL
In answer to your question of how long it takes to replace the blood that has been taken. The plasma from your donation is replaced within about 24 hours. Red cells need about four to six weeks for complete replacement. That's why under normal circumstances at least eight to twelve weeks are required between whole blood donations. Obviously in our cases, it has to be on a more regular basis at first in order to free up the overproduction of red bloods cells that we have, thus allowing our blood to become thinner and able to flow more easily. Yes, the frequency will become less as time goes by. As mentioned in my earlier posting. I was originally having blood draws every other day for 3 weeks, then it was once a week, then once a fortnight and now I am down to once a month. Hopefully, I will be able to get it down to once every three months, which appears to be the case with a lot of people that are on this forum.
Hope this helps
Keith
Thanks for your informative answer. A draw once every other day, wow! You must have started out with a very high RBC count! After hearing that, for me, maybe once a week to start isn't so bad after all. 
I got some results, but I'm not sure how to read them. I think RBC is normal but Hematocrit is high. This is before I already had 2 treatments. Any help reading/understanding would be appreciated.
WBC: 13.1 x10^3/mcL
Reference Range:
3.2 x10^3/mcL - 11.8 x10^3/mcL
RBC: 5.63 x10^6/mcL
Reference Range:
4.08 x10^6/mcL - 5.96 x10^6/mcL
Hemoglobin: 21.0 g/dL
Reference Range:
12.9 g/dL - 18.1 g/dL
Hematocrit: 59.0%
Reference Range:
39.2 % - 54.0 %
Platelet Count: 241 x10^3/mcL
Reference Range:
132 x10^3/mcL - 400 x10^3/mcL
Nucleated RBC: 0/100 WBC
ALT: 109 intl unit/L (Ref: 0 - 55)
AST: 110 intl unit/L (Ref: 5-34)
This is where a proper conversation with your haematologist, asking for a clear explanation in layman's terms, is invaluable.
As has been said already, everyone with Polycythaemia has a different experience. The disease causes different people to have different problems which they have to deal with in ways that suit them.
In the meantime, drink lots of water-based drinks - plain water if you can - and this will help to keep your haematocrit levels down. This in turn might alleviate your symptoms.
Hello John
Your Haematocrit and Haemoglobin levels are high, so not surprised your Doctor has started you on a venesection (blood draw) programme. I am at pains to point out that I am no Doctor but I suspect you may have Primary Polycythaemia for the simple reason that your White Blood Cell count is also raised. Here in the UK the range is 3.7 to 11.1 and yours is 13.1 so above the higher limit. In Secondary Polycythaemia, it is only the red cells that are ever raised by that I mean HCT, Hb and RBC, whereas with Primary Polycythaemia 50% of people also have raised White Blood Cells and/or Platelets. White Blood Cells are made up of Neutrophils, Lymphocytes, Monocytes, Eosinophils and Basophils. I would suspect that it is your Neutrophils that are raised within the WBC group. The fact that your Haematocrit (HCT) and Haemoglobin (Hb) are so high is a good indication and meets the criteria for further investigation. With that said, I believe your Doctor will now refer you to a Haematologist if they haven’t already and he/she will probably want to test you for the JAK2V617F mutation. 96% of people with Primary PRV have this mutation. If it comes back positive chances are you have Primary PRV. It’s a simple blood test but the actual testing of it in the laboratory is quite complex so it can take 4/5 weeks for the results to come back. Well that’s the case here in the UK if done by the NHS. If it comes back negative, they will then test you for the JAK2 exon 12 mutation, which is another gene but rarer than V617F. If this doesn’t yield any results then they may want to do a bone marrow aspiration.
At this stage, at least there are some indicators as to what is causing you to feel unwell and more importantly, the Doctor’s are aware and are already treating you with the blood drawing so you are already in good hands. As mentioned, I am not a Doctor and the above only represents my own personal view but I could of course be wrong. If however they do diagnose Primary Polycythaemia, take heart from all the other comments you have received on this forum, it’s treatable and manageable. I am a case in point.
Let us know how things progress.
Take care
Keith
How are you doing John?
Starting to feel better, I get another treatment tomorrow. Stress is keeping me awake at night...even Trazodone won't knock me out. My BP was 157/102, but since the last blood draw, it's now reduced to 120/80. I guess it was the thick blood causing the high BP. I get another treatment tomorrow. Still waiting on the Jak2 test, maybe I'll get results tomorrow. Also got a ultrasound scheduled to look at my spleen and liver. My O2 is still dancing around 90 to 94, a bit low, wondering if that's got something to do with it. I'm participating more in my hobbies to keep me distracted. I hope it's not PV, but if it's secondary, I also hope it's not something worse causing it. On my white cell count, I noticed it was even higher back in 2007 when my red count was normal. I understand smoking and other conditions can raise it. I do have chronic bronchitis. Nobody in my family has ever had PV, so I have to wonder...though I understand it isn't always passed on. Thanks for asking. 
Good luck John, I hope it's nothing serious too, if your white cells were high in 2007 it could be secondry, I'm sure you will know soon, I'm glad your feeling better. I'm still waiting for a JAK exon 12 it's going to be another two weeks. I think mines secondry with my EPO been 8, but I too will have a better idea soon also. Xx