Polycythaemia

Hello Mitchell.

You raise many queries and would say that many of the symptoms you describe are quite consistent with those of Polycythemia.   Do not be too concerned at this stage as your treatment is very much in its infancy.  Your blood readings will fluctuate but can eventually be controlled by the appropriate treatment you receive.  This will take a little time to happen as you will need to undergo some medical tests before any treatment from the Haematologist will commence.  These are straightforward really and no cause for concern and may continue during your treatments.  Your platelet levels will be of importance and Haematocrit too but these will be fully considered by the specialists when advising you and recommending your treatment, which will undoubtedly vary from time to time.

However, do not overdo the alcohol intake as this can have an effect on your treatments.  Once set you should find  that everything will level out, your symptoms will become less troublesome.  Be aware that PV is a very rare and serious disorder that will need regular professional attention.  As you mention, do ask any questions of your specialist who is best placed to control your illness.  There is much one can learn abut PV etc from detailed literature on which your specialist can advise you.  As for your family member having the same disease this is not impossible I would say but because of the rarity factor (2 people in 100,000) it is virtually unknown.  Other diseases can give similar symptoms to PV which is one of the particular disorders found in the group of MPD"s (Myelo Proliferative Disorders).  I have been coping with this disease for some 20 years now and would suggest that you take things a little easy, let the medics do the worrying and learn to rely on them and the advice they offer.  This disorder is currently incurable but very treatable with new treatments coming along that have already made a difference.  It could also be that PV will not prove to be your problem.  Good luck.

Peter.

Has your haematologist organised a test for the JAK2 genetic mutation? That will tell you whether you have primary or secondary polycythaemia.Primary is when the JAK2 test comes back positive.  The JAK2  gene has mutated and you are stuck with your polycythaemia, Secondary is when something in your lifestyle (drinking, smoking, having been exposed to carbon monoxide etc.)  causes your blood to change. With a change in lifestyle the polycythaemia is not stuck in your genetic makeup and it can be reversed.

Your story sounds almost identical to mine two years ago. The pins and needles are because your blood is too thick to push about to the ends of your veins and your fingertips and toes aren’t getting enough oxygen. I had very blue fingertips in one hand. My HCT was 58.88. I have primary polycythaemia.

Your platelets will increase each time you have a venesection. But they don’t “live” long and will also “die” and the readings will be lower. A venesection is like a wound. Your body senses that it has got a leak from the wound and sends out platelets to plug the gap. So your readings after a venesection are high.

White blood cells come in different types, each type having a different job. Some are produced by stress, some by infection. They too will increase and decrease each time you have a blood test.

Hope that helps a bit.

I guess there’s not much else I can do except wait for the JAK2 test results (plus eliminate alchohol, drink water and take daily aspirin). 

The lady doing the venesection did not offer an explanation as to why my hematocrit may have dropped, but did say, “you’re under our care now and it’s important to look into why it was high in the first place, rather than why it has dropped”.  She’s probably right. 

I think I’m quietly hoping that the high Hct was high due to dehydration and drinking too much alcohol, and that it is now correcting itself since I’ve changed these habits.  I just think it’s unlikely as 3 pints per day does not seem ‘that’ high. 

I have been getting palpitations and something called ectopic heart beats, but he said that’s unlikely to be related to Polycythaemia.  More likely stress. 

Hi Mitchell you really do have to wait for the results. My last piece of advice to you is stay away from "Dr. Google".  The more you read, the more anxious you'll become. Since you won't understand half of what you're reading anyway, you'll come to your own conclusion which could be risky to your mental well being. We're all guilty of this, of course. But try and stay away until you get your results. 

I have a bad habit of trying to self diagnose.  I guess I’m not going to know anything until the results are back.  Should be back this Thursday, so not long.  

Thanks to everyone for replying. 

Hi Mitchell I know I'm right, been there, did it. I've had myself dying in 6 mos. cause I didn't understand the tidbits I was reading. I don't do that much anymore. Let us know what you're outcome is when you know. 

Well, there you are.  You have received some very sensible advice from those who have been and still are, going through the mill.  PV is a very variable disorder that keeps us all guessing at times and those on this forum are always ready to help where possible.  As you say, it is now necessary to just sit back awhile and consider everything.  You seem to have some very good staff at your medical centre and I am certain you will come to rely on their judgement.  Do take care of yourself, maintain a sensible diet with some exercise and you will discover that you can cope with the foibles of this disease.  It is recognised that PV is not transferrable to or by others and is neither known as an hereditary factor.

Peter.