A freiend sent me some info on Erythropoietin as a cause for too many Red Blood Cells. It is a substance produced in the kidney.

It came to light by athletes injecting them selves with this substance to get more Red Blood Cells to provide more O2 for their contest.

Next the games people had to develop a test for it.

This may be the natural substance that we all have that makes us have too many Red Blood Cells.

I called my doctor about it & I go in next week to get mine tested. This may be the root of many of my health problems.

If all of you with PV get tested & have high natural results it may help in finding a cure.


Post yout results under a new Thread Heading. I will start one next Wednesday. I get tested Monday & they will call me with the results Wednesday

I am now going to do some research on excess Erythropoietin, cause, & how to lower it.

Primary Polychythemia is high Red Blood Cell count & Low Erythropoietin.
Secondary Polychythemia is high Red Blood Cell count & High Erythropoietin.

I asked a nurse to write an order for the erythropoietin test after hearing about it may be a cause of polycythemia.

My Erythropoietin test result is 38 in a range of 4 to 16

I have secondary Polycythemia, doctors just said I had polychythemia. Causes for secondary can be tumors/cysts in kidney, liver, and/or brain. Doctors have never mentioned any of these. They just drain blood & say they do not know what causes it.

Now I have to find a doctor to explore & test for tumors & cystists.

If you have polychythemia please get your Erythropoietin tested & post your reesults here.

I have Primary Polycythemia. I am a 32 year old female.My EPO level was 2.8 I wish you all the best, and please keep us informed as to how you are!

:) Candice

Results from internal catscan is kidney & liver look are normal, no cysts or tumors.

They are running a new series of blood tests to try to fing why the EPO is causing my polycythemia.

Anyone else have PCV caused by erythropoietin ?

Hi I dont know if any of you are smokers but it can cause secondary polycythemia as well as sleep apnea and dehydration and all are possibilities. I was told on a friday I had polycythemia and had a order to draw off blood on monday, I cut back on smoking and increased my water intake and before the procedure monday all my levels were normal unlike they had been for months past, so I continued my program and the test have been fine since.I'm no doctor but I may be off course on this post but that's my story

Hi All: I don't have PV but my brother has it and wanted I to ask a couple of questions. First I told him to have them test for erythropoietin to see if it's related and will find out when they do that test. He has the profuse sweating, sleep apnea, muscle cramps and many other probs, but when they do the therapeutic phlebotomy the unit takes forever to draw. Do the rest of you have that problem as well and if so is there anything you can do beyond drinking a lot of water to make it draw faster?

I'll let you know if I find anything out, because he just had his first unit drawn, and has to have it done some more until the count goes down. If you have any advice on this it would be appreciated. I don't know much about this disorder other than the few articles I've read. :wave:

Good Luck to you all...

"profuse sweating, sleep apnea, muscle cramps"

I have those problems also.

After they got my blood finally drained down to normal, it only takes 7 or 8 minutes now do take out a pint every couple of months.

I am trying to find out what causes the EPO to be so high. Not having any luck.

He has the profuse sweating, sleep apnea, muscle cramps and many other probs, but when they do the therapeutic phlebotomy the unit takes forever to draw. Do the rest of you have that problem as well and if so is there anything you can do beyond drinking a lot of water to make it draw faster?

.

The nasty symptoms -- you left out those damnable bouts of itching -- are par for the course. They will ease when he gets his HCT down and, recurring, serve as a handy reminder that it is time to go back for another blood tap.

Given that he has no problem with the veins, the water should do the trick if he drinks a lot of it. My preference is Gator-Ade since I find that I can drink more of it than plain water. Typically I visit Nurse Vampira at 2 PM and by then I've downed a half-gallon of the stuff.
:wave:

Hi BiggerMac and JinL: Have you found out what causes the erythropoietin to go up? My brother says he had the test for this and that it was normal.

BiggerMac: My brother also drinks a lot of water, I'm just not sure how much he actually consumes before he has the blood drawn. He says he drinks a gallon a day, but if he has his blood drawn early, I'm not sure how much he's had at that point.

Can you have thick blood and not a high RBC?

Good Luck to you all...

I am not a smoker or drinker. The doctors just say drain a pint every 2 months & not worry about it.

I hope if enough people find they are secondary PCV & keep askin questions about EPO then maybe someone will listen.

If the Kidney & liver is normal by all scans & blood tests then there must be some other reason for the more than double EPO levels that cause my PCV.

my 8 doctors so far do not seem to care. They just want to treat the symptoms, & not find the cause.

Scans & Xrays show normal kidney & liver. But my kidney keeps telling my bone marrow to produce more red blood cells at twice the normal rate.

I keep hoping someone somewhere will find an answer to the cause of the high eryphropoietin. Then maybe we can find a cure for that type of PV.

^How long have you been diagnosed with PV ?
I am asking this, because if it has been long enough and if there was a serious cause elevating your EPO, it would have presented itself by now.

I have had PV for at least 7 years. Just had a test for EPO this year.

I mave had had it for years & not known. The EPO test just became widely known because of the athletes doping them selfs with stuff to increasae their red blood cells to absorb more oxygen for contests.

Then they determine that there were tow kinds of PV. One with normal EPO they now call Primary PV, & one with high EPO the call secondary PV.

I do not know which came first with me. High EPO or PV.

But if enough people are tested when first have PV then maybe someone can at least find out WHY the EPO is evelated. Then maybe they can reduce the EPO & see if the PV goes away.


Then if that happens they may learn enough to cure the primary PV people.

There is no secondary PV, just Primary Polycythemia or Polycythemia Vera. or Secondary Polycythemia. With True PV, you have low EPO levels, and the blood counts come purely from the marrow, not the kidneys or other organs. It is caused by a genetic mutation rather than outside sources. Are they sure your high EPO levels are being caused by the kidneys? What tests have they run? I know how confusing all of this can be. :)
All the best,
Candy

JinL,

As you already know, high levels of EPO could be caused by cysts/tumours or cancers of kidneys or liver.

Your case is interesting to me....because I too have had borderline high RBC/HCT/HGB for about 6 years now. Only recently did my hemotologist mention about the possibility of Polycythemia. However, other than a mildly enlarged spleen , I do not have any other signs of Polycythemia.

My Jak2 came back not detected. I asked about the EPO test to my doctor. His reply was...'well you can have it if you want to...but it will not give us any consequential information either way'. He said EPO can be raised in certain cancers...but if I had these cancers...I would be dead by now...considering that my RBC/HCT/HGB has been raised for 6 years. Since the doc seemed reluctant to give me the test...I did not pursue this further.

However a curious thing has happened recently....my RBC/HCT/HGB which has steadfastly been borderline high in every single CBCs in the past 6 years....went down to well within normal range in the last two tests this year. I don't know if this is good news...or if there is something else going on.

btw, I do have a cyst on one kidney....but that really means nothing...because as per my doc...every other person has one or more cysts on their kidneys - some people go through their entire life without knowing it.

Sorry, I used the wrong name for my Secondary polycythemia. I called it PV.
I did more research & found that primary polycythemia is from bone marrow abnormalies & the Secondary polycythemia is from other causes. One of which is high EPO, it tells the marrow to start making more RBC.

I was scanned for tumors & cysts on the kidney & liver. Negative results.
My EPO is just twice the max & can't find out why.

If I don't get rid of a pint of blood every couple of months it gets so thick it clings to the side of the drain jug in clumps & strings.

I am so sorry to hear about that! I know how frustrating it is to know that something is wrong with you and not know why. Don't stop searching for answers. I'm glad that you found all of us on here to give you support and info. Please take care of yourself, and get those phlebotomies!!!!!!

:) Candice

My husband has PV and I have a question about epo. Is this test done routinely with the CBC when he goes for testing? I am looking at his test results and don't see it listed. Perhaps it is listed as another name, can anyone answer this? Thanks.

You have to ask the doctor to test for EPO.

Thanks for the info - i've noticed he has good & bad days/weeks, which is very frustrating for him. He is beginning to get to the point he only needs phleb every 4-6 weeks, which is good.