It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Blood and Blood Vessel Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-18-2007, 06:39 AM   #1
Senior Veteran
(male)
 
Join Date: May 2004
Posts: 1,997
JinL HB UserJinL HB User
Secondary Polycythemia -- Erythropoietin Test results

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.

Last edited by JinL; 02-22-2007 at 04:42 AM.

 
Old 02-22-2007, 04:56 AM   #2
Senior Veteran
(male)
 
Join Date: May 2004
Posts: 1,997
JinL HB UserJinL HB User
Re: Secondary Polycythemia -- Erythropoietin Test results

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.

Last edited by JinL; 02-22-2007 at 04:57 AM.

 
Sponsors Lightbulb
   
Old 02-22-2007, 05:26 AM   #3
Junior Member
(female)
 
Join Date: Dec 2006
Location: Ro
Posts: 11
CandyN HB User
Re: Secondary Polycythemia -- Erythropoietin Test results

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

 
Old 03-25-2007, 04:59 AM   #4
Senior Veteran
(male)
 
Join Date: May 2004
Posts: 1,997
JinL HB UserJinL HB User
Re: Polycythemia & erythropoietin

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 ?

 
Old 03-25-2007, 01:46 PM   #5
Senior Veteran
(male)
 
Join Date: Nov 2005
Location: sc
Posts: 590
hyper79 HB User
Re: Polycythemia & 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

 
Old 03-26-2007, 04:49 PM   #6
Senior Veteran
(female)
 
DesertBloom's Avatar
 
Join Date: Aug 2006
Location: CA, USA
Posts: 1,484
DesertBloom HB UserDesertBloom HB User
Re: Polycythemia & erythropoietin

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.

Good Luck to you all...

 
Old 03-30-2007, 02:01 PM   #7
Senior Veteran
(male)
 
Join Date: May 2004
Posts: 1,997
JinL HB UserJinL HB User
Re: Polycythemia & erythropoietin

"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.

 
Old 04-09-2007, 11:15 AM   #8
Senior Member
(male)
 
Join Date: Dec 2006
Location: Overland Park, KS, USA
Posts: 101
BiggerMac HB User
Re: Polycythemia & erythropoietin

Quote:
Originally Posted by DesertBloom View Post
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.

 
Old 04-09-2007, 12:56 PM   #9
Senior Veteran
(female)
 
DesertBloom's Avatar
 
Join Date: Aug 2006
Location: CA, USA
Posts: 1,484
DesertBloom HB UserDesertBloom HB User
Re: Polycythemia & erythropoietin

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...

 
Old 04-10-2007, 07:27 AM   #10
Senior Veteran
(male)
 
Join Date: May 2004
Posts: 1,997
JinL HB UserJinL HB User
Re: Polycythemia & erythropoietin

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.

 
Old 04-27-2007, 05:45 AM   #11
Senior Veteran
(male)
 
Join Date: May 2004
Posts: 1,997
JinL HB UserJinL HB User
Re: Polycythemia & erythropoietin

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.

 
Old 05-02-2007, 07:45 PM   #12
Junior Member
(male)
 
Join Date: Jan 2007
Location: CA
Posts: 36
caliper HB User
Re: Polycythemia & erythropoietin

^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.

 
Old 05-03-2007, 07:47 AM   #13
Senior Veteran
(male)
 
Join Date: May 2004
Posts: 1,997
JinL HB UserJinL HB User
Re: Polycythemia & erythropoietin

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.

 
Old 05-03-2007, 09:56 AM   #14
Junior Member
(female)
 
Join Date: Dec 2006
Location: Ro
Posts: 11
CandyN HB User
Re: Polycythemia & erythropoietin

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

 
Old 05-03-2007, 10:19 AM   #15
Junior Member
(male)
 
Join Date: Jan 2007
Location: CA
Posts: 36
caliper HB User
Re: Polycythemia & erythropoietin

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.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Life Expectancy - UNTREATED Polycythemia? jack511 Blood and Blood Vessel 0 11-07-2007 07:27 AM
Polycythemia Vera Question deedawnd Blood and Blood Vessel 2 10-04-2007 01:21 PM
Anemia with few symtoms...Scared & confused MissKris75 Anemia 22 05-19-2007 05:49 AM
Hemophilia B & Polycythemia Vera Em6 Blood and Blood Vessel 1 04-24-2007 03:39 PM
erythropoietin JinL Kidney Disorders 5 03-18-2007 05:44 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



midwest1 (9), ladybud (7), Pottsey1 (7), Cangal (6), japlopper (4), drs (3), jennifer2019 (3), femmedeviant (3), rbb825 (2), xanzaba (2)

Site Wide Totals

teteri66 (1162), MSJayhawk (990), Apollo123 (890), Titchou (825), janewhite1 (823), Gabriel (757), ladybud (736), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 05:18 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!