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Old 07-15-2008, 05:56 AM   #1
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cathy51872 HB User
Question Polycythemia Please Help

trying to find answers here. sorry my shift key is not working so everything will be lower case.

my husband is 37, not over weight, non-smoker. he went for multiphasic health screening the last 2 years. here is what he was last year

wbc 10 range 3.7 -10.5
rbc 5.40 4.40 - 5.70
hgb 17 13.1 - 17.3
hct 50.1 39.8 - 50.2 percent
bun 21 high 7-18
total bili 1.1 high 0-1.1
creatinine 1.0 .6 - 1.3

all these were high normal except for the high bun and bili
we attributed these to being dehydrated due to fasting 12 hour before the test. he works midnight shift and worked the nigh before this test.

now this year he took the night off from work so he rest before the test.

wbc 9.8 range 3.7 -10.5
rbc 5.80 high 4.40 - 5.70
hgb 18.1 high 13.1 - 17.3
hct 52.8 high 39.8 - 50.2 percent
bun 19 high 7-18
total bili 1.0 0-1.1
creatinine 1.0 .6 - 1.3

he took these to our family doc and she had him checked for Hemochromatosis. they called and said he did not have Hemochromatosis
but they set him up an appt with a sleep doc. he has no symptoms at all of sleep apnea but the doctor wants to rule this out.

i started doing a little research and found that Hemochromatosis and polycythemia were similar except for iron levels and my husbands iron level was 135 reference 55-175. here my questions

1. do we need to be concerned about pv with his number not extremely high


2. could he just go and donate blood a few times and see if that helps bring down his numbers. we can do another multiphasic health screening in oct

3. what is the process of dx'd pv

4. should we be seeing a specialist or can a family doc dx this

5. any body have any complications due to polycythemia

if you can answer any or all of my questions it would be greatly appreciated
i have posted on several boards with no reply. i just want to know everything will be alright.

thank you for any info

cathy

 
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Old 07-19-2008, 09:57 AM   #2
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BlackJAC HB User
Re: Polycythemia Please Help

Hi Cathy,

Three years ago i went through something similar, so I know how frightening and engulfing all the information about PV can be. First off, the best information anyone can give you and i wish someone drilled it into my head, is don't go reading things up on the net, especially when he hasn't been diagnosed with anything yet as you'll have him dead and buried within 10 mins.

If diagnosing everything was as easy as reading things from the net, then there would be no need for doctors or specialists and we all know how silly that sounds. the wrong information, in the wrong hands can be a dangerous thing, so please leave it to the experts. After all, they get well paid for it and have studied their trade for years. So don't go picking the only canary from a nest of crows so to speak.

Ok, lecture over, now on to the main part. Without having a bone marrow test, which is 100% accurate, PV can only be diagnosed by piecing together different symptoms and blood counts. Does he have any symptoms i.e. a ruddy complexion, unexplained itching, had any blood clots etc?

Polycythemia has many causes such as dehydration, alcohol abuse, smoking, living at high altitudes, lung disease, allergies etc etc, so don't go jumping to conclusions just yet. When all secondary causes have been ruled out, they'll continue on to the bone marrow test which will pretty much confirm whether it's primary or secondary.

They can also give him a nuclear blood test which involves drawing a fair amount of blood out through a huge syringe, then they take it away and tagging it, then pump it back into his arm as to allow them to get a true count. This is because normal CBC are done on a percentage count rather than a true count, so false positive do happen.

And no he can't donate blood as the blood is of no use to others, so it's just disposed off.

I was tested for 18months before my counts finally went within normal ranges and they have remained well within normal now for 3 years. Mine were cause through dehydration due to heavy drinking and as soon as I quit drinking my counts slowly went down. Mine were only ever slightly elevated too.

The best person to deal with your husband is a haematologist, it's what they do.

Last edited by BlackJAC; 07-19-2008 at 10:11 AM.

 
Old 07-19-2008, 11:47 AM   #3
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cathy51872 HB User
Re: Polycythemia Please Help

Thank you for you reply. He has an apt Wed to rule out sleep apnea. I guess after that we will go see a specialist. When you say dehydrated are you talking abou not drinking for 10 hours before blood test or prolonged dehydration from sickness? Also he is not a drinker all he usually drinks is cafeen free tea and water..
Thanks

Cathy

Last edited by cathy51872; 07-19-2008 at 11:50 AM.

 
Old 07-19-2008, 02:19 PM   #4
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Join Date: Feb 2005
Posts: 31
BlackJAC HB User
Re: Polycythemia Please Help

I'm no expert so i can't say for sure how dehydrated i actually was. However, i know it was bad enough to mess with my CBC. I drank for about 4 years heavily, I'm talking about 3 litres of Vodka a-week at 26 year old til I was about 31-ish and during that time i was lucky if I was drinking a lire of water a-week, so that gives you some indication of how bad things were in the hydration department. The daily recommended amount is 3 litres.

I'd like to take this opportunity to apologise if you thought my initial post was somewhat rude, but believe me, the worst thing you can do is go on-line when you aren't in a position to fully understand the information that you're reading. I made myself more ill with stressing out about the things i was reading than the actual problem was.

I know sleep apnoea is a major cause of polycythemia and some people have it without realising it, so it might turn out to be that. If it's not, then there's still plenty of things it could be.

I know how worrying it can be as I've been there myself, so some stranger telling you to not worry over something that may not be isn't going to give you the answers you're looking for, but please, please, please don't worry about something until you know you have something worth worrying about.

In a nutshell: You won't ever find the answers that you're looking for on the net and only a specialist is in a position to give you those answers before you know what's actually wrong with him. The net should only be used for reference, not for making a diagnosis.

If you need to talk, need advice from someone that's been there, then please don't hesitate to ask away, even if it's a silly wee thing.

Last edited by BlackJAC; 07-19-2008 at 02:35 PM.

 
Old 07-19-2008, 04:28 PM   #5
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cathy51872 HB User
Re: Polycythemia Please Help

I was not offended at all. I know that you can't believe everything you read. We have a 3 year the was dx'd with Wolfram Syndrome and the doctor told us only to read things from reliable medical sites. His future is in God's hands and hope and pray that what we read and have been told will not happen to him. We put our faith in God and with His grace we can handle what we need to. We are trying to find the easiest and cheapest way to get a proper dx if my husband does have PV.

Cathy

 
Old 07-20-2008, 05:08 AM   #6
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BlackJAC HB User
Re: Polycythemia Please Help

I was told by the haematologist if it did turn out to be PV, then it's really no different to being told you have type 2 diabetes in so far that both can be life threatening if you're not willing to make the appropriate lifestyle changes and choose to ignore your doctor's advice. So you've got to ask yourself would you be totality freaking out in the same manner if you were told you had diabetes? I know i wouldn't have been freaking out as much.

A statistic that scared me no end was the life expectancy, i mean at 30 year old you don't want to be reading things like the average life expectancy is only between 10-20 years with PV. However, it was explained to me by 2 Haematologists that these statistics are in fact only based on patients 60 years and over and most findings don't take younger patients into consideration. Our bodies are in a lot better shape than what a 60 year old's body would be, so those statistics are meaningless when it comes to younger patients.

It's more common to die with PV than from PV, so it's not all doom and gloom.

 
Old 07-20-2008, 04:42 PM   #7
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cathy51872 HB User
Re: Polycythemia Please Help

I have type 2 and my 3 year old has type 1. We just want to know what the process of dx is so we can be well informed. Thanks for the responses.

Cathy

 
Old 11-03-2010, 02:29 PM   #8
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tabowser HB User
Re: Polycythemia Please Help

Quote:
Originally Posted by cathy51872 View Post
trying to find answers here. sorry my shift key is not working so everything will be lower case.

my husband is 37, not over weight, non-smoker. he went for multiphasic health screening the last 2 years. here is what he was last year

wbc 10 range 3.7 -10.5
rbc 5.40 4.40 - 5.70
hgb 17 13.1 - 17.3
hct 50.1 39.8 - 50.2 percent
bun 21 high 7-18
total bili 1.1 high 0-1.1
creatinine 1.0 .6 - 1.3

all these were high normal except for the high bun and bili
we attributed these to being dehydrated due to fasting 12 hour before the test. he works midnight shift and worked the nigh before this test.

now this year he took the night off from work so he rest before the test.

wbc 9.8 range 3.7 -10.5
rbc 5.80 high 4.40 - 5.70
hgb 18.1 high 13.1 - 17.3
hct 52.8 high 39.8 - 50.2 percent
bun 19 high 7-18
total bili 1.0 0-1.1
creatinine 1.0 .6 - 1.3

he took these to our family doc and she had him checked for Hemochromatosis. they called and said he did not have Hemochromatosis
but they set him up an appt with a sleep doc. he has no symptoms at all of sleep apnea but the doctor wants to rule this out.

i started doing a little research and found that Hemochromatosis and polycythemia were similar except for iron levels and my husbands iron level was 135 reference 55-175. here my questions

1. do we need to be concerned about pv with his number not extremely high


2. could he just go and donate blood a few times and see if that helps bring down his numbers. we can do another multiphasic health screening in oct

3. what is the process of dx'd pv

4. should we be seeing a specialist or can a family doc dx this

5. any body have any complications due to polycythemia

if you can answer any or all of my questions it would be greatly appreciated
i have posted on several boards with no reply. i just want to know everything will be alright.

thank you for any info

cathy
I dont want to scare you, but Polycythemia can cause some trouble, mostly in the clotting area. I have had three major clots (thankfully none in my legs). I would encourage you to have your DR tell you your husbands CBC (platlet count) if they are above 250,000 your dr should do further test. It is easily managed, a handful of pills and your good to go keeping the blood thin is crucial and ensuring you take medications as directed, with that you can be completely normal for the most part. I have had Polycythemia for many years so if you have any specific questions I can answer please feel free to ask, I am not a dr, but i can certainly share my experiences and thoughts.

 
Old 11-09-2010, 01:17 PM   #9
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DerosGirl HB User
Re: Polycythemia Please Help

Hi Cathy: I just got word yesterday that I too have polycythemia. Going for my first hematologist visit tomorrow. I just wanted to tell you that your husband should be drinking water before his blood test. It helps the phlebotomist hit the vessel easier, which isn't the case if he's dehydrated.
Gwen

 
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