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   Reply Reply
LinkBack Thread Tools
Old 07-25-2012, 01:56 PM   #1
Newbie
(female)
 
Join Date: Jul 2012
Location: CA
Posts: 2
xanzaba HB User
polycythemia?

I was wondering if anyone had any advice. I'm a 34 year old woman in otherwise good health. About a year ago I started having pain in my arms and legs. I went to the doctor who did some routine tests and the only things that came back abnormal were related to my red blood cell count (hemoglobin,hematocrit etc.). The doctor thought I was dehydrated and probably had fibromyalgia.

Well, after months of tests everything was normal except my hemoglobin, hematocrit levels were consistently high. My levels were:

Hct 49
Hgb 19

I was sent to a hemotologist who sent me for a phlebotomy and a JAK2 test, JAK2 came back negative. Since, I've been checked for everything. While trying to figure out what was wrong, my levels started to drop. The pains were still there (but maybe a bit weaker) and I started getting short of breath. Now, I was having blood tests every two weeks or so, and my levels were still borderline high. My current levels are:

Hct 46
Hgb 16

The doctor thinks that because my blood levels are now borderline normal, they are not related to the pain. He thinks that I might have been dehydrated (for over a year?) or under a lot of stress (yep!). I also notice that when it is sunny and warm, the pains are much worse. Air conditioning, swimming, etc. helps, I think by lowering my body temperature.

Anyone have any similar experience? I think my doctor is fabulous, and I know he's done all that is possible. But I still am dealing with these aches. Think flu-like aches every afternoon.With 3 more warm weather months ahead, it's going to be tough.

Last edited by xanzaba; 07-25-2012 at 01:59 PM.

 
Reply With Quote
The following 2 users give hugs of support to: xanzaba
debnz (08-18-2012), Pottsey1 (07-29-2012)
The Following User Says Thank You to xanzaba For This Useful Post:
debnz (08-18-2012)
Sponsors Lightbulb
   
Old 07-29-2012, 04:38 PM   #2
Senior Member
(male)
 
Join Date: Oct 2008
Location: Dublin, Va., USA
Posts: 177
Pottsey1 HB UserPottsey1 HB UserPottsey1 HB User
Re: polycythemia?

Hi.My name is Randy and I am Primary Polycythemic for over 12 years now.I am almost 64 (Sept.)Your Htc is definitely high.I was diagnosed in 2000 by bone marrow test.I think the normal htc for females is around 37 to 40.I have aches in my arms,legs,hands,feet and tingling in fingers and toes.I seem blood shot all the time and I have a random itch;mostly on my arms and legs.Yes;and temperature changes do play a definite role in it.I have not had a phlebotomy in around 3 years.My spleen enlarged in December 2010 and had to have 15 radiation treatments to reduce the size.It's starting to enlarge again and my hem says we will deal with that when the time comes.With the meds and regular visits to have my blood tested;life goes on.I wish U the very best and hope everything turns out good for U.
God Bless;
Randy

Last edited by Pottsey1; 07-29-2012 at 04:41 PM.

 
Reply With Quote
The following user gives a hug of support to Pottsey1:
debnz (08-18-2012)
The Following 2 Users Say Thank You to Pottsey1 For This Useful Post:
debnz (08-18-2012), xanzaba (07-30-2012)
Old 08-18-2012, 11:13 PM   #3
Junior Member
(female)
 
debnz's Avatar
 
Join Date: Aug 2012
Location: Christchurch New Zealand
Posts: 39
debnz HB Userdebnz HB User
Re: polycythemia?

hi there, My name is Debbie from New Zealand, Christchurch, Firstly want to send you both Big hugs as I too am a suffer of Polycytheamia Vera ( sure it Primary) as I have Low erythropoietin, they say Mine is Idiopathic Erythrocytosis, Jak2 Un-mutated my first one when they venesection me was Hb 169 HCT .49, they tried to venesection the week later but veins would't allow then but was Hb155 HCT .44% then two week later they venesection again and Hb 157 mine was 169 Hb . HCT .44 Normal range for women 120 - 160 g/L and the normal range is .36 - 46 mine first one was .49% I think there was a lot of confusion about what was wrong and did a Bone Marrow biopsy and that didn't really show anything more than what they already suspected, I was Having chronic Migraines I had them for years of and on. also I started to get High blood pressure out of control, yes there is areal itch i find after i had a hot shower, or if i got hot while sleeping I'd wake up itchy, my arms and legs to get cramp and sometime twitch , I have reddish palm of my hands and on my face, I'm Part Maori, so I guess I'm red face Maori lol I still have some sense of Humour. I was Diagnosed last year from my GP he sent me to Haematologist in September 2010 lucky I guess before the Big Quake in my home town Christchurch, Before that He Had Sent me to Neurologist cos they had done a brain scan, and all was clear their they say. well I hope that give you a little insight of PV, Because of my red hand I think my touch sensory is like electric shock going down my hands and fingers and I suffer from chronic headaches my whole head sometime feels like it getting screw of from around the neck and Jaw, I suffer from a eye twitch, they seem to think that a benign Blepharospasm-essential a Focal Dystonia. that scare me more that the PV. anyway i got to get of here see ya next time good bless and take care.

 
Reply With Quote
The Following User Says Thank You to debnz For This Useful Post:
xanzaba (08-19-2012)
Old 08-19-2012, 09:48 AM   #4
Newbie
(female)
 
Join Date: Jul 2012
Location: CA
Posts: 2
xanzaba HB User
Re: polycythemia?

Thank you for sharing your stories, I hope you are doing okay.

The aches have gotten a bit better, less frequent, it's been a cool summer in northern california. At the worst part, they had trouble getting blood from me, and my dentist thought that I had stopped brushing my teeth because my gums were so puffy. I just went back to the dentist and everything looked normal again.

However, there still is something going on. I've been bruising a lot more easily- I had a really dark bruise on the back of my right knee that looked like it followed a vein. I also get itchy when it's really hot, on my back and stomach, and one really hot day I had a heat rash all over my stomach.

Debrusselinz, I also get some electric shock like feelings. If I see someone fall, or if I know I'm going to fall it's like getting a static shock that travels all the way up my arm or leg. Is that a polycythemia thing?

 
Reply With Quote
The Following User Says Thank You to xanzaba For This Useful Post:
debnz (08-20-2012)
Old 08-19-2012, 11:59 AM   #5
Senior Member
(male)
 
Join Date: Oct 2008
Location: Dublin, Va., USA
Posts: 177
Pottsey1 HB UserPottsey1 HB UserPottsey1 HB User
Re: polycythemia?

Hi!Name is Randy and I'm PV for 12 years and live fairly normal life.The real bad thing for me is lack of energy and severe fatigue.I have a Hem appointment tomorrow.
Glad U got diagnosed and getting treatment and everything is going well for U!
God Bless & Take Care;
Randy

 
Reply With Quote
The Following User Says Thank You to Pottsey1 For This Useful Post:
debnz (08-20-2012)
Old 08-20-2012, 03:13 PM   #6
Junior Member
(female)
 
debnz's Avatar
 
Join Date: Aug 2012
Location: Christchurch New Zealand
Posts: 39
debnz HB Userdebnz HB User
Smile Re: polycythemia?

Quote:
Originally Posted by xanzaba View Post
Thank you for sharing your stories, I hope you are doing okay.

The aches have gotten a bit better, less frequent, it's been a cool summer in northern california. At the worst part, they had trouble getting blood from me, and my dentist thought that I had stopped brushing my teeth because my gums were so puffy. I just went back to the dentist and everything looked normal again.

However, there still is something going on. I've been bruising a lot more easily- I had a really dark bruise on the back of my right knee that looked like it followed a vein. I also get itchy when it's really hot, on my back and stomach, and one really hot day I had a heat rash all over my stomach.

Debrusselinz, I also get some electric shock like feelings. If I see someone fall, or if I know I'm going to fall it's like getting a static shock that travels all the way up my arm or leg. Is that a polycythemia thing?
Oh thanks Xanzaba, It was lovely to get your reply, and reading your letter, I got My teeth out when I was in My early 20s, cos I had gum Disease, they use to bleed, and swollen gums, I use to hate going to the dentist. I'm Now have problem with my gums as to like when you have really bad tooth ache in everywhere the tooth use to be I guess that's fan tom tooth ache, where all the nerves are full on, and man that murder. And maybe that why i also having problem with my eyes, I went to the eye specialist the other day been I'm having a lot of problem with my head and eyes, mouth not sure if its related to my headaches/ PV or not at the moment, Oops just forgot to take my eye drop, I'm not a big fan on the drops in my eye, but it sounds better than getting botox injection in the eye. I had a Pain specialist that told me that I possible have Fibromyalgia - chronic wide spread pain and tenderness, and also Benign Essential Blepharospasm/ Focal Dystonia which is a eye muscle contraction disorder. I don't like the thought of that at all. Hopefully someone can tell me what that all means, is that related to my headaches or what, See my GP soon, as he wants me to see bone specialist. Oh well Lots of Fun, I better get of here and get organised, Oh yes the electric shock I get is scary I don't like them either, When I go to touch something I get a very funny pain likes electric shock on hands, just horrible. Have a good day hope to chat again soon

 
Reply With Quote
Old 08-20-2012, 03:27 PM   #7
Junior Member
(female)
 
debnz's Avatar
 
Join Date: Aug 2012
Location: Christchurch New Zealand
Posts: 39
debnz HB Userdebnz HB User
Smile Re: polycythemia?

Quote:
Originally Posted by Pottsey1 View Post
Hi!Name is Randy and I'm PV for 12 years and live fairly normal life.The real bad thing for me is lack of energy and severe fatigue.I have a Hem appointment tomorrow.
Glad U got diagnosed and getting treatment and everything is going well for U!
God Bless & Take Care;
Randy
Oh thanks so much Randy, nice to meet you I've have readied a lot about you and few others have gone thru and I do My friend send you a hug to, sounds like PV has it good days and bad days to, Yes I know what its like to have lack of energy and severe Fatigue, and pain. Oh my goodness I do hope you are having better days and the sun is shining and making life a little more pleasant. Nice to talk with you hope to chat again soon.

 
Reply With Quote
The following user gives a hug of support to debnz:
Pottsey1 (08-20-2012)
The Following User Says Thank You to debnz For This Useful Post:
Pottsey1 (08-20-2012)
Old 08-20-2012, 06:21 PM   #8
Senior Member
(male)
 
Join Date: Oct 2008
Location: Dublin, Va., USA
Posts: 177
Pottsey1 HB UserPottsey1 HB UserPottsey1 HB User
Re: polycythemia?

About the bruising.U need to be really careful about bumping ur arms and legs.I too had a bruise appear on the back of my knee and was sore and hurt for a couple of weeks.And also;I hit my lower leg on the bottom of a car door and got a big bruise.My blood doesn't clot good and it's hard to stop the bleeding.And the itch drives me nuts at times.I can go from inside to outside and back inside again and the itch is on.I usually itch on the back of my upper arms and legs.UR symptoms all sound typical PV.
God Bless
Randy

 
Reply With Quote
Reply Reply

Tags
body aches, heat intolerance, polycythemia



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




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 04:42 AM.



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!