Polycythemia?

[Fibo81]

Hi - I am wondering whether I should push for further investigation about the possibility of having Polycythemia. My doctor feels that my symptoms can be explained as side effects of Effexor (which I've been taking for a year), but I'm not entirely convinced, as I was feeling certain symptoms before I started that medication... I experience intermittent flu-like feelings: muscle aches (particularly calves and forearms), itching post bath or shower, night sweats, shortness of breath/ pressure in chest, headaches, heat intolerance, tiredness, dizziness / lightheaded - near fainting a few times recently.

Blood work abnormalities are:

Hematocrit range 35-43, mine at 46

Hemoglobin range 120-150, mine at 153

MCV range 82-98, mine at 101

We have ruled out B12 and folic acid deficiencies. A hematologist apparently reviewed my results and thought to retest in a year. It's been 3 months and I feels like my symptoms are getting worse.

Odd thing was my RBC was normal, and I would think that the red blood cell count would be high if it were Polycythemia? Perhaps I am wrong on that? If anyone has any insight I would appreciate it! Thanks

[Loubprv Volunteer]

Hi.

I would MOST certainly push for a comprehensive test. Your post was at 2.30 am so something must be troubling you.

You know how you feel and not your doctor, in my experience gp's are so inexperienced with regard to orphan ( rare ) conditions, they only look for the obvious.

I was seeing my GP for 10 months with the most appalling headaches and sight disturbance - he could find nothing wrong with me.

In the end I booked myself in for a comprehensive blood test and told the phlebotomist I wasn't leaving until it had been sanctioned.

By the time my results came in ( Nov 2009 - I first saw my GP re the problems in Feb 2009) my haematocrit was 68 and I was told by my haematologist that he was astounded I hadn't suffered a severe stroke.

I'm quite sure this won't be your problem as your haemo is only 46, but GP's are capable of making huge mistakes.

DO NOT take no for an answer, this is your life, not your GP's.

Bang the table in the morning / make a private appointment to see a haematologist who specialises in PV if necessary, but don't wait - it could mean the difference between taking medication, or simply having a venesection every few months.

Better safe than sorry, and if nothing else, it will put your mind at rest which is worth an awful lot simply on it's own. Do let us know how you get on, but don't forget, whatever the result - this is your life, seek the best treatment, and if you're not happy then move on.

Best wishes,

Louise

[skodaguy]

Agree your symptoms are worrying and a repeat FBC would do no harm. As your MCV is raised this will give a falsely low red cell count as once Hb and MCV measured the rest of FBC results are the product of maths not direct measurement. Once haematocrit rises above 45 then cerebral circulation is impaired. Make sure you drink plenty before any repeat test as dehydration makes measuring haematocrit falsely high.

[blulou]

You say 'doctor' while not specifying GP or specialist. If you are not seeing a hematologist, do so. I saw a GP for years with a platelet count in the clouds. He attributed it to various causes. It was after he left practice that I saw someone else who, after seeing my bloodwork, made an appointment for me with a hematologist. PV is not one of the 'sexy' and well known afflictions.

[Fibo81]

Doctor is my GP... My results were forewarded to a hematologist (but I never met with him, as from a different city). GP said hematologist thought to retest in a year (3months ago), but I've never been told what they are looking for, if anything. I have an appointment with my GP tomorrow, as I had a fainting episode a couple of days ago. I've went over my family medical history and recently been made aware that my dads family (his grandpa and his moms siblings) all had blood clots/stroke. I will mention this and ask to have Bloodwork done again to see where we are at. Thanks for the input everyone!

[ABman]

I had dizzy spells 10 years ago, and my doctor sent me to a specialist at the university, who diagnosed PRV. I would say, go for it. It's your health and you need to know so you can do proper treatments for the condition.

ABman

[ABman]

I should add that even with 13 phlebotomies I have had a pulmonary embolism and a heart attack, but I would have been dead without that course of treatment. I've also had 3 aneurisms, and I believe their condition was exacerbated by the PRV.

ABman