Hi Aim, my initial though about polycythemia is combustion appliances / heater / fireplace in the home that either are malfunctioning or have a faulty flue system (partially blocked, corroded, or not simply not properly placed or installed). Also, any heavy smokers in the home? It would be prudent to perform a blood test to look for an elevated carboxyhemoglobin level. Even in summer situations, carbon monoxide can be a hazard that people don't think about, such as a faulty situation with a gas water heater located near the air conditioning intake area. Of course, the exhaust systems in cars can go bonkers posing risk as well. Do you think that carbon monoxide could be a factor?

hi antiquerose, I had not thought of CO being a factor. I am not a smoker and either is my husband. We do live in a condo that we rent and the gentleman before us was a heavy smoker and sometimes we can still smell the smoke. (especially in our daughters room) We are in the process of getting a loan to find a home but for us it is taking a little longer than what we wanted.
I was thinking more on the lines of bone marrow dysfunction. I do get bone pain but I had been contributing that to the vitamin D deficiency. I don't know I am hoping that the Internal Medicine doc can tell me more. My head hurts too much right now to think.
Have a blessed night and thank you for responding. Aim

hey guys this topic has come up several times before - it is looking like a trend with IIH.

It needn't be a heavy smoker or carbon monoxide poisoning - it could be sleep apnea, or renal issues - both IIH factors or it could be a respiratory issue like chronic bronchitius or relative polyythemia - an increased concentration of blood due to dehydration? after all you did say the reading was only slightly elevated??

look at this link for secondary polycythemia - polycythemia is actually quite rare and you are a bit young for it Aim - it usually kicks in around 60! ;)
http://www.medicinenet.com/polycythemia_high_red_blood_cell_count/page4.htm

if you want to read the old threads on this type polycythemia into the search bar....

should have started on this page
http://www.medicinenet.com/polycythemia_high_red_blood_cell_count/page3.htm

Ha sleep apnea....makes sense :) Can't wait to get my study done :) End of the month :)

KarenC, you are on the right line of thinking. At 49 and 51, I suffered with ptc. Never thought it would happen again. At 61, I was diagnosed with Polycyethemia Vera. The symptom is a bad blood test. The diagnosis is made with a test to verify that the jak2 gene has mutated.
Now at 63..almost 64, the ptc is back! I am 30lbs. over weight and determined to loose it. I have started treatment with an ophthalmologist and a neurologist. I'm on 1000mgs of Diamox.
I don't know if my neurologist knows what he is doing. He ordered a lp, pressure was 20. He wanted 80cc of fluid, they could only get 65 after over1 hour! now he wants to order another one.
I will see if I can find a proper category to ask questions.

Hey Aim,

Interesting... my RBCs and platelets are elevated and WBC ....
and in Aug my neuro told me he thinks I have Erythromelalgia running parallel to my IIH (started at the same time, is worsening also, but he is not going to manage it as my situation is too complex as it is).
Well, since, no one else (my health care providers) are looking into this, I thought I needed to. If you look up Erythromelalgia, it can be secondary to myeloproliferative neoplasia disorders, and Polycythemia is one of them....

Also possible that dehydration caused by diamox or topamax could cause the slight elevation in the readings.

hypoxia from sleep apnea can raise the hematocrit. mine has always been high for a woman, but after I started treating OSA, it normalized.