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Could this be polycythemia?

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Old 05-28-2006, 09:06 AM   #1
Join Date: May 2006
Posts: 1
jknits HB User
Exclamation Could this be polycythemia?

Hello everyone.

I am at my wit's end. My mother has been ill for nearly two years now and we have spent thousands of dollars trying to get her diagnosed and we cannot get anywhere.

Five years ago my mother was diagnosed with quick on-set level three hypertension. In Jan. her blood pressure was fine, but by April she was already at level three. They prescribed Atenolol for her, which did nothing to lower the pressure. It wasn't until a year-and-a-half ago that they coupled the Atenolol with Cozaar and she was able to stabilize her blood pressure.

Right around the same time, she started experiencing a spasmodic pain under her left breast. They ran some tests on her and told her everything came back fine, though there was some blood in her urine and they were unable to find the cause of it.

Two years ago she started to experience severe constipation. So severe that she only gets "pebbles" out at times and it causes her tremendous pain. At times, she has mucous mixed in with blood when she is able to have a bowel movement. She has abdominal "fullness" and pain.

A year-and-a-half ago she came down with pneumonia. Prior to the pneumonia, she had never had a lung problem in her life - never so much as needed an albuterol inhaler! She has been a smoker for twenty years. We're lucky the pneumonia didn't kill her. In fact, she was told that she had to be on prednisone to prevent her lungs from collapsing. One doctor even told her that there was no air getting into her lungs. They found some scar tissue on her lungs and told her that it was possible that she had an environmental lung disease. They said her smoking was bad for her (which we already knew), but that the current problems were NOT from smoking. One doctor told her that if she continued smoking she would have emphysemea at sixty, but that would be a long way off (she's 38). They tested her for lung cancer, TB, emphysemea, etc. and found nothing. Right around this time she lost her voice - she hasn't been able to speak above a whisper for nearly 1.5 years. She now complains about having what feels like a "ledge" in her throat. She cannot eat or take her medication without having stuff become lodged in her throat.

A year ago she was diagnosed with acid reflux disease. She throws up bile, though that is mainly under control since she started Nexium.

In November she came down with an excruciating headache and the doctor's have not been able to find the cause of it. The headache is non-stop; it hasn't let up once since it's onset. She has been on vicodin and lortab for it and they have not helped in the least. The pain is so severe that it has even affected her personality.

She still has what we believe are asthma attacks. She cannot be near bleach, perfume, cologne, lotion, hair products, softener sheets, cleaners, flowers, etc. without losing all breath. She has the hardest time breathing when she is laying down. She is currently on Advair (hates it) and albuterol. She has a ruddy complexion on her face now and broken capillaries that she never had before.

A year ago her fingernails and hands turned blue. We were not sure what it could be, but later that night when she sat on the toilet it left a blue stain. I have never in my life heard of anything like this.

She just had bloodwork done the other day and her red blood cell, white blood cell, hematocrit and hemoglobin levels were high. This is what came back:

Red Blood Cell: 5.24
White Blood Cell: 12.4
Hemoglobin: 16.4
Hematocrit: 48.1

Does this sound like it could be polycythemia? I am so worried. It seems like the cause of her headache could be lack of oxygen to the brain, while the cause of the constipation could be lack of oxygen to the intestines. Could being on a diuretic cause her levels to be high? Sort of a false dehydration?

I was told by a nurse the only reasons for a high hematocrit level are: polycythemia, **** (chronic obtrusive pulmonary disease), dehydration or a burn. She does not have a burn and we were told she doesn't have **** (chronic obtrusive pulmonary disease). Also, I had a hospital fax us her blood results from a year ago (June 3) and it turns out her levels were high then, though they told us everything came back "normal."

Can anyone interpret these levels for us? We are getting no where with doctors. Please help us.

Last edited by jknits; 05-28-2006 at 09:09 AM.

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Old 05-31-2006, 06:12 PM   #2
Senior Veteran
Join Date: May 2006
Location: kent
Posts: 1,435
brook65 HB User
Re: Could this be polycythemia?

Hi I am obviously no doctor, but my brother has polythciamia vera. He was diagnosed in his mid thirtys, and his symptoms were, severe headaches, very very red face, eyes, feet, very high blood pressure. After tests they found he had a very high red platelet level, which is when he was then diagnosed.

I am not sure about your mother though, although she has some symptoms of it, she has symptoms which I don't personally recognise as being symptoms. But again, I am no expert.

Can your doctor test her for this particular disease?

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