Posted: 3/15/2012 4:56:36 AM EDT
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So who here has it and how have things gone for you?
I was diagnosed last week with it and now I'm fighting my MD to find the underlying cause..... All they want to do is bleed me and my wallet weekly (no insurance) with no regard or care to look further than a CBC and H&H. 
I fit the profile for stress poly and I highly suspect I have apnea and have demanded a sleep study to confirm this. I've also ruled out dehydration and high testosterone levels. What else should I do or look for??? NOTE: Still have not recovered from last years tragic boating accident so there's nothing to dibs on. |
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You say you have no insurance, yet you are angry at your MD for not running more expensive tests to "find the underlying cause"?
Does not compute. If you are overweight, thick neck, sleep apnea, snore, then I would say you do not need a sleep study: the answer is pretty obvious. Smoking can cause polycythemia, too. The one lab test I think would be reasonable to add would be JAK2 mutation analysis. |
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You say you have no insurance, yet you are angry at your MD for not running more expensive tests to "find the underlying cause"? Does not compute. If you are overweight, thick neck, sleep apnea, snore, then I would say you do not need a sleep study: the answer is pretty obvious. Smoking can cause polycythemia, too. The one lab test I think would be reasonable to add would be JAK2 mutation analysis. I'm angry at the MD for not even trying to exclude the obvious other possibilities. They ran a CBC as a routine test on an annual physical and flatly declared I had polycythemia vera and wanted to start me on weekly blood donations. All this without examining me for spleen or liver enlargement or pain, kidney function or tumors, or even asking routine questions that would indicate a secondary cause of the polycythemia. Sure out of pocket hurts but I can afford to pay it. The MD just seems determined to stick with a genetic cause when it's almost 90% sure to be wrong based on what he doesn't want to hear.....I specifically asked to be evaluated for stress poly and sleep apnea as secondary causes. I have 100% of the symptoms of each and am a classic example based on my research of the matter, but I'm sure not a doctor so anything is possible. I have one more appointment with this MD and if they still don't listen or seem open to other possibilites, off I go for a second opinion. Thus my question as to how others have been treated medically. |
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If not happy, vote with your feet out of the office. I canned my old urologist after he BS'd me a couple of times. It took some looking into but I identified he crap. Spoke to my new DR about it, he did not elaborate but did not have a favorable opinion about the previous dr. Interestingly, I received a letter from the old dr. stating that he was leaving the practice, letter gave patients alternative doctors to contact for future needs.
Sometimes, you get shitty DR's. Not saying this about yours but it happens, go with your gut. 
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Quoted: Your doctor might be trying to save you some money, speedy... so slow your roll. Or find another doctor if you're that convinced that you and Dr. Google have a better handle on your condition. It's your body, and your money... do whatever you want.  I haven't seen you around recently doc.
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Your doctor might be trying to save you some money, speedy... so slow your roll. Or find another doctor if you're that convinced that you and Dr. Google have a better handle on your condition. It's your body, and your money... do whatever you want. I haven't seen you around recently doc.Been busy... how's the REMF life? 
(It's ok... you'll get used to it) |
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Quoted: Quoted: Quoted: Your doctor might be trying to save you some money, speedy... so slow your roll. Or find another doctor if you're that convinced that you and Dr. Google have a better handle on your condition. It's your body, and your money... do whatever you want. I haven't seen you around recently doc.Been busy... how's the REMF life? (It's ok... you'll get used to it) Meh. What I thought I would be doing:  What I do over there:  |
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Donate blood every 8 weeks. It's free and will help keep your hemoglobin down. +1. My Dad had it. I think he went once a week for a phlebotomy. This is exactly the treatment program recommended. Nothing else, which is correct for polycythemia vera.....the genetic version. I called the local Red Cross and they won't let me donate. |
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What is your hemoglobin? If your doctor won't order a JAK2, you should self refer to a hematologist. H&H was 19.5 and 58.7. This was 24 hrs AFTER a unit donation. Started out at 60.7 a few days earlier. I already have a call in to a specialist for an open slot..........We shall see. |
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What is your hemoglobin? If your doctor won't order a JAK2, you should self refer to a hematologist. H&H was 19.5 and 58.7. This was 24 hrs AFTER a unit donation. Started out at 60.7 a few days earlier. I already have a call in to a specialist for an open slot..........We shall see. That is more than typically seen with sleep apnea or smoking related polycythemia (but not always), so it is very important that you see a hematologist. |