Misdiagnosed?

[osuguy45]

Has anyone been told by your primary care doctor that it looks like from all your blood work (done 3 times) that you possibly have PV and they would like for you to see a Hematologist.

When you see the Hematologist - after drawing blood twice they state that they do not think that I have PV but think I have Sleep Apnea and I am Dehydrated?

Thoughts?

[lizk1993]

Hi there, Don't think any of us in this forum are in a position to say whether you've been misdiagnosed, but I do know there is a proven connection between sleep apnea and high red blood cell count. For two reasons, if I were you, I'd head back to my primary care doctor. The first is that the haematologist will have reported back to your own doc, who should be able to explain to you why they've reached the diagnosis they have. Secondly, if you do have sleep apnea it would be best to have that investigated and treated. Worrying time for you, so hope you can get an explanation of things. Good luck

Liz

[HardwareHarry]

It’s possible that they are both correct; polycythaemia is characterised by an excessive number of red blood cells in the blood - this can be caused by an inability to control red blood cell production due to primary polycythaemia (polycythaemia vera, or PV), but it can also be a side effect of another illness - this is still called polycythaemia (which describes the red cell condition) but in this case it is called secondary polycythaemia.

There are quite a few conditions that can cause secondary polycythaemia - mostly involving hypoxia (sleep apnea being one, also COPD or heavy lung damage).

There is also a third type of polycythaemia called relative polycythaemia, where the red cell count is actually OK, but the volume of blood plasma is reduced, thus making the red cell count proportionally higher than normal. Causes of this type include dehydration.

The immediate risks of all types of polycythaemia are similar - increased chance of blood clots, side effects like fatigue, and many others, but whereas primary polycythaemia is treatable but incurable, secondary and relative polycythaemia can be effectively eliminated by addressing the underlying illness that is causing the effect.

So, apologies - long post with lots of information, but the bottom line is that it sounds like your GP and haematologist are working to sort out the cause of your problem so that an appropriate treatment can be found. This is unfortunately sometimes a drawn out process but at least your red cell count can be controlled in the interim, removing much of the risk until a long term treatment plan can be made. Uncontrolled polycythaemia is nasty, whether primary, secondary or relative but you are luckily not in that boat anymore.

Definitely worth talking to your GP and your consultant more on this and getting them to explain as much as they can, and doing research on trusted medical research websites. Much information on polycythaemia is focused on the primary derivation but if you search for secondary polycythaemia you’ll find plenty of background information.

Hope things work out for you and you can get the information you need.

Paul.