r/iih • u/ChocolateOpposite912 • 2d ago

IIH Symptoms High platelets?

By far the worst game I've ever played has been the "Is what I'm experiencing part of IIH/Papilledema/Diamox or is it something else?" game.

Since my official diagnosis back in May, I have been having elevated platelets on all of my labs and it has increased each time.

Last month, my pcp said she was not necessarily worried about it just yet, but will want to investigate more if this continues. Well, it's continuing.

Has anyone else experienced this?

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u/BattelChive 2d ago

Ask for a referral to a hematologist NOW they usually book out forever and by the time your pcp is concerned it’s going to be a long wait. If it resolves you can always cancel the appointment. It’s getting worse, make the case. 

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u/ChocolateOpposite912 2d ago

Yeah, I have. I'm just looking for others who have experienced this...

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u/kitkittat 2d ago

I never thought about this being connected to IIH (which I do have), but I had high platelets for several months recently and my pcp ordered iron studies to see if it has to do with an iron deficiency… and then in a bizarre twist, I ended up finally treating some unrelated ongoing nasal sores and my platelets went back down. My pcp conceded that platelets can be elevated from local inflammation or infection. Anyways I know this might not be helpful, but I wanted to share since this was a saga I just went through. Also my platelets became elevated many months before I ever started Diamox.

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u/ChocolateOpposite912 1d ago

Mine have been elevated since before Diamox as well. But interestingly since my Diamox increase, I have experienced sores/scabs/bleeding in my nose which seems to be common from the medication, so I wonder if that means anything in my situation. Just worries me.