At my wits end

I've been dealing with bruising and bleeding since 2004. My family doctor told me I was just getting older (I'm 48 now). I kept having nose bleeds that would take hours to stop yet when I was young a nose bleed would last a couple minutes, now when I can't stop it I end up in the ER. Through one of my ER visits I was referred to a Haemotoligist and went through all the testing, coagulation assays, bone marrow etc. The only thing they found is a protein marker for cancer that they now monitor. My trouble is, since my platelets clump the Haemo says my blood is fine yet here I am 2000 miles from home in a hotel room with my nose packed because I couldn't get the bleeding stopped after 6 hours. One thing that was different here is when they did blood work they got a count of 35, this is the first count I've had in years.

I do have an ENT who says there isn't anything remarkable about my nose, just the bleeds are very hard to stop. All this is really hard on me, my family and is affecting my work. I feel I need to almost demand I get some treatment to bring up my counts so I don't keep having these bleeds. I'm looking for some guidance on what I should do, any help is appreciated.

Kindest regards,
Barry

I would definately ask for treatment. Maybe promacta or NPlate. They have the highest success rates. The bloody noses are awful. Not the kind of thing you can hide like bruises! Good luck.

Bat:

Usually if a person presents with a count of 35k, the doctor would want to follow up with the patient. Did he just blow you off?

I'm not sure, but I think what the hematologist was saying is that the count of 35 was not a true count, because there was platelet clumping that threw off the machine count. Clumps of platelets were counted as one larger cell.
See: pseudothrombocytopenia
www.bloodjournal.org/content/117/16/4168?sso-checked=true

If this is the case, the platelet count should have been repeated using a different procedure to get a true count.

I am sorry I don't have more to offer. This sounds really miserable.

It sounds like the problem isn't just your nose, right? Because you say you have bruising and bleeding. So maybe you need a workup with a hemo. As Rob points out, it sounds like your platelet count is possibly not accurate. Going years without a count when you have bruising and bleeding sounds weird. Maybe the ENT is treating it like a nose problem but you have a possible blood problem.
Erica