no treatment yet, should i be concerned?

I am a 20 year old who was recently (july) diagnosed with ITP after finding (and ignoring) patches of bruises on my thighs. I recently moved 2 hours away from my home town and couldn't find a doctor..so i found one and went and she promptly sent me to a oncologist/hemotologist. After blood work, i was diagnosed with tip. my first count was 47k and continues to stay around the same number (but fluctuates lower). Last count was 42k (last month). So far my doctor hasn't done anything except give me tramadol..Should i be pushing for more treatment? I get so dizzy and sick around my 'time of the month' i cant even get out of bed. Any sort of support would be help, i have no one who even knows what this is.

Welcome to the world of ITP, I'd say you have found a good haematologist who knows what he's doing. Unless there's serious bleeding most wouldn't treat at least until the count is under 30 and many would wait until under 20.

My aim at treatment is to be over 30 as that is seen as a safe count so your 40 would do me well. Good luck.

Do you feel comfortable about talking about your menstral cycle with them because there are things they can do to help and if you are bleeding too heavily they can give a hormone pill which you continue to take. I was given it one year because was too aneamic.

They will treat if you are bleeding and under the count of 10 if anything by my own heamo department in England.

Right now I have two distinct but little bruising and likewise concerned as was stiff yesterday though judging from this year the kind of stiffness I get when tired and on 60mg of steroid and low platelets. Hmm. But I have been having a wierd time of it this month - never mind this year and may well ring up tomorrow because I get tired of not knowing.Trouble is my count be high again as some of the bruising was out this morning. I have been told to ring at bruising. But am lazy because it goes away and all the rest of it then I am left questioning.

It is quite normal however of them not to treat unless you are bleeding or under 10.

Hello Jessica, glad you found us. The advice so far is right on. Most would not treat at those numbers. The problem is that the side effects of the treatments can be worse than the low numbers. Your counts are actually pretty good for someone with ITP. I know it can seem frustrating to just monitor things, but it is definitely better than steroids, which would probably be your first treatment.

Have you had your red cells/iron tested when you've had your cycle? If it is low, that would explain the fatigue. Do you experience heavy bleeding (heavy as in having to change pads/tampons every half hour or hour)?

Hello, hope you are feeling well.

When I was first diagnosed by my then primary care physician she admitted to the hospital, but my platelets were over 30K so they did not treat me with anything. I'm on Nplate now, but when my platelets were more steady they didn't treat me unless I was below 30K. Sometimes my periods were heavy, but as Sandi said if you are having to change more than every hour you should talk to them about something. Perhaps a low grade birth control pill may help.

I am this time around having to change about every hour..or less. In the Morning its so bad i feel like i cant even get out of bed or stand up because im so dizzy. I think i am going to call my doctor and see if i can get back on the shot..I was taking depo(before i was diagnosed) for 4 years. The last time i was in the hospital for pain management it was during my cycle and they tested everything and it was normal. He didn't even think i was anemic (although my levels were almost in the lower 30's). Its just so frustrating and no one around me seems to understand. I think my fiancee' finally knows im not lying because im starting to get the spots on my body which from what i understand is normal?

People get petechiae at different counts. Most don't get them until under 20 or 30, but we're all different. I've even had them at high counts from sleeping with my hand under my head (cut the circulation off).

If it's affecting you that much, you could see your GYN about getting some Depo. Some people do that when needed.

What level was in the 30's?

my platelet level was in the 30's. I think that i will go see my gyno

Oh - I thought you were talking about your iron level in the 30's.