pretty new to itp

last year around the beginning of may, after suffering with a sore throat the whole month of april, i woke up with my tonsils inflamed and full of white pus. it became severe and it was hard to eat or do anything, i was in so much pain and it even got hard to breath. after taking antibiotics it disappeared for 3 days and then mildly came back the rest of the year. but as the months passed by i noticed my periods became extremely heavy and prolonged and i was bruising more than ever, but as i am always bumping into things and have always had a pretty heavy period these things really didnt shock me. it wasn't until one day in october 2011 after lightly bumping my thigh that i got a bruise that was so big and dark and had a lump under it that i finally went to a doctor, where i was told i had a platelet count of 33,000. since november it was confirmed that i had itp and ever since then my platelet count is always all over the place! (10,000-100,000) do the platelets ever stay at a regular number or do they change daily??? im almost always feeling tired and getting vertigo, especially the lower my platelets drop even though my doctor told me it had nothing to do with my blood :huh: i've only had maybe a month that i felt completely normal and even thought i was healed, but as of now my numbers shift weekly im only 21, is there ever going to be hope that it will go away? (sorry for the long paragraph) p.s. i don't take medication for it
*also did anyone else come out positive on their rnh- tests?

Hi, platelet counts do vary from day to day and in fact from hour to hour, and with ITP for some they remain somewhere around steady while for others they are always all over the place. With ITP there are never any certainties and things vary from person to person as well a sometimes within ourselves.

Tiredness is now known to go with ITP, sometimes it's simple fatigue and sometimes more sleepiness, and sometimes the two together. If the tiredeness is too great, you may want to consider treating in order to get a more stable higher count but often the side effects of the treatments are worse then the ITP.

What is an RNH test?

Yes, counts can bounce around even within a day. It is possible to to have steady counts, but there is no guarantee. Have you chosen not to treat or has your Dr felt it is necessary yet? My counts were monitored at the 100k range pre-diagnosis. When my counts steadily dropped down to 35k, I was treated with Prednisone which did not sustain counts. Two Platalet transfussions did not work, so Rituxin was the one that is working for me. I cannot say your ITP will completely go away, but you can have safe counts (which vary in opinion) Many ITPers do just fine with counts 30k^. Symptoms vary quite a bit. I have been down as low as 2k, with none of the common symptoms. The only visible symptom I had at first was brusing and that was only at first diagnosis. Alot of us can tell you that fatigue is related to ITP. I think mainly due to the fact that Platelets carry Serotonin, which affects alot of functions in our body.

Just try to relax, what you are experiencing is Normal on this "Rollercoaster" ride.

Understand your frustration!!

Ann, an rnh test, according to my doctor is a test they do to see if you have any other kind of autoimmune disorders, mainly rheumatoid arthritis and lupus...the first time i took the test i came out negative, and the second time i did it i came out positive for both even though i have neither!
Dean, my doctor felt it wasn't necessary yet, considering that i'm so young and all of the side effects it carries. i think they're either waiting to see if it might go away on its own or waiting until i feel bad enough that i'll need to take it.
Thank you both though! its relieving to talk to other people that have itp and can understand that fatigue is not in our heads!!!

Well, I hope your counts rebound on their own!!!! Just remember you are not alone. Prior to my diagnosis I had a crater of a canker sore on one of my tonsiles, at least that is what I think it was. Sure looked like it. Wonder if that triggered my ITP? I had a Bone Marrow Biopsy to rule out other possible causes for low Platelets.

Anti RNP test maybe? It would depend how high the result was for whether it was significant or not. Even then, if you have no symptoms they would just leave it alone and wait and see.

With your counts you don't need to treat for platelet reasons but if you can't live with the fatigue then that may be a reason to treat. You'd have to find a doctor who agreed though and choose a treatment whose side effects weren't intolerable. Rituxan maybe.

Also there is hope that it will just go away. Many cases of ITP seem to simply burn themselves out and the count suddenly goes up and stabilises. So don't imagine that this is it for life. Take it easy for now and pace yourself. Don't set yourself up for failure and plan to do too much. Failure makes us feel terrible. Know what you can do and plan accordingly then you will feel success instead. I just had a week's holiday from work and planned to go out every other day. That way I didn't rush around for a few days and then collapse for the rest of the week and feel I'd wasted my time off. I had a great week.

You could also look for other causes of fatigue. Low Vitamin levels, etc can cause it.

well i do have iron deficiency anemia as well, but i take iron supplements for that...the doctors said my vitamin levels were normal and usually my rbc count is fine, so who knows. well we can only hope that one day the itp will burn itself out! but thanks for the advice guys, i will definitely try pacing myself at work and on my days off :side:

I also have Iron deficiency and taking a prescription for it. I can sure feel it when I have missed a few doses.

i honestly can't remember what it feels like to be completely normal anymore, sad to say haha. between the anemia and itp it can sometimes be hard to tell the which one is affecting me or not, so if i miss a few doses of iron pills its not a big deal for me. i actually only take iron periodically and i usually feel ok. i don't know about you dean but alot of the time i can feel the difference between anemia and itp. they cause slightly different symptoms and the fatigue is different for both.