TOPIC:

So I have a few questions about ITP now that I have done research after my appointment. My doctor basically told me that the cause is not really known. But my question how do you know when you may have developed ITP? Could I have had it for years and just never knew? I had blood test done before back in high school and donated blood in high school (I am now 23) and nothing ever came back about there being anything wrong then so I am assuming it is not something you are born with. I am just confused on why now?

Have a look at this article. It may well help you to get your head around it www.ncbi.nlm.nih.gov/pmc/articles/PMC3410635/

Just remembering my old school question.
I was diagnosed at the same age as yours and was always wondering for how long have I had it?
It turns out that in adults itp usually has an insidious onset and it's hard for one to recall the occurrence of the first unusual bleeding.
the fact that you donated blood shows that your platelet count was normal at that time because a CBC test is a routine procedure for donating blood.
On the question that for how long might you have had itp, it's typically more than 6 months. (for me I believe it wasn't the case)
www.ncbi.nlm.nih.gov/pmc/articles/PMC5060020/
Also, a lot of people already have itp but only after had they have a routine checkup they learn about itp

It certainly wasn't the case for me. I am an extremely clumsy, accident prone person. My ITP reared its ugly head after I fell over a wheelbarrow in the garden and was black and blue from hips to feet, huge haematomas the size of tennis balls on my thighs. 3 months prior to that I had donated blood so I know my count was OK then. However 6 weeks before the wheelbarrow incident I had an horrific bout of viral sinusitis that lasted almost 3 weeks. General consensus of opinion was that was the cause of my ITP.

Not the case for me either - I had to have a gamma globulin injection before my husband's company would allow us to go to Tokyo to look for an appt (why?, our PCP even questioned why the gamma globulin since Tokyo isn't 3rd world) - we each got one, and off to Tokyo. Hot & humid it was, I had on panty hose one day and when I took them off my belly itched, I scratched it and immediately tiny red dots appeared every where I had scratched. Didn't know it but that was the 1st sign I had ITP - and that was about a week, week & a half after that gamma globulin injection. We had had our company physicals a short time before that injection and all my blood work was just fine. I wasn't diagnosed for a few weeks because I didn't go to the doctor after we returned from locating an apartment until I had so many bruises I looked like I had been beaten in a back alley with a 2x4! It was that darn gamma globulin injection that triggered my ITP - my husband had no problem but while we lived in Hong Kong our son was supposed to get a gg injection for a school trip to India and we decided no way was he getting one - all the other shots & pills for that trip but not the gamma globulin and the British doctor we had said with my history she wouldn't give her son one either.

We are all different - my ITP came on quite quickly, some do & some don't. And the only thing sure about ITP is there is nothing sure about ITP.

CarMarie your doctor is right - the cause really isn't know - and to that I would add: in most of the cases. I know exactly the case of mine. You did not mention your count - what was it when last checked? Have you had to have any treatment?

Thank you everyone for answering my questions!

My last count was in the 200 after being off prednisone for a little over a couple weeks. But the lowest it got was 21 (it went up on it’s on to 33 then they put me on the prednisone). I’m a little worried they have lowered again though cause my bruising has returned.

The most annoying thing about ITP is fluctuating counts I'm afraid. Be wary of staying on steroids for too long. Guidelines are maximum of 6 weeks.
"Recommendation 3
In adults with newly diagnosed ITP, the ASH guideline panel recommends against a prolonged course (>6 weeks including treatment and taper) of prednisone and in favor of a short course (≤6 weeks) (strong recommendation based on very low certainty in the evidence of effects ).
Good practice statement.
"The treating physician should ensure that the patient is adequately monitored for potential corticosteroid side effects regardless of duration or type of corticosteroid selected. This includes close monitoring for hypertension, hyperglycemia, sleep and mood disturbances, gastric irritation or ulcer formation, glaucoma, myopathy, and osteoporosis. Given the impact of corticosteroids on mental health, the treating physician should conduct an assessment of HRQoL (depression, fatigue, mental status, etc) while patients are receiving corticosteroids."
ashpublications.org/bloodadvances/article/3/23/3829/429213/American-Society-of-Hematology-2019-guidelines-for
The hyperlink above looks odd but it works

when i was on the Pred for that month I was fortunate not to experience any mood swings or depression. But being out of work for 7 weeks the insomnia and lack of sleep certainly contributed to the massive exhaustion on top of the ITP fatigue. I was staying up all night excitedly awaiting 5 am when Hardees opened for breakfast..ate tons of Marie Callander Key Lime Pies even though I had never had it before..gained like 15 lbs in 12 weeks. The week of my final dose was really bad as far as withdrawal. The fatigue was the worst I had ever experienced. for a day or two there right before I returned to work I found myself actually too tired and fatigued to get out of bed. That is something I had never experienced before. I never imagined that would be possible with me. Luckily after a week or so, while not back to normal, I was able to get back to work. Getting easier with each passing week. I cant imagine having to rely on prednisone for extended periods of time. Years in some cases. My heart goes out to those who have had to. I for one will never again use. I dont care if its the only thing that works, although in my case it didnt seem to work so well.

CarMarie if you are concerned you need to call your hematologist's office and tell them [don't ask] you want a CBC to check your platelet count!! It does not good to worry - get the CBC to find out if you need to worry!
Good luck!

CarMarie
Mel is right. It is your body and you know it better than anybody else. If you want a test you tell them.

I learned long ago not to ask for a count but to say I want a count done. Never have been denied - there is no point in worrying yourself, get a count and then you know for sure!

I was born with it.

CarMarie97
I'm not sure really what caused my ITP, personally. My very first CBC 4 years ago, my counts were in the 90's, technically in the range of low platelets. My doctor at the time did not follow up, and I didn't have another draw until around a year ago when I got sick, and we found out I had ITP. I am pre-exposed to autoimmune diseases (my mom has Hashimodos), so I could have had it from birth, or developed it over time. Something may have triggered your ITP, there is really no way of knowing.