Question. Newby here

I was diagnosed with ITP a couple of years ago at 40. I get my count checked every 6 months. It was discovered through regular cbc checks. My platelets go up and down. Not below 100 yet. Last time I went they were 122. My hematologist isn't very optimistic. He tells me it's inevitable. That one day they will completely drop. Could be 6 months. Could be 10 years. Is this always true? He has me scared. Has anyone had this condition a long time without needing treatment? I go next week and my anxiety is through the roof. Thank you!

Hello, yes. I had ITP in 2007 with a count of 7k. Got treatment in the form of prednisone and it worked. My numbers were normal for 13 years until it recurred this last September. So weird. No rhyme or reason.

Ty for your reply. 13 years is a long time! It's so strange how there's no reason for it. They've checked me for everything.

Yeah I had pretty much assumed it wouldn’t come back but it did. Try not to be anxious though. If your platelets drop they will find something to boost them back up. Until then, just enjoy staying at stable numbers

Nsnavely I'm not sure about what your hematologist said, "it's inevitable" - why? What proof?

I've had ITP [at diagnosis count at 11k and dropping & looking like I'd been beaten in a back alley with a 2x4] since 1989. I had to have treatment in the beginning for 4 years (kept my spleen as no one could tell me it was a cure to remove it) - then didn't treat again until 2002 when a tetanus booster sent my count to the gutter. I have decent counts but not in the normal range.


Let us know how you appointment goes.

122 is a great count - in fact I'm not sure my lab would consider that ITP just low platelets.
I think I would want another opinion and a hematologist who isn't so negative!!! I don't think I'd want a hematologist with the doomsday attitude!

Nsnavely
I agree with Mel. Get a happy haemo and one who is upto date with their knowledge

The cut off point was changed from 150 to 100 about 10 years ago, labs just haven’t changed their parameters. I would just get it checked every so often. Treatment rarely starts until a count is below 30. A watch and wait approach is adopted above 30 unless there are serious symptoms such as active bleeding.I was told when I was diagnosed it used to be 150 but it is now 100

www.ncbi.nlm.nih.gov/pmc/articles/PMC3410635/
"ITP is defined as a platelet count of less than 100 × 10⁹/L (100,000/μL) with no evidence of leukopenia or anemia. This cutoff point is new: in the past, ITP was defined as a platelet count of less than 150 × 10⁹/L, which is the threshold for a normal platelet count in most laboratories."

UK ITP Association states "anyone with a count less than 100 would be considered thrombocytopenic".
GP notebook states "Thrombocytopaenia is a decrease in the number of platelets in the blood - it reduces the ability of the blood to clot and is thus a bleeding diathesis. It is defined as a platelet count less than 100 x 10⁹/L (<100,000 per cubic mm)"
I don't think you will be able to access either of them unfortunately as they are UK log in only sites but you should be able to access the following paper

:- ashpublications.org/blood/article/117/16/4190/20799/The-American-Society-of-Hematology-2011-evidence
"An International Working Group (IWG) consensus panel of both adult and pediatric experts in ITP recently provided guidance on terminology, definitions, and outcome criteria for this disorder. Primary ITP was defined by the IWG as a platelet count less than100 × 10⁹/L in the absence of other causes or disorders that may be associated with thrombocytopenia. The IWG based its recommendations for the use of an upper-threshold platelet count of 100 × 10⁹/L on 3 considerations: a study demonstrating that patients presenting with a platelet count between 100 and 150 × 10⁹/L have only a 6.9% chance of developing a persistent platelet count of less than 100 × 10⁹/L over 10 years of follow-up; recognition that in non-Western ethnicities normal values in healthy individuals may be between 100 and 150 × 10⁹/L; and the hypothesis that a cut off value of 100 × 10⁹/L would reduce concern over the mild “physiologic” thrombocytopenia associated with pregnancy"