I may not have ITP After All? - ITP Support Assoc...

ITP Support Association

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I may not have ITP After All?


Last month my GP told me I had ITP. Now, following another blood test he tells me

some white blood cells are low and I should be tested again in another two months.

He now says one test is too early to call it ITP. I might need to see a hematologist. What might he suspect I have?

7 Replies

How do you feel? Do you have fatigue, muscles aches, or joint pains? Did you platelets normalize this time and now it's the white count out of whack?

Egghen in reply to Ltinny

Thank you for your reply. My platelets are just one down - from 125 to 124 in the last month. I have no particular symptoms and feel pretty healthy. My GP printed me out a record of my test results to hand to my dentist.

Ltinny in reply to Egghen

As long as you are feeling well, that is the important thing. I have ITP and lupus. My doctor had me going for blood tests every 2 weeks at one point. It was making me panicky. My lowest has been 37. Six months ago they were 87, I am on no treatment. I couldn't live each day wondering if they were lower and lower; finally, I decided that as long as I felt normal, for myself, I was not going to worry about the numbers as much. Other than some bruises here and there, I had no symptoms. I know my white count was 1.4 when I was diagnosed with lupus, but I was really sick as well.

As long as you are feeling well, try to concentrate on that. Don't let the numbers get you down. I do know that platelet counts vary greatly even day to day. I wish you well:)

"Normal" platelets counts vary widely (150,000 and 450,000 platelets per microliter). Is there any reason NOT to go to a haematologist and get answers from a doctor who specializes in this area? I think that would be better than not even knowing whether you need to be worrying.


Hi I was diagnosed with ITP in August 2017 with a level of 3 at one point peaking at 119. My haematologist is trying different treatments to beat the ITP, but at no point has my white blood cell count been anything but normal. I have a blood test weekly at the hospital and have built this into my routine and don't stress about the counts as there is no rhyme or reason to their numbers. Mine often have a downward trend and because of this, I shall probably have to start another treatment soon. As SoporRose says, why not go and see a haematologist as they are experts in the study of blood conditions, rather than just consulting with your GP (the clue is in the name) who is a general practitioner.

Good Luck (I wish my platelets were as high as yours)!

I have ITP and neutropenia (white blood cells called neutrophils). Diagnosed a year ago. They are both up and down all the time. Both different and both have an impact on my life at different times - roughly equating to feeling below par around 9 months out of 12, but still managing to carry on for most of that time. I've only been really ill for about 3 months / 12.

I used to get checked fortnightly but now 6 monthly unless I notice any changes. Be easy on yourself as you find out more and ask lots of questions. Your count is not too low at present, so waiting two months before getting into lots of checks sounds sensible, especially if you're feeling generally well.

Good luck. Let us know how you go.

Reply to everyone who wrote to me about ITP diagnosis.

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