Fluctuating platelets

[atoni2]

Over a year platelets ranged as low as 126000 and at other times between 160000 to 171000. Did any one else start out like this and than get worse. All other numbers are in the normal range.

[NickyD]

Hi In one week my platelets went from 3000 to over 973,000 for no apparent reason. Over 18 months my lowest count was zero and my highest was 1,440,000. You will learn that your own fluctuations are personal to you. Remember you can have major surgery at 70,000 so you do not have a lot to worry about with a count like yours. Nicky

[technogeek in reply to NickyD]

Your 973 is quite high and your 3 is very low. Normal range is 150-450. But fluctuations is the nature of the condition. My count swings wildly too but the swings occur before and after treatment. I have been on a course of Rituxan every 6 months or so and try to avoid having to dose on steroids. Since Rituxan works so well, my doctor now wants to spread out my treatments to one dose every 3 months as a method of normalizing over time and not waiting for my platelets to drop. Best of luck to you NickyD

[scaryteacher]

Those are about normal range for non ITP, apart from the 126k, which is slightly under. Mine range from 19k to 38k at present. At diagnosis in 1995, they were about 80k, so have fallen over the past 22/23 years.

[HDuggan]

Mine started around that range and gradually dropped over the course of a year. Within that year I went from 120,000 to 16,000. They never improved and only went down without the aid of steroids

[atoni2 in reply to HDuggan]

I get blood drawn every 3 months. Watch and wait I guess. I just want to make sure they are not missing anything.

[atoni2 in reply to HDuggan]

Thank you for your reply!

[HDuggan]

If they start to drop more they will increase the blood draws. I started with once monthly then went to weekly. Just had a splenectomy so hopefully my platelets will hold and no more weekly blood draws.

[atoni2 in reply to HDuggan]

What did you present with that the doctor decided to check your blood regularly?

[HDuggan in reply to atoni2]

It was accidental. Started getting regular CBC's from my gp because he had prescribed some meds. I noticed on the patient portal that my platelets were steady dropping over that year (would go down about 20,000 every other month). I got very very ill with recurring strep throats last year and another doc checked my CBC and I had dropped to 16,000. Was sent to oncologist/hematologist for more testing and she decided it was ITP. No bone marrow testing needed. I responded to steroids but as soon as she would take me off I would drop drastically. Hence I had a splenectomy to help. She is weening me off steroids now. Fingers crossed my numbers hold.

I was diagnosed from my CBC's but looking back these were my symptoms:

1. Weak

2. Fatigue

3. Bruising

4. Sick all the time

5. Winded

6. Cold all the time (sat and slept in front of a space heater even in summer)

7. Lost weight without trying

8. Dizziness

Hope this helps

Hilary

[Doris61]

yes my platelets would go down to 85,000 and that was normal to me. Until I had to have 3 units of blood my doctors didn't think anything of it. I now see a hemotologist and have since 2010. My doctor told me not to worry about it until I get below 50,000 then they would treat the ITP. I do however have iron infusions about 3 times a year.

[atoni2 in reply to Doris61]

Thank you.