Platelet counts

[Ribbon36]

I have been reading posts and am wondering if when someone posts that their platelet counts are 4 etc. if they are meaning actually 4 or referring to 4,000?

[Ribbon36]

Ok....I have read some people have reached 0 so I am assuming 4 really means 4.

[tgk62]

4 means 4000

[tgk62]

In the hospital they kept saying my platelets were at 8. I asked how they could count only 8. They meant 8000

[Ribbon36]

I have read that a few people have dropped to zero and survived. Someone I love is dealing with this disease so I am really concerned and trying to educate myself. Thank you for your response!!!

[Visua1ingo]

I have been getting into a habit of saying "10, "8", "66", etc. when talking to my family and friends, since I feel like it gives them a better understanding of the severity, instead of watching them go through the math when you're talking about 140,000 vs. 8,000. I definitely assume 4 would be "4000".

[Ribbon36]

Thank you for your response. It leaves me wondering about the people that I have read that have dropped to zero.

[Robert1959]

Yes zero comes as bit of a shock when you are first told and you wonder what that actually means but like many here who have been that low, it doesn't really make any difference as you just have to be as careful as you need to be at 1 or 2, etc.

When I was on NPlate I actually peaked in the millions for 2 weeks at 1,084 like a few others have also done and the strangest thing was that, aside from the lack of bruising and blood blisters, I felt no different at that level than when I was at 0.

The results of my weekly counts became a real guessing game as I could never tell what they would be from the way I felt.

[Ribbon36]

Thanks so much for your prospective Robert. My loved one seemed to think that when you reach 0, you died. Sorry if I have scared anyone with my honesty....but it has me scared as well.

[scaryteacher in reply to Ribbon36]

I don't think you've scared anyone....we are all very aware of the possible implications of a very low count.

Your relative shouldn't be scared, but it's worth having regular blood tests just to keep an eye, and if there's unexplained bruises, or other signs; for me, it's bleeding in my mouth, or my petechiae rash getting darker, or feeling really tired and fuzzy, then I go and get another one done.

A count is just a number.....I've felt fine at 19, and awful at 52. As for treatment, some have medication, and some don't, it depends on the individual.

Looking at it overall, there are worse things to have than ITP.

[Lin6]

Hi Ribbon36

Iv noticed in the UK we seem to leave the Oooo's off. When I was first told I had ITP my count was 7(7000) it's now 128. We all react to meds differently. Hope your loved one count improves soon.

Regards

Lin6

[PixieKez]

a count of 100 means 100,000 platelets per litre of blood...

[Hidden in reply to PixieKez]

Not quite. It's per microlitre of blood which is a millionth of a litre. So rather more platelets in the body than it seems.

[NickyD]

Hi When my platelets were 0 I had to be extremely careful and was advised not to even brush my teeth in case I started bleeding. When my platelet count was 1400 ie 1,400,000 I was told I had "sticky blood" because of all the cells in my blood stream. I did not feel any different with either counts of platelets and that was years ago and i am still here

[Ribbon36]

Oh Nicky thanks for your post.....it is comforting to hear as well as I am so happy that you are still here!!!!!! Thanks so much for the insight!!!

[tgk62 in reply to Ribbon36]

My lowest count I know of was 8. I do personally know someone who had a count of 0. He is very much alive & doing better with his ITP than I have been able to do. He was able to use only prednisone to get to a safe count & has been staying there even after discontinuing prednisone.

[Ribbon36]

Thank you for your reply! He sounds to be a lucky person. Prednisone is not working for my loved one. He is on both prednisone and takes chemo treatments weekly. Even with both, at week 4 his numbers are dropping. Now down to 33 from 56. Praying that this Friday they start to climb.

I wish you the very best and hope things start to get better for you!! Thanks so much for helping to educate me. I appreciate all the comments from everyone!!

[alice_sportyauthor]

For 16 years I had counts between 7 and 20 ( I usually say '7 per unit of blood', without specifying the unit size, I've found that helps people to understand, its not an 'absolute' number). After the haematology department had tried various treatments that did not work, I declined a spleenectomy and requested to be discharged as I never felt unwell, just terribly tired.

I was discharged with the haematology ward number and strict instructions to 'be careful' and 'never ignore a sudden headache'. I have an agreement with my GP and can phone up and request a blood test any time I feel the need. Dental work isalways a discussion, last time I had an absec

Apart from the tiredness and the amazing bruises I think I functioned perfectly well as a human with very few platelets without any treatment.

My consultant used to say different people with the same count can function very differently.....

[palash199 in reply to alice_sportyauthor]

Hi mam you told 16year itp your count 7 to 20 without med. How you control your period. Plez mam tell me.

[alice_sportyauthor in reply to palash199]

I never had too much problem, they were nearly always heavy & short, and sometimes made me even more tired than normal. Only had to get help from the GP once.

My periods were normal for me.

[palash199 in reply to alice_sportyauthor]

Thanks mam, you are so lucky. Your count 7 to 20 always 16 yearscount

[Ribbon36]

Thank you for sharing your personal story and knowledge. Much appreciated!!! I wish you the best!!!!