How bad is thrombocytopenia

[Lusciouslynda]

I have had numerous blood tests and now have a telephone appointment with haematology. My blood results do mention my platelets and suspected thrombocytopenia. I am absolutely terrified. I have COPD and controlled epilepsy. I would really appreciate and advice and information please. 🙏

[Anthonyh7]

The best and most reliable sources of information are as follows -

1. The ITP Support Association UK - itpsupport.org.uk/index.php...

2. The Platelet Disorder Support Association USA - pdsa.org

Other useful links are

1. You Tube Channel for the ITP Support Association - youtube.com/channel/UCRkHWf...

2. You Tube Channel for the Platelet Disorder Support Association -

youtube.com/channel/UCa304q...

Hope this all helps

Best wishes

Anthony

[Lusciouslynda in reply to Anthonyh7]

Thank you so much. I genuinely appreciate it

[magone7]

Hi Lusciouslynda, thrombocytopenia is nothing good but we can live with it. And quite well. I guess the main thing is to find very good specialist.

[NickyD]

Hi Lusciouslynda My platelet count has been as low as nil and as high as 1440 and I am still here. You will find this forum very supportive. Its a very hilly journey you are about to go on, with lots of ups and downs, but we will be with you hand in hand (figuratively) all the way. Nicky

[DevonMaid1]

Hi, please do not be terrified, the links offered below give you a good insight into the condition. You can live quite happily and normally with ITP. I have been on treatment since before Christmas, a few side effects of the drugs I am on. You will get a lot of help and reassurance from the hospital if they do diagnose you with ITP. You obviously have a few health issues to deal with already.

Take care and best wishes x

[janran]

Hi It’s all a bit overwhelming when you get a diagnosis of a potentially life threatening condition and I felt terrified too at the start of my treatment.

10 years on I’m generally well and ITP doesn’t impact on my life that much. I don’t have any bleeding symptoms until my count is really low (under 10) and even then it’s just bruising. I respond really quickly to steroid treatment and occasionally need short courses to bring the count up. I don’t worry about ITP so much now and it’s just a case of being aware and watchful for bleeding symptoms. It may take a little while, but once you find a treatment that works for you and you get used to how your body reacts to the ITP, you will feel a lot better.

This forum is really good for offering support and advice so if you have any questions it’s always a good place to start.

Kind regards Janet

[MaryAnnITP]

I have had ITP for 27 years 10k-87k. My advise to to determine the following-platlettes getting destroyed by spleen or in spinal fluid

-read eat by your blood type

-mine is O

-mega foods blood builder

-eat organic vegetables

-eggs fish

-emotions and stress also pay a factor

-acupuncture as long as your above 50

-keep reading questioning and be your own best advocate.

-Keep Excel spreadsheet of all bloodwork

-Breathe

[HOLCOTT]

Hi LyndaDon't be terrified. What are your platelet counts and where do you live?

UK has access to good treatments beyond steroids.

Steroils are effective. A lot of people live with v loqckatelets quite happily and not everyone has symptoms. I hardly bleed and platelets bob between 10 and 70 sometimes with the help of steroids and at the moment am trying romiplostin which is working. . A little bruisy. I play sport happily take care