How bad is thrombocytopenia - ITP Support Assoc...

ITP Support Association

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How bad is thrombocytopenia

Lusciouslynda profile image
8 Replies

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. 🙏

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Lusciouslynda profile image
Lusciouslynda
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8 Replies
Anthonyh7 profile image
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 profile image
Lusciouslynda in reply toAnthonyh7

Thank you so much. I genuinely appreciate it

magone7 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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

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