New to ITP advise needed

[Winnie2009]

Have just been told I have ITP also suffer autoimmune thyroid and pernicious anemia along with chronic pain and fatigue and a hernia.dont know if all connected.my questions are, what treatment is everyone taking or what lifestyle changes have you made.i haven't been offered any treatment for ITP is this usual ? I am really in the dark and would welcome all advise. Thanks

[Lynwoodley]

Hi I have never been on any medication my platelets have been down to 29 at the lowest and recently up to 108, I bruise but don’t bleed and I feel quite fatigued at times. I have been taking pre and probiotics since last October and my platelets jumped to 108, I think they may be helping as my platelets have never been up to 108 since I found out I had ITP nearly 3 years ago, they averaged at 42, I run out for about 3 weeks and my platelets dropped right down again (I’m British but go to Thailand a lot ) I have consultants in both UK and Thailand, the Thai Doctor told me to take these but the probiotics have to be a minimum of 20 billion, but the higher the better, but obviously you should always check with your consultants before taking anything it depends on your consultants as to treatment nobody really knows much about it. You just have to get on with life and try to ignore it

[Shoni89]

It would depend how low they go.

My 2yr has been down to 9 and wasn't treated. I was grateful because without treatment he went into remission. However 3 months later he relapsed. While his platelets were low, (as we knew due to the symptoms), he had the pin prick rash and bleeding nose so we knew his platelets were low. Another symptom my son has is what we call "platelet poo" when they are low, his poops go mush and grey and have a distinctive smell we have never smelt before. They say it's not a symptom with ITP but it is with my son! Everytime they get low it happens. Just get bloods weekly to check your platelet level and get your doctor to refer you to a haematologist. We see ours tomorrow, I'm a bit nervous because the poor little guy is covered in bruises.