# confused

My platelets bob from 21,50,60 at its highest no medication, I only have weekly FBC,is this OK ???? I have always bruised easily and get infrequent nose bleeds, fatigue ,lightheadness, I contacted shingles December 2016 are all working on this being the culprit I am very confused by this illness are these symptoms all part and parcel of ITP one of my blood test was borderline auto immune can only have this blood test repeated in march ( every three months ) It is a long time coming I need answers : (((( so glad I found the site I had never heard of ITP before what made me smile my consultant told me I was special so that is how i look at this illness you have to be special to join .

10 Replies

  • The signs of ITP are unexplained bruising, nose bleeds or gums bleeding, blood blisters, fatigue, petechiae. I don't display visable signs of low platlets until my platelet count is virtually zero. Signs of fatigue reduce when my count is over a steady 40.

    Although I'm on Eltrombopag... my count is eratic so I'm attending haematology every 2 to 3 weeks to get my bloods checked.

    I've had ITP for 2 years now... after reading advice on here I stopped fretting about blood counts and getting back to "normal". I'm fortunate, I have no underlying health problems so it's only ITP I need to concern myself with. I function well when my count is a steady 40 / 50, I still get tired if I do too much so, I plan work and social events and nap when I can.

    It's easy to tell you to relax and go with the flow, but you've just been diagnosed and your entitled to have a bit of a wobble. Your blood count hasn't been disastrously low, but don't make plans for bungee jumping or cage fighting just yet... lol...

    ITP is a bugger. There is little known about it and everyone has a different reaction to treatment. So you'll not get a clear defined answer. Take comfort in the fact that it's not terminal or life threatening (unless you are bungee jumping or cage fighting with a really low count!).

    Read stories and experiences from the network of people here. I found it a great help and gave me a perspective on what I was dealing with.

    I hope this helps and good luck xx

  • I have no bunji jump planned : )))))

    I think it is because you always expect your bloods to comeback as normal, it will all come good just the do,s and don't of this disease getting your head around it I find it really hard as I am active were as now I tire easily but hey ho once I know my limitations it will be ok ..... Thank you for your reply : ))))

  • I tire much more now

  • Some days I feel good others days bah I guess the sun would help but in good old Blighty England no chance : )))))

  • Well said Polyangel. Very sound advice for a new comer to this condition. Yes TOPOGRAPHY your consultant is right. We are all special. It is a rare condition and few consultants for that reason, fully understand how to deal with it. Sounds like you have a good one.

    Keep smiling, it may well settle down with a steady count when the body and immune system decides what it is going to do. How long this will take is unknown. I lived for over 10 years with a steady count of 10 and annual blood checks (FBCs) but I was lucky, I did not bleed for no apparent reason. Since taking eltrombopag to raise my count to 100+ to enable me to have a quod heart bypass three years ago, for some reason, my count has slowly but steadily improved. At last test it was 70 so later this year it may well have risen again. What I am saying is, there is always hope that your body will decide not to attach and destroy the platelets.

  • It is very strange I had a bruise on my left thumb yesterday appears to be spreading down my arm who beds telly : )))) who needs tv .. Thank you for your reply all help.

  • I feel vitamin c helps the bruising along with antioxidants

  • I don't think it matters what the trigger was for the ITP, but what happens once you have it. You learn to see and listen what your body is telling you....in my case, I get petechiae and a blood staining rash on my feet and lower legs, and get very tired. I get the taste of iron in my mouth. I go and get a blood test done then if it's a while til my next one.

    You learn when you have a good day and stacks of energy, and to use it. For me, it takes longer to bounce back from things, so last year I had shingles followed by a virus followed by a really low Vit D count. I effectively lost the first three months of last year, and spent my 50th birthday in bed with shingles.

    My plan is to avoid meds for as long as I can, until I really need them.

    I don't think there are answers with any autoimmune disease, just questions; and you have to learn to live with it. I forget about it for majority of the time, but it catches me sometimes when I do a long drive back to UK and down to the SW to see my Mum, and then reverse the drive a couple of days later. It takes me about a week to bounce back from that one.

  • Kyriak51 here: Who is treating you? GP, Family practiced or hematologist? You need a diagnosis, counts of 20K to 60K is not normal. I have not heard that ITP is caused by shingles. Shingles is caused by chickenpox. Go to Mayo Clinic web site for information. Good luck.

  • Hematologist is treating me my platelets are hoovering not too hung up on it I am in good hands I have a plan of action if I feel out of sorts : ))))

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