Recently diagnosed with Itp

Hi I'm Tommy and I am from Kilkenny.. I've only been diagnosed with Itp 3 weeks ago.. My last platelet count was 3 weeks ago.. I don't know if I'm the only person here in Ireland that finds that our doctors don't know much about our condition, it's like getting blood out of a stone.. My energy has completely gone, I'm always tired and fragile.. If anybody knows what works for them I would appreciate there help.

14 Replies

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  • Vitamin d helps and slowing down helps

  • Hi Tommy, Short answer is, ITP is rare and most doctors only know what they have learnt at med school. However don't panic and don't worry. Itp can disappear as quickly as it starts or it can become ironic and you will have it for some time. Only time will tell. Recommend you join the ITP Support Association who will give you very sound advice and help and keep you informed of developments with treatments and medications.

    Fatigue is a problem that most ITP patients suffer from. Severity varies from very little to being very bad. I found it did improve as time went on. As to medication that will depend on your other symptoms. If you bleed then medication is recommended and indeed may be very necessary. The usual start in medication is steroids which are easy to take. They can and do work very well for some and not others, but you do not want to be taking them long term. The side effects are not good.

    Many doctors try and persuade the removal of the spleen. This is an old fashioned approach which only has a 40-50% success rate. In the uk it is only done in around 2% of cases and then usually for other reasons to ITP.

    You must be guided by your haematologist who has ALL your medical details some of which may have an bearing on your ITP. Good luck and keep us informed.

  • Thank you so much for your comment, all ye guys on this website really help me to understand what's going on in my life, I'm finding out more here than from my doctors..

  • Ive had itp for over 11 yr now ive had my spleen removed to no effect ive had 3 bleeds this week alone all of which hav resulted in hospital treatment via blue livhts ambulance

  • useful place 😊

  • I tried papaya leaf tea and homeopathic remedies. Multivitamins with a lot of iron and B12. Do very well count is 229,000.

  • Hi there yes itp is very different for everyone. I have been on all sorts of medication which seem to work for a short period of time and then when my body gets use to it the platlet counts go down again. I have had itp for 12 months now and have been put on the medication of eltrombopag 75mg which has kept the platlet count more constant. Ask your doctor to try you on this medication although it is expensive but your health is important. Good luck.

  • Hi Tommy I'm Georgia in America, you meed to consult a hematologist, you can check out the Mayo Clinic web site, they have great info. And contact me a yoyo0106@sbcglobal.net

  • Hi Tommy it's Georgia again, just returned home after my weekly blood draw (platelet count= 67K), received 650mcg of Nplate so I'm good for another week. You never told me your platelet count. I fell grate in the 60K range, when I drop to the 10K to 20K range I bruise easily, am extremely fatigued, depressed and extremely irritable, and I have increased arthritic pain in my right hip, you are not alone most patients experience many many if not all of these symptoms . You WILL feel better when your counts increase. Did you get a chance to checkout the Mayo Clinic site? You'll like it, let me know, when you reach the end of your rope-tie a knot and Hang ON!!!!!!!Georgia.

  • Hi Georgina. Thank you for your reply. I had already checked the Mayo Clinic, great website for any information. My platelets have been stable at 83 mark with the last 3 months, I had some bleeding from my nose and from my back passage 3 weeks ago which was scary, the lowest they've been was 54 last summer. I know that there's alot of people here who wished there's was around that also.. What gets me down is when I compare myself to the energy that I had over two years ago to the lack of energy I have now. It's scary!! I would love to get back to were I was once before. I hope one day that doctors will discover what causes this disease and hopefully find a cure for all of us.

  • I know when I am getting nose bleeds as I get I fuzzy head not a head ache as such also notice it is one week I bleed next I don't so on its kinda strange but your body is good at telling you this things I listen too it now ... My platelets have never been higher than 60 my hematologist seems to think its OK there at 46 now meds its true you can get hung up on platelets and the rash its true you know when your platelets are down energy drops . ... This site has been amazing I am still learning all the information you need is here and we all are experiencing this disease.... Take care my motto ' what will be will be " my mantra I live by this.

  • Topography52 when I got the nosebleed as I mentioned above my head was also fuzzy, I woke up one morning for work and I felt really dizzy, when I got out of bed I had to use the wall to keep myself up right.. This website is amazing, before I joined I was experiencing somethings for the first time and could not understand what was going on but now when I read the comments I now know what to expect

  • Tbh I find the nose bleeds more embarrassing than anythink my last one was when I was having meal with my friends you have to laugh :))))) luckily it was not a bad one you will learn your coping mechanism and remember you have a extended family now :))

  • No body mentions platelets transfusion which I have had twice and feel better for it. My Dr. Wants me to try steroids but have put it off as I am having surgery next week think Dr. Put you on steroids when they can maybe give you transfusions every few months. I am going to check this out after recovery from surgery. I would like to hear from people who have transfusions.

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