Itp

[DanielleR93]

Hey everyone could anyone tell me what their itp started out like please much appreciated 😊

[Robert1959]

The first thing that I noticed was that I had small amounts of blood whenever I blew my nose, then I started to get red spots on my shins (which I now know were petechiae) and finally large unexplained bruises on my legs and torso - this all happened over a 1-2 week period. I didn't feel sick but I knew that something was wrong and so went up to the hospital where I was admitted with a count of 9 and diagnosed with a mysterious illness called ITP which affected these strange cells called platelets, both of which I had never heard of until then.

[DanielleR93 in reply to Robert1959]

Thankyou for your reply Robert. I first noticed the petechia in my mouth then I started noticed them on my arms and legs very very small but I can see them! I went to the docs about this they done a full blood count and everything was normal that was about 3 months ago I keep going to the doctors and asking and they are just telling me nothing is wrong I'm getting myself so worried about this surely I'm not getting this for no reason. I also get blood when I blow my nose aswell it's not actually a nose bleed I ever get it doesn't come out my nostril and such just when I blow my nose.

[Lynwoodley]

I found out about 7 months ago I had a lot of bruising and felt tired all the time so I had a blood test that was 33 so had further blood tests. My blood has ranged from 33 to 106 but averages at 52. I have not had any medication I'm just being monitored but find I bruise more if my blood is under 50

[Lin6]

I was on holiday last year in France for a month, noticed blood spots over my feet n legs, then the bruises started and nose bleeds, at that point I was concerned as i never have them. i went to my doctors on return and within a wk I was diagnosed with its blood count was 7!!!

Lin

[scaryteacher]

Blood test when I was pregnant.....the ITP has never gone away since. 21 years now.

[Jordan1991]

I noticed these small spots on my feet, the next day I noticed it had spread to hands and I woke up with a nose bleed that wouldn't stop, the colour of the blood was darker than normal too! I suffer from nose bleeds anyway so I didn't worry too much about that, not until 2 hours into the nose bleed that is! My partner took me to hospital and they did a blood test straight away! That's when they told me my platelets count was 2! I was shocked!! Though with the right meds you'll be better in no time! It's been 3 months and my plateletts are 100+ hopefully they stay that way! Good luck to you!

[LifeafterITP]

I had noticed a couple of unexplained bruises, one after another, also had to shave carefully to stop getting small cuts. Had the classic red spots on my ankles and small blood blisters in my mouth. But amazingly despite these signs I felt 100% healthy and carried on for about 2 months as normal. One weekend my gum started bleeding and did not stop for 36 hours. That was it, I needed to find out what was going on so made a appointment with my doctor. My doctor took a blood sample and 6 hours later I was admitted to hospital feel confused and bewildered as I did not feel ill. My platelet count was 2 and the hospital doctor said I was a ticking time bomb and they needed to keep me in till my platelet count was up to a safe level.

[DanielleR93]

Thanks everyone I'm totally bewildered as to why I'm getting these and all my bloods came back fine is there anyway maybe it was too early and it did not pick it up? I get these blood blisters in my mouth in my mouth I can go days without having any then I get them again get bruises on my legs but it's not a lot of bruises I noticed last night I had a bruise on my knee with a purpura spot inside the bruise I have been to numerous doctors and they keep telling me it's fine it's nothing to worry about as my bloods came back fine I feel like i am annoying them who else am I meant to go to if the docs are saying I'm fine I know this can't be normal! I'm so worried about this it's all I think about as I'm only 23 with a little girl at 1 years old

[LifeafterITP in reply to DanielleR93]

Your doctor can surely give a better explanation than " it's nothing to worry about " . If you are worried about having ITP ask your doctor what your actual platelet count was from the tests they have done. If your count is in the range 150 to 400 it's normal. However most people with counts as low as about 50 only need monitoring. If your count is in the normal zone something else may be causing your symptoms.

[lc12345 in reply to DanielleR93]

I heard once that not all laboratories can detect low platelets correctly. At ITP they don't disappear, just change shape dramatically. Maybe modern machines can still pick this up. Though for the peace of mind I would ask for a referral to hematologist.

[mcewan12345]

Hi I was diagnosed after a mystery illness causing nausea and headaches after numerous tests at Doctors i was diagnosed with low platelets around 45 then sent to hospital where I was again given all sorts of tests to rule out underlying conditions nothing was discovered and I was told i have itp i am monitored 6 monthly but i dont have the usual symptoms of bruises, nose bleeds or red dots does anyone else have platelets around 45 and none of the usual symptoms?

[Lynney11 in reply to mcewan12345]

Yes, I have a count of around 50, and the only symptom I have is unexplained bruising and gum bleeds when brushing my teeth.

[debra091000]

A lot of bruising and bleeding when brushing my teeth and blowing my nose.

[eciardullo]

Unexplained bruising...one to be specific got uglier more colorful and bigger by the day. My roller coaster ride consisted of prednisone, IVIG, splenectomy, revolade, rituxamab...Finally off all meds with a count over 200 for close to a year. I hope you have seen a hematologist he was the initial diagnosis of 2...l see him on a regular basis now. I thank God this has been a terrible ride finally off the roller coaster hopefully for good..All the best to you...God bless...

[Pollyangel]

Three very large unexplained bruises... legs covered in little red dots...

Didn't worry to much about the bruises... thought the rash was an allergic reaction to something...

No... nothing so simple... zero platelets... trigged by a virus...

[Lynney11]

My ITP was diagnosed after I mentioned during a routine doctor's appointment that I often got large unexplained bruises, which had gone on for some years. He tested my blood and lo and behold my count was about 60. It was after I had further tests at hospital that ITP was diagnosed. This happened in 2009. My doctor then told me that my platelet count had been reducing for a number of years, but because I had never mentioned the bruising, it went unnoticed. It seemed to start reducing after an operation to remove a brain tumour in 2001. That was probably the trigger. Incidentally, in case anyone is wondering, the tumour was benign and had been successfully removed.

[tgk62]

I started bruising, extreme fatigue, bleeding gums. I had over 50 bruises of various sizes. Popping up everywhere, even the bottom of my feet. My count was 8 & my BP was very high. The dr. office called to tell me to go to the ER, they were waiting for me.

[hassell83]

mine started out with petechia, they are red dots, they started at my feet, plus I had some bruises on my feet. plus my count was down to 2, then I ended up in the hospital for IV`s.

[lc12345]

Started with a lot of petechiae on legs below knees and feet. Spread to chest and had one odd bruise on my cheekbone

[Zaff]

I noticed huge unexplained bruises first which continued for a couple of days then a 'rash' on my lower legs which I now know were petechiae, the doctor took a blood test that day and the next day phoned to tell me to go straight to hospital as my platelet count was only 9, really scary at the time

[janebrandi]

Gee seems like I am the Grandma in this group. I am 62 and just diagnosed in November. I had a sudden bleed from my gums while flossing (very unusual for me) it would not stop until I took a paper towel and held pressure on my teeth. I insisted that my doctor give me a lab slip to test my platelets (I am a nurse so I knew it had to be low platelets) My count was 36. I was referred to a hematologist. Turns out when she looked at my routine testing since 2008, my platelets have been steadily going down. I had noticed lots of bruises, without having bumped or injured myself. It was like every night when I got changed for bed "Oh hello, where did you come from?" Been sent for tests and everything is normal except my platelets. For now it is a watch and wait game. no need to treat with a count in the 30's if you are not having active bleeding. Hope you get your answer. Good Luck.

[DanielleR93]

Thanks to everyone for all your replys I really appreciate it. I went to the doctors about 2 weeks ago and they are refusing to take my blood telling me it's normal I'm going to see another doctor tomorrow I have pictures of everything so I'm going to show her and demand another blood test!

[Darby17]

Mine started after having a cancer surgery. I developed a few blood clots so I started taking Xerelto. I developed an allergic reaction, foot/ankle swelling and red spots. Then switched to Coumadin for several months. Stopped taking a blood thinner and discovered four months later my platelets dwindled to zero❗️I never had any problems before all this.