What is the lowest level that your pl... - ITP Support Assoc...
What is the lowest level that your platelet count has fallen to ?
Diagnosed in July 2006 with platelet level of 4. This is the lowest that my platelets have been. They have been in the mid teens a couple of times but thankfully since Rituximab treatment in August 2010 they have remained over 100.
In a talk by Prof. James George, he pointed out that the machines that measure platelets cannot actually differentiate between say 18 and 20 even though it may give what looks like a specific result. I would suggest the size of the categories here are far too close to be reliable. Perhaps 0-10, 11-20, 21-30 would be better etc.
Thank you Howard, I have amended the parameters which will hopefully give a better indication and reflect the fact that platelet measurement is quite inexact. So much like just about everything ITP related !!!!
Lowest count (that I was aware of) was 27
Hello Penno90, I think that you raise a very interesting point when you say ... " as far as I know", because it is the not knowing that creates anxiety, worry, concern, fear. The problem with ITP as I have said many times is that it is so uncertain with the only DEFINITE thing being that NOTHING IS DEFINITE !
My hema told me there was a 20,000 margin of error in platelet counts. That doesn't matter too much when counts are above 100,000, but sure does mean a lot when counts are really low. My lowest was 2000 when admitted to the hospital. It fell from 8000 a few hours earlier that same day. I shutter to think what would have happened if I had not gone to the doctor the day before and requested blood work.
Like you Greta I often wonder just what would have happened had I not gone along to my doctor and had a blood test on the day that my ITP was diagnosed. My platelet levels had dropped to 4 on that day and I only went to my doctor because I had been feeling very tired. I did not realise that the bruises I had been getting for the previous 9 months were in any way significant. All this shows just how important it is to keep spreading awareness of ITP and the symptoms to look for. Thank you for your help in this mission and best wishes.
Hi. I've just joined this site and I am very happy at last to communicate with people in the same position as I am.
I was diagnosed 5 years ago because my then partner was worried people would think he'd been hitting me because of all the bruises. I had never heard of ITP before & put my bruising & heavy periods etc down to just the way I am. I could go to bed at night & wake up with a bruise the size if a saucer on my leg.
I have had no treatment so far (apart from heamoglobulin transfusions before I had a tooth extracted) just regular check-ups at the hospital. I am constantly fatigued but my GP didn't put it down to ITP but that's the only thing wrong with me. Does anyone else feel tired ALL THE TIME??
I wear a medi-alert bracelet and carry a letter from my Heamotologist to advise people of the condition if I ever need emergency treatment.
Now I know where you are - I'll be back. x
Hello Lynnek and welcome to the group. Regarding tiredness and fatigue, it was indeed the reason that I went to my GP for a check up in 2006 and from that I was diagnosed with ITP. I had also been getting random bruises for about a year before diagnosis but it was the constant fatigue which prompted me to go for a check up. Thankfully, fatigue as a symptom in ITP has now been recognised in the European Journal of Haematology following a study which 585 ITP Support Association members took part in. The full article from the European Journal of Haematology can be accessed at .... ...?onlinelibrary.wiley.com/do...
Anyway, once again welcome to the group and best wishes to you.
My lowest count was 1, on the day i was diagnosed, and like Greta and Anthony, i find it worrying to think what could have happened had it not been discovered that day! I was sent to A & E by a GP due to palpitations, and it was only chance that they did a full blood count and discovered the low platelets. I had spoken to GPs previously about petichae but they did not recognise what it was. Feel very lucky that i experienced nothing more serious than a few very heavy nosebleeds and periods and lots of bruising!
Hello Sfo1 and a warm welcome to the group. Are you now in remission?
What treatments have you had? I also had palpitations when I was diagnosed back in 2006 with a Platelet count of 4, and I have had the palpitations return whenever my Platelet count has fallen back to lower levels. I am grateful that since Rituximab treatment in August 2010 I have been in remission. Anyway, best wishes and once again welcome aboard!
Thank you Anthony. I would not say i was in remission, but certainly managing to keep a higher platelet count than before.
I was initially on steroids (for 18 months in total). To the doctors, I appeared to tolerate them pretty well (no weight gain etc) but still struggled with many side effects including anxiety and sleepless nights. The drugs worked to raise the count but as soon as i began reducing, the count went down also. So, on advice of the doctors, I (reluctantly) opted for a splenectomy. Platelet count rose to about 500 in the first week! Then slowly decreased to a normal level and things were fine for around 8 months. I was delighted! I gradually got off the steroids and felt like myself again.
But .... a few months ago, my count dropped to around 80, then 60, then 40. Last check and it had gone up to about 76, which i was pleased with.
The palpitations come and go, and certainly wern't helped by the high dose steroids! As i said in another post, i am keen to keep off the drugs and try other things, as long as my count is not getting dangerously low. I am currently on a special diet as i have always had problems with my stomach and feel i have food intolerances...it will be interesting to see if this has any lasting effect on my platelet count.
So happy to be part of this group and hear others experiences, as it can be quite isolating when no-one knows what you are talking about when you mention ITP!!!!
Hello Sfo1,
I know exactly what you mean about feeling isolated and I felt very much like that when first diagnosed. My wife and I were amazed that our local hospital, GP and even some of the nurses who took my blood samples seemed to know very little about ITP. I came to learn that this was the case across the board with knowledge and awareness of ITP sketchy even amongst health professionals. That is one of the main reasons that I got involved with the ITP Support Association and I set-up the ITP Support Association Facebook, TWITTER , LinkedIn and HealthUnlocked Groups. It has helped me to know that other people have gone through some of the things I have experienced and may go through in the future. I just hope that other people feel that it helps them too !
I really hope that your platelet levels settle down and that your special diet helps. Please do keep in touch. Also just to mention that the ITP Support Association are currently funding a food intolerance study being undertaken by Addenbrookes Hospital, Cambridge so we are hopeful that they may provide some useful conclusions. For details of the study please see the website at itpsupport.org.uk.
Best wishes
diagnosed in 2004 while on hoilday abroad,spanish doctor knew something was wrong ,but just advised me to get blood tests when i arrived home in England,i did that and was admitted to hospital for 3 weeks as platelets were 4 ,was given a lumber puncture to check for other illness. was put on steroids and had platelet transfusions and immnoglobian transfusions.
platelets when up over tim to 50 plus so was discharged with no real advise or help . received lot of help from the itp support group and still find it very helpful.
over the years platelets have drop to single figures the lowest being 1 that being the worst experience ever, was bleeding out and was rushed straight to hospital, platelets don't seem to raise over 40 at the Min so am booked into hospital in feb of 2012 for A SPLENECTOMY, feeling nervous but realise i t may work for me as other treatments failed x
Hello Andrea and a warm welcome to the group. I just wondered if you have had or discussed Rituximab treatment ? I imagine that it is something that you have considered but just wondered. I have been lucky in that Rituximab has worked for me and I have been in remission since August 2010.
Anyway best wishes
My lowest count was zero, I was admitted to hospital straight away. Anthony I would be interested to find out out what the highest count is that some people have.
I know the fear of a low count but there are also risks associated with a high count.
i am pleased to see i am not the only person who has had a count of 0. i was diangosed in december with 0. Have had a count of 1 for 2 month of this year and as of yesterday am back to 1 but i have still have not been admitted to hospital. Start romiplostin in 2 days so fingers crossed.
Hi there, how did Nplate work for you? Hope you're well! My father starts Nplate next week at a platelet count of 10.
What if your platelet count is 31 Is it dangerous?
It is not possible to say for absolute certainty what is a dangerous platelet count level as we are all different and experience different symptoms at different platelet count levels. So one person may get no symptoms at all with a platelet count of 31 and another person might get bruising and bleeding at around that level. Generally bruising and bleeding is usually more likely to be seen once the count dips below 25 but as I say we are all different. That is why specialists/doctors will look at the platelet count and any other symptoms you have because platelet count alone is just one indication of how your ITP is going to present itself/affect you. So it is key to watch out for the symptoms.....a full list of the various symptoms is available at ....itpsupport.org.uk/index.php...
Did anyone find that after remission, if platelets dropped again, they dropped to the same level as the first time; or was the first drop the lowest?
Also - are symptoms generally the same each major drop? I was called into hospital at 11 and with a full body covering of pinprick spots. Am now up near 200; and I'm wondering if I have another dip whether my symptoms will be similar to last time.
Lowest I have had is 0 count for over 6 weeks. My count is very unstable it was 45 on diagnosis and last count was 12, I have been as high as 3500 and when that came back we were so shocked as the week before I had been 10! They tested it 4 times . Mine Yoyo so much I have been diagnosed 2 years now.
So I have been in hospital for the past 6 days.. When I was admitted, my platelets was on 4.0 and after receiving 2 platelet transfusions, my platelets was on 2.0. So it got the doctor worried, they did another test and today it is on 0. Now here is the weird part, even though I have no platelets now, as they say, I am not feeling tired, fatigued, not bleeding, no pain, the bruises on my body is healing, and they put me on steroids today and will be transfusing 2 more platelets. So I do not get it? How am I completely fine, if I have 0 platelets? When I was admitted, I only had bleeding gums, blood blisters in my mouth and the random bruises on my body, but small ones.. As I mentioned earlier, all is healed, except the bruises, since it takes a while, but I have 0 platelets? I can still walk, talk, eat, run, ect. So what does 0 platelets actually mean?
Hi, I'm very sorry that you have to go through this,itp is awful. My count 2 days ago was at 30, today is at 11 and possibly in the next two or three days it will reach 0 and i have to say i'm quite scarred. The lowest i had it was at 3 and i , like you,had no severe bleeding episodes. Unfortunately i've been to the hospital several times and they didn't do anything,just sent me home. I was wondering if the hospital maybe told you anything when your patelets dropped to 0? I'm very scarred of internal bleeding especially in the brain and i just wanted to know if they maybe have told you anything about it now. Could it happen even if you don't hit your head? I'm sorry to be bothering you,and i knpw you are asking the same question-what does a count of 0 mean- but maybe the hospital has told you something by now. I really hope your platelets will soon go back to normal!
My 3 year olds count was 8,000 today and Dr referred us to a specialists today and I'm so worried for her.
Hi I was diagnosed with ITP on February 5th with platelet level 3. Showed all the sign of blood spots under skin blood blisters on lips bruise legs after sleeping even weight lose. Went GP who referred me straight to hospitial. Spent 3 days in there and bout 20 blood test later my count raised to 22. I was put on predisonal steriods and tamiacid. 17 days on my last result showed I was at level 94. Seeing a blood specialist and at present they are very baffled as why I dropped so low as all my test have come back negative. But I have been told I need to stay on steriods till I’m up to like 150 level then will slowly start lowering the dose to see if they drop. Fingers crossed they don’t. So anyone going through the same I hope things work out for ya and ya platelets rise. Also think it should be made more aware as can be very dangerous at low levels if not spotted and treated. I would say just look out for signs of low platelet but everyone is different but easy bleeding and blood spots under the skin are very common in low platelets.
Many members report platelet count of zero, the lowest I’ve seen in Hem/Onc patients is 2K. I’m having difficulty finding any results in the literature, can you help????
Hi,
My 4yo daughter was diagnosed with ITP when he platelet count was 12 back in Feb; it slowly went up to 28 over the 3 weeks that followed, but has since slipped and her latest reading 1 week ago was 4.
An appointment finally came through to see a blood specialist at Addenbrookes, but it's not for 2 months. We were previously advised that she couldn't attend nursery if her count was below 20, but after complaining about the delayed appointment the doctor on call told us my daughter would be fine to go to nursery, and start school in september and go about her daily life as if her count isn't low, it's worth mentioning she is now also anemic.
Has anyone else had a problem like this? We feel stuck, and as though nobody can really give any information on how to look after her etc...
James.
Mine was 4,000 but it steadily went up after treatment (I'm not on anything now and it started June 1) in this progression: 6, 11, 60, 261, 340, 261....first monthly test this Friday - hoping for another normal count!
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