Basically on and off for a few years now I have had “low platelets” not not “low enough”, they do several blood tests every month, it goes up and down until they’re happy then I get on with things.
I do have endometriosis and gastro symptoms (I had endo removed from my bowel and it got worse so we are currently unsure if it’s endo, adhesions or an undiagnosed gastro issue) so I feel pain and fatigue every day.
But sometimes these things get worse which is how I end up back at the gp office having a blood test (and the above cycle repeats) I always pass blood (for years, but had serious bowel conditions ruled out), I always have long heavy periods (typical endo symptom).
Most recently I have had dark red spots on my inner elbows, they also looked bruised. I had extreme fatigue to the point I thought I was just going to drop and my legs buckle, really bad brain fog etc. This was during a two week period and I had heavy gym bleeding, several mouth ulcers and when I cut my leg shaving it took all day and a whole tea towel to soak up the blood.
I’m fairly certain these are all platelet symptoms and guess what? The gp wants to retest next month!
Unfortunately I don’t know the actual count but I’m fed up of this and just want some support. Surely consistent “low but not low enough” is not normal?
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Ash24601
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Hi Ash24601 you’re in the RIGHT place, this community is here to support and learn from each other. Have you been diagnosed with idiopathic thrombocytopenia by a hematologist? When my platelets drop below 20 thousand, I have increased bruising (which is bleeding), fatigue, irritability and depression. You are now complaining of prolonged bleeding with cuts and menstruation, YES your platelets are low as you are using platelets to stop the bleeding. What is your so called doctor waiting for, uncontrolled hemorrhage? You need to see a hematologist for diagnosis and treatment so you don’t end up in a hospital for 10 days receiving blood transfusions like Shielz ( ITP members)?
This site has an excellent educational center, please learn as much as you can about our disease and seek medical care from competent doctor. Be well Georgia
Thank you so much for the support! My gp did say “maybe low is just your normal” which I’m not sure about lol. I will ring tomorrow to schedule another test and make sure I ask about the number.
Hi Ash24601, Norma platelet count is 150,000 to 450,000 thousand how can your doctor say that your low counts are “your normal”? I’m aware that ITP treatment varies from country to country but lab values are standardized for example, 1kg = 2.2 lbs in the US. My counts range from 30-80 thousand with weekly Nplate injections; there is NO cure at this time, the goal for me is to maintain my counts at 50 thousand which allows me to live a fairly active lifestyle without bleeding out. Please check out the educational site to learn about our disease and make an appointment with a hematologist. Be well Georgia
Thank you! I am from the U.K. so if my gp won’t refer me I guess that’s that but fortunately I have recently started a new job with health insurance so I’ll ask them about it too.
Is there any lifestyle changes you can do to keep platelets up? Are contact sports a definite no no?
I'd be careful with contact sports. Get your GP to refer you to a Haematologist, as the GP evidently doesn't know much about ITP...not all of them do.
Might be worth keeping a line graph of what your platelet count is. Mine is normally 38, with the odd spike to 60 if I'm getting a cold. You could plot a straight line at 150 for the lowest it should be, then yours underneath to show the GP the difference between the lowest recommended platelet count, and what yours actually is. Sometimes doing that can work, as they can't then dismiss it.
Otherwise, if you can't be referred on the NHS, ask for a private referral, and once you've been seen, the consultant will get you on the NHS list anyway.
My ‘normal’ is between 15 and 30 platelets per unit of blood. After trying to treat me in a variety of ways, and not improving the situation I told them to stop and they agreed!
As long as my blood is in my veins & arteries I’m fine, tired but fine.
I wear a medic alert bracelet so if I’m ever in an accident the information is there to say I am likely to bleed out & need to be treated urgently.
BUT otherwise, I’m OKAY!
Contact sports are not a good idea. My kids go down water slides first without me and come back to give me a ‘bump’ evaluation! If I bump my head during the day I txt my husband, he doesn’t need to reply, it’s just there incase he comes home and finds I’m more ‘dipy’ than normal, or seem odd, then he knows I had a bump and he needs to ship me off to hospital.
I’ve been living with exceptionally low platelets for about 20yrs and had no admissions to hospital for more than a day.
(Except for the birth of my son, ‘C’ section, still out in five days!)
Thank you all for the support, I rang my gp today but the receptionist was unable to give me the number, just that I need to be re tested as they’re low.
Unfortunately martial arts are a passion of mine but I’ve been so unwell lately that’s I’ve considered giving up and this is just another spanner in the works. I’ve just cancelled on a competition in two weeks after realising it’ll also be the first day of my cycle.
Hi Ash24601, from your description of symptoms you are definately in the 'right' place. Your GP s not the person you need to be seen by! Don't wait 'phone the practice and talk to GP, ask for a referral to your local hospital consultant haematologist, if that is not forthcoming in short order, then, when you are showing unexplained bruises, blood spots under the skin - petichiai or bleeding that does not stop after 15-20 minutes, turn up at your local A & E , they will do bloods, if you present a low platelet count referral to haemo will be (or should be) instantaneous and you will be seen and assessed for treatment there and then. Do not wait for your GP to 'guess' at whether your count is not 'low enough' or 'maybe low is your normal'!
Most of us ITPers cope well with platelet counts of 40-50, but at that level there are risks in undertaking any contact sport particularly where there may be contact to the head. I had to give up Karate when I was diagnosed at the beginning of 2017.
I hope you get a proper diagnosis in the near future. Please keep us all up dated on your progress.
No replacement, but keep up the exercises, kata etc. Main activity is walking, like to do minimum of 4-6 miles a day (have done 10+) over mixed terrain; helps keep me sane and fend of the fatigue that is part of ITP, would be so easy to slip into inertia and lethagy.
That’s why I love being active despite being incredibly fatigued! I have decided to take a few weeks off while I wait on tests and see what happens. I have already planned other activities (yoga, swimming, volunteered for dog walking) hopefully to spark a new passion.
Hi Ash, for me here in Denver, CO if platelets go below 30,000 you need hospitalization treatment (IV) and at 60,000 ( 2 1/2 days in hospital) they sent me home with 2 days of pills (steroid). Since then I've steadily gone up and have stayed in the normal range (between 262-302,000) which is very good. My platelets were a 4,000 - with bruising and pectekia (sp) little red dots all over but I felt fine so it must be different for everyone. It's only been 3 months but they did alot of testing to diagnose me plus a bone marrow. This is a good site for support and information. A hematologist needs to be consulted for you to get answers as Kyriak51 mentioned! Good luck.
I found out today that my platelet count last months was 119. I was due for another test today but they couldn’t get bloods. It was also a nursing assistant trying so she couldn’t really answer my questions.
I'd love a count of 119, but it is under the 150. I was diagnosed with a count of 80 in 1995, and it has slipped over the intervening 23 years to about 38. It can go as low as 19.
Get th st referral if you can, and go and see someone who deals with this on a daily basis. A GP just won't know.
It might be a different auto immune disease, 119 seems high to be giving you all these symptoms on its own. It might be something else entirely.
Think you need to see your GP again and have a good chat about how you are and what the GP thinks might be causing your symptoms.
Think it’s time to broaden the discussion what else might be causing you to have low platelets, but not very low, AND bleeding constantly from your bowel(?) Where else might you bleeding that they don’t even know about? etc.
Be determined to sit and discuss, don’t let the GP wrap up the appointment without a clear plan you are happy with.
So sorry you're having such trouble. This is a weird disease. It's hard to know much about it. I am suffering hearing loss (and more recently eye difficulty) and was told by the ENT doc that ITP can cause hearing loss.
I've heard one should treat the symptoms and not the numbers. There are stories out there of people who have had full lives in spite of the condition. Let's hope for that.
Hang in there. You are in my thoughts and best wishes.
The Brits have a support organization called "The ITP Support Association". I found it online (I'm in Canada) and joined. They have a journal with lots of good information. It made me think that ITP is better understood and handled in the UK but your situation doesn't bear that out. It would probably be a good idea to join. The contacts would be useful.
Im not sure if 119 is enough to get diagnosed, all hematologists consider itp patients to be in complete remission when their count is over 100.. and I think that the new definition of "real thrombocytopenia" is anything under 100. With a count of 119 you can even have brain surgery so I wouldnt be concerned
My count is currently 161 but it has been as low as 29. However my haematologist is certainly not suggesting I am in complete remission. I am still on medication for ITP, but if I stop taking the tablets I am sure my count would plummet.
If your count is above 100 for more than 2 months without medication it's called a complete remission (dont believe me on the number of months, might've been 3 or 4, i read it a long time ago), your counts dropping again would be called a relapse. So if someone has never even gone under 100, I wouldn't consider it ITP since for us a constant count of over 100 without meds (like op) would be called a complete remission. But if you're taking a medication for your itp, a count of 100+ would be called a Complete Response, only when you can maintain the count without meds for a certain amount of time would you be considered to be in remission.
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