Low Platelets..Help PLS!!! only 22 years old

Please read I'm desperate and in need of help....In serious need of someones opinion who had ITP I recently have been suffering from low platelets but my platelet count didn't just drop it came down slowly...First I went to the emergency room feeling ill to my stomach and particularly gassed after a short intense workout..They ran some blood tests and said I had abnormally high white count creatinine levels and a platelet count of 112...The ER doctor suggested I see a renal specialist and a hematologist, I saw my family PCP for a follow up and my level were even lower now at 105...My doctor told me that 105 is perfectly normal for some ppl.. Anyways fast forward 3 months of feeling like shit everyday I finally get sick of feeling fatigued and ill and breaking out in this strange rash I go the emergency room again this time with a platelet count 15,000 platelets which is dangerously low....My question goes out to everyone who ever suffered from ITP how long did it take your platelet count to get dangerously low...Im also worried I'm being poisoned..

side note after they put me on prednisone my platelets went up by literally 50,000 each day till they reached 387k now there declining with the prednisone tapper at 30mg a day there at 220 ill post more info when i get back from the doctors today just looking for some answers..Also I am p****** blood and have a lot of kidney pain the doctors at one hospital diagnosed me with a blood and protein in my urine but then i gave a second test at my PCP's office and they said they couldn't find anything wrong with my urine

Also I have not been sick or ill before this whole platelet ordeal not even had a tempeture this year what so ever and workout at least 3 times a week and I am very fit

Hi J..my platelets are below 10,000 for at least 2 weeks of every month, and then for the other two weeks are better/higher...weird I know..you get used to it, my knowing now when my platelets are below 10,000, which is dangerously low is I always get that rash, my legs are covered in dots and I wud bruise from the smallest thing, plus wud be v tired. It does initially seem v frightening, but u get to know your body. I wud say I am v fit too, and unfortunately it doesn't influence it. i still try keep fit, but when my platelets are below 10,000, I take it v easy. A tip for you is, over my 7 years of high and low platelets, stress is not a help at all, I notice everytime I am stressed (unknown to myself) my platelet count is extremely low. My platelets can be 2/3,000 sometimes, it just can be so unpredictable. I only joined this website last wk, loving it, I printed out the leaflet on how to cope with ITP, I would advise take a read of it, it is v good , hope that helps a bit

yeah its helps a little..just so many questions and i feel like all my doctors leave me in the dark and i deff agree with the stress factor but not too much happening there with being premed and having a full time schedule..Have you ever heard of N-plate to suppress you immune system just so your platelets don't get too low?? i mean 10,000 if someone looked at you wrong you could die (Joking but really bud thats really low)?

It sounds like your issues are more complex than just ITP, ITP is generally characterized by ONLY the platelet count being abnormally low and other blood elements being normal. Kidney pain is not a symptom of ITP for example. If your counts are over 100 you would not usually have any problems at all that would be solely ITP.

Are you worried someone is poisoning you? How might you be poisoned?
Erica

n-late doesn't suppress your immune system, it kicks up the production of platelets. Some other ITP treatments do suppress the immune system.

Many of us have survived platelet counts below 10,000. Mine were 8,000 for a while and I went to work every day and drove and so forth.

Try to read as much on the PDSA website as you can.
Erica

If you have a kidney infection which sounds likely with the high white count and creatinine and blood in the urine, it may be that the infection triggered ITP, as any infection can. Did they send urine off for a culture test to see if there's an infection?

If your platelete count is 112 then you may have to consider hospitalization for a short while.I would strongly urge you do not partake in any strenuous activites until such time as the haematologist gives you the all clear. You need to be patient and not freak out as it does nothing. You are not dying you are sick and your condition will vary.First thing first, get yourself thoroughly checked out and make sure that there is nothing else causing the problem. You will get over it; just be patient.

J, if you're hospitalized with a count of 112, then you need to get a new doctor! I've been as low as 3 and never been put in the hospital. When I was treating, I didn't have any treatment unless I was under 20, even under 10 at one point.

It sounds to me, and I'm not a doctor, that maybe you have a kidney infection or maybe even stones. You really should get an ultra sound done. Just my opinion.

What makes you think you're being poisoned?

Jackson, a platelet count of 112 is 112,000. I would do crash test dummy work at that count if nothing else was wrong with me (well I'd be nuts but that's not my point!)
Erica

Jwest:

Sounds like you might have more than ITP going on. I know there are several reasons for having protein in the urine, some simple and some not. Having a high creatinine level too could indicate a problem with kidneys, hence the nephrologist. That doesn't have anything to do with ITP directly.

Erica is right...N-Plate does not suppress the immune system. It's a TPO - helps the bone marrow to produce platelets.

While 19,000 is a low count, it's survivable. A lot of us have worked and done normal things with counts under 10,000. I have chosen to not treat until I hit 10,000. The good news is that you respond to Prednisone and that pretty much takes the danger away. You can get counts up - nothing to fear! Counts tend to drop with the taper, but sometimes people get lucky and they level out to a safe number for a while. If not, they treat again, either with Prednisone or another treatment.

Blood in urine can also be due to a bladder infection. Strenous exercise can also cause blood in urine, which usually clears up in a few days. How long/often does this happen? Causes of blood in urine; Urinary tract infection, Kidney infection, Bladder or Kidney stone, Enlarged Prostate, Kidney disease, Kidney injury, Medication, Strenuous excersise. Have you ever been tested for Diabetes? Elevated Creatinin levels can be due to Diabetes. May want to consider an Ultrasound of Kidneys and Bladder if blood in urine continues.
As far as ITP, it seems as though you respond to Prednisone like alot of us do. As long as you are on it, your counts respond but drop as you taper. I do not see that you need to be Hospitalized as suggested. Most are never Hospitalized. It seems to depend on the Dr. I have never been Hospitalized even at 2k. Why do you feel you are being poisoned? You need to control any stress you may be experiencing. Prolonged periods of stress is hard on the immune system, which Platelets are a part of. You may have to consider and research other treatments for ITP. Prednisone is not a long term treatment nor is it good to be on it for long term. Platelets also carry Serotonin a mood regulator in our bodies. Do you feel like you are not quite like your normal self, Mental Health wise? Alot of us feel Fatigued with ITP.
One of the best things you can do yourself right now, is not to stress out. Take some time during the day and do some realxing breathing. Close your eyes, breathe in through your nose, exhale through your mouth. This will help you relax if you are stressing out over this. Research on ITP, here and on the web. Also, keep an eye on the urine issue. Are you taking any supplements related to working out?

I deff think there is something else going on..all i do is sleep all the time and I lose energy fast..Has anyone here ever done the prednisone tapper? what were your results?? just curious because at first my number shot up really well by 50,000 a day but now that I'm down to 20 mg a day there falling by 60,000(or 20000 a day) every 3 days is this normal?

any chance any of you would know if a parasitic infection could be causing this just last year and this summer I traveled out of the country 2 times to mexico and the bahamas (multiple islands)

no not taking any supplement anymore but i was on a grocery list of supplement from GNC since I was an employee there I've been clean (pun intended) lol for about 3 months of that stuff

thought my roommate might have been seriously I'm not like crazy he just from japan and he's an asshole and has little man syndrome around me..but i don't think so anymore I'm thinking i maybe just caught a transient virus from him i mean the whole him being from japan and tech all virus are diff from diff parts of the world I'm thinking my immune system was just caught off guard by a virus from over there?

I know I'm going to mess this one up but anyone try this immunglobbin and how did it work?? getting tired of prednisone..

Blood in urine can also be due to a bladder infection. Strenous exercise can also cause blood in urine, which usually clears up in a few days. How long/often does this happen? Causes of blood in urine; Urinary tract infection, Kidney infection, Bladder or Kidney stone, Enlarged Prostate, Kidney disease, Kidney injury, Medication, Strenuous excersise. Have you ever been tested for Diabetes? Elevated Creatinin levels can be due to Diabetes. May want to consider an Ultrasound of Kidneys and Bladder if blood in urine continues.
As far as ITP, it seems as though you respond to Prednisone like alot of us do. As long as you are on it, your counts respond but drop as you taper. I do not see that you need to be Hospitalized as suggested. Most are never Hospitalized. It seems to depend on the Dr. I have never been Hospitalized even at 2k. Why do you feel you are being poisoned? You need to control any stress you may be experiencing. Prolonged periods of stress is hard on the immune system, which Platelets are a part of. You may have to consider and research other treatments for ITP. Prednisone is not a long term treatment nor is it good to be on it for long term. Platelets also carry Serotonin a mood regulator in our bodies. Do you feel like you are not quite like your normal self, Mental Health wise? Alot of us feel Fatigued with ITP.
One of the best things you can do yourself right now, is not to stress out. Take some time during the day and do some realxing breathing. Close your eyes, breathe in through your nose, exhale through your mouth. This will help you relax if you are stressing out over this. Research on ITP, here and on the web. Also, keep an eye on the urine issue. Are you taking any supplements related to working out?

Reply
The blood in my urine just started friday of last week and since then there has been trace amounts...even weird though I had a urine test done at the hospital and it had blood in it...then 2 hours later at my PCP's office he had me due a urine specimen and found no blood??? They did an ultra sound and a CT scan of my whole abdomen and found nothing to be enlarged..mental health wise i believe I'm fine just under a lot of stress....my thinking approach to the whole stress suppressing my immune system is would that be good? I mean it is my immune system that is attacking my platelets but yeah i try and relax just too hectic of a class and work schedule to really see any down time..

I think for the moment you should focus all your energy on getting better and not looking for the reason, WHY...did u read the leaflet on coping with ITP, it is v reassuring? I think any worries u have with regard to infections/virus u sud say to ur doc, but I really don't understand why u think ur housemate has gave u a virus, why is he feeling sick too, similar symptoms? Immunglobbin can sometimes be successful early on in ITP, it is no harm to look into it/ask your haematologist for an opinion I have ITP over 7 years and I took it v bad at the start, stressing myself out lots and the one regret I have is that I didnt stress so much because maybe at the time my body/immune system wud have been stronger to fight the ITP/react better to treatments, not telling u what to do, but try minimise ur stress, it will all work out, I always say, there is always someone more worse off than you,read all the success stories also

It's quite likely that you feel rotten because of the steroids you are on. And with all treatments everyone is different. For some, when off the steroids the count will stay up and for others it will fall. It's not good to be on steroids for more than a few months so if they don't get you into remission then you should try something else.

IVIG or immunoglobulin is only ever a temporary treatment. For some it keeps the count up for a few weeks, for others not as long.

What Ann said. Tapering the steroids can cause extreme fatigue. Honestly, the best thing to do is try to keep life normal. Staying in bed will only cause muscle atrophy and weight gain. It's hard to keep going, I know, but you'll be better off in the long run. Keeping life normal is also a good distraction.

Forget about looking for the cause right now. You're putting yourself way in left field. Maybe inhaling dryer lint did it. Seriously, you'll make yourself nuts trying to figure it out and there is no way to prove any of it.

Take one day at a time, try to stop stressing over causes and counts. It is what it is. You'll get through it. It WILL be okay.

I was thinking about you while driving to work today and I wondered if maybe you have acid reflux (GERD). Some of your symptoms are similar to that. I have it, and often have bloating and chest pain. Do you ever feel like it's hard to swallow, your throat is tight or you burp a lot?

If you're looking for a way to keep counts up, IVIG isn't it.

Yeah thats weird I do burp a lot started like 3 month ago also awkwardly after eating..the doc prescribed an ant-acid and Gas-X but those both didn't seem to help?

Yeah I'm trying to not stress so much I just wanna make sure ITP is the only thing I'm dealing with and nothing else

Could be GERD. Maybe you need a different antacid. Which one do you have?

I was actually prescribed Gavascon 1-2 tabs 3 times a day. But that is so expensive, I take the Wal-Mart version.

pepcid ac but the doc has now taken me off of it explaining that it lowers platelet count..

side note: if anyone on here has ever tried that prednisone taper lmk what your results were? and around what number did your platelets level out and prednisone how many mg of prednisone you were on..I know everyone is different I'm just wandering

I was diagnosed with ITP only 24hrs ago, I have the standard leg rash, huge bruises and the mouth haematomas (I think that is what they are called). I am otherwise extremely well. I have a platelet count of 9000.

I have been started on 100mg of prednisone and am going to be having blood tests every 2 days and then weekly afterward. I decided to take colloidal silver internally and also swedish bitters as I believe (Pray LOL) these will help me.

When speaking to a friend she said I should take a calcium supplement and the pharmacist said I should take one with Vit D as this should help to prevent osteoporosis (a side effect from long term use of prednisone).

Through my frantic surfing of the net I also came across a page that suggested massaging castor oil into my spleen area to help with platelet production.

I am also starting a vit c supplement to help with the healthy formation of cells.

I am going to try all of these things together in the hope that I can cure myself (yes I know I will be bombarded by people saying there is no cure) and be able to stop the prednisone sooner rather than later.

I also had no illness or anything, I have not been to the dr in years so for me this is out of the blue....lets hope I am on the right path

KRS:

Whoa girl! I don't think I would start doing all of that without discussing with your doctor. The Calcium Vitamin D and Vitamin C are okay, but the rest can possibly make things worse since you have no idea what you will react to.

Collodial Silver:

health.howstuffworks.com/skin-care/problems/medical/colloidal-silver-blue-skin.htm

Some herbals can cause platelets to be less sticky, which could cause more symptoms if counts are low. Please watch what you read on the Internet and stick to credible sites only. The ones that are selling things are not trust-worthy.

You will only turn blue from the colloidal silver if you drink copious ammounts of it.

I am taking 1 table spoon 3x a day. I have always used it when I would get lesions on my tongue and they would go away. Since my diagnosis when I had the blood blisters in my mouth I have been taking it every day. My mouth is now clear of any blood spots and all of my massive bruises are starting to go away.

I was a bit concerned about the vitamin c as sometimes that can accelerate the properties of other meds you are taking but I am only taking about 2000mg per day. The swedish bitters is to help regulate my hormone levels, I had my first blood test today since getting my diagnosis (48hrs ago) and so will report back with current platelet counts. Thanks for your reply

Okay then. It's your body.

The blood blisters and bruises could be going away because your counts are up from Prednisone. It can work fast if you respond to it especially at that dose, although bruises do take time to fade.

I'd worry the least about the Vitamin C (unless you start to have diarrhea).

my platelet count is 9000 and they just gave me some prednisone and sent me home.

thanks for that sandi.

Great tip about the vit c too