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Thrombocytopenia (Low Platelet Count) In the Blood)

Question:

Please describe your experience with thrombocytopenia. Submit Your Comment

Comment from: Bbb, 19-24 Female (Patient) Published: February 04

My platelet levels are 60 today and I’m also anemic. I was tested for Von Willebrand disease which came back negative. My levels are getting lower and lower and there’s no particular reason why. I don’t know when my doctor will do something for my thrombocytopenia because I’m tired and dropping weight fast. My level is low but it’s not too low I guess. I’m scared I’ll be on medicines for the rest of my life.

Comment from: Jimbo, 45-54 Male (Patient) Published: October 08

I have had thrombocytopenia from birth so if you have anywhere from 150000 platelets to 350000, I have 13000.When I'm sick they go up and when I'm well they go down, so don't stress too much.

Comment from: Lisa, 45-54 Female (Caregiver) Published: August 12

I was diagnosed with ITP (immune thrombocytopenic purpura) 3 weeks back, with my blood count being at 4, I was in hospital for a week on steroids and it dropped to 2. After a further week of being on a different drug I was released from the hospital with a count of 28. A week later it is now 36 but I feel so fatigued all the time. I suffer with headaches as well. I'm really worried thrombocytopenia is going to affect me long term.

Comment from: Param, 45-54 Male (Patient) Published: September 13

I have had low platelet count for the last few years from the month of April to September and then it gets normal. This year May 18 my platelet count was at a low of 98 then 90, and in the third checkup 52 thousand. After papaya leave juice and 2 IV bottles my platelet returned to 134000, but after one week again found 90 thousand and 65000 4 days later. Ultrasound reports my all organs are normal so no idea what causes my thrombocytopenia. I’ll see the next report and update.

Comment from: Brody2016, 65-74 Female (Patient) Published: November 07

I have lymphoma and it is in remission. But now my platelets are low, 70,000, and for the last few months I have had thrombocytopenia. The weird thing is it is just on the top of my arms below the elbows. No place else. If I touch anything in that area it brings it up because my skin is so thin! My doctor has been watching my platelets and they haven’t gone any lower than 70K so he’s holding off testing my bone marrow unless it goes below 70K.

Comment from: Girly, 55-64 Female (Patient) Published: August 16

Thrombocytopenia is life limiting. When I went to the 3rd hematologist, he never drew my blood, and my platelets are at 48 after another doctor. Wonder if I should go to the emergency room.

Comment from: Margo, 55-64 Female (Patient) Published: August 15

Wonder if anyone has ever thought about exosomes for thrombocytopenia. I have dealt with low platelets for the past 2 years. I am thinking about trying this real soon. I have to come up with USD 2500 out of pocket.

Comment from: Owen, 55-64 Male (Patient) Published: August 01

I am new to thrombocytopenia. Two months ago I had a slightly low white blood count. A follow-up test showed it had risen into the low-normal level. But on that test my platelet count was about 350,000. Slightly low. I have been telling my doctors since 2011 that I am tired all the time. Unless I am at the gym, mowing the lawn, etc., I am tired. I sit down to read, watch a ball game, etc., and I fall asleep. Maybe the low platelets.

Comment from: sugarbaby, 55-64 Female (Patient) Published: July 03

I went to new primary care physician (PCP) for checkup; had my vaccines; bloodwork and other necessary tests. Note, at initial visit I had a platelet count of 114; thereafter I was told I had idiopathic thrombocytopenic purpura (ITP). The PCP sent me to a hematologist and he asked me what she sent me there for (platelets were at 45 then), and then sent me to a rheumatoid arthritis specialist. She put me on Plaquenil, checked my fingers and toes and discharged from her care. I was under lots of stress during this time, most of 2011, and came down with sepsis. I was admitted to hospital with 2K platelet, received 5 IVIGs, and discharged to home, in 2013. All was good I thought till I went back for follow up with PCP and got more vaccine shots. I had Pap smear and it felt like she scraped the cervix. I saw small amount of blood in urine and told the PCP. I went to the nearest emergency room and informed them and they took sample of urine (no infection; etc.) and sent me home. I called the hematologist as the PCP suggested and went in and the roller coaster ride began with platelet at 13K now. I was given no options but told I would get an injection. I thought fine; only it was every week, and then I asked about Promacta and got that. Platelets are fluctuating in safe range mostly 30K to 80K. The hematologist tells me it is lifelong and no chance of remission, where I did read otherwise. I am feeling frustrated and confused why they waited 3 years to treat something that they initially did not need to treat and now putting me through the ringer with unanswered questions.

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Comment from: Paniapania, 45-54 Male (Patient) Published: October 11

I've had idiopathic thrombocytopenia for quite a long time now. A condition in which my platelets are attacked by my own immune system. Idiopathic means they don't know the cause. I've had my spleen removed, and then put on prednisone, to no avail. I’ve had Rituxan, then for the final treatment I'm currently on Nplate. It causes rash on my body and severe back and joint pain. I've no choice but to continue this treatment or I will bleed. Good luck to me and all others with this condition.

Comment from: GODS CHILD, 35-44 Female (Patient) Published: June 16

I was undergoing severe continuous headache from 2001 and was diagnosed with idiopathic intracranial hypertension and edema in the eye till 2011. From 2012 onwards I developed idiopathic thrombocytopenic purpura (ITP), and platelets drop every 6 months. From 2015 December, after IVIG, all reports are normal, and at present platelets are 40,000. After having papaya leaf juice daily it increased to 90,000 right now. Every time I was treated with steroids, I had heavy bleeding in every month’s cycle. Presently due to suppression of immune system it has led to tuberculosis (TB) in the neck found after biopsy. At present I am not able to take treatment for TB because I may undergo blood and platelets loss again while treating. For more than 15 years I have been in search of doctors, tests and investigation, and looking for suggestion to improve my health and to lead peaceful life without any fear.

Comment from: DataSeeker, 55-64 Female (Patient) Published: March 25

Through a routine CBC my primary care physician discovered my platelets were 54 and sent me to a hematologist to find out why. Nine months later there is still no explanation for my thrombocytopenia. All other lab numbers are good and none of my 4 medications seems to be affecting it. I have had a spleen ultrasound, a liver/spleen scan, referred to a liver specialist and sent for a second opinion with another hematologist at a medical school. Platelets dropped to 44 so a 2 week trial of steroids was started just to see if that would raise them but so far they have just gone back to 59. The time, money, worry and frustration sets in because you don't know if there is something there lurking undercover or not. The next step is just to have hospital records marked that any scheduled surgeries will require a platelet transfusion. In case of an accident or being at a different hospital I just hope I will be conscious and aware enough to tell medical workers I have a low platelet count.

Comment from: MAMF, 45-54 Female (Patient) Published: November 10

I was diagnosed with ITP at age 27 (I am 45 now). I too was shocked because it appeared out of nowhere. All of a sudden my legs were covered with small red dots and I had no energy. By the time I went to the doctor and had a blood test, my platelets were at 9,000. I was admitted to the hospital that night. Luckily, all the other tests that were taken (including a bone marrow biopsy) were clean. I responded well to the prednisone but it took 5 years of taking this medication on and off before getting back to normal. I have not had any recurrences since. I hope the others on this post have the same results - don't get discouraged.

Comment from: Sick & Tired, 55-64 Male (Caregiver) Published: October 03

My husband, 56 years old, had Hodgkin’s lymphoma in 1996. He had chemotherapy, radiation and recovered. Now he has NASH, nonalcoholic cirrhosis of liver. He has always been a strong, hardworking man, couldn’t sit still always doing something, now so weak he can hardly get around, dizzy, can’t remember things, exhausted, and nauseous. The doctor sent him for lots of blood work which showed platelet count 44 and ammonia level 72 down from 85. He was on lactulose, now changed to another drug. He was sent to the hematologist years ago for low platelet, nothing was wrong. I am worried if this is thrombocytopenia.

Comment from: Anton, 35-44 Male (Patient) Published: September 25

My platelet count has been 133, 140 and back to 135 all in 1 year. I am worried about my thrombocytopenia and my doctor keeps telling me to come back in 4 months.

Comment from: Janette, 45-54 Female (Patient) Published: June 27

I'm so very scared. I've been diagnosed with rheumatoid arthritis and breast cancer. I have had numerous spinal surgeries and am feeling so very weak and tired. I have thrombocytopenia and my platelets count is at 143.8. I also am getting ready for a couple of surgeries.

Comment from: 19-24 Female (Patient) Published: October 06

I am 20 years old. I was diagnosed with severe thrombocytopenia, and we are still trying to figure out the underlying cause. Basically, one day I just woke up one day feeling like I was hit by a truck. Two weeks later I am going in and out of the doctor’s office complaining of severe pain, and he cannot figure out why so he sends me to the E.R. only to find out that I have a platelet count of less than 7,000 and my body is spontaneously bleeding just about everywhere, and in my brain. Another four hours (their guess) and I would have been dead. They did a transfusion, and kept me in reverse isolation for three days then sent me home. I have been on steroids ever since. They have still not figured out why that happened, only that every time they take me off a steroid pill, my platelet count drops by 100,000. And now, I 'm on my last pill. They are taking me off of it this week to "see how I do". Wish me luck...

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Comment from: Hopeful, 35-44 Female Published: September 10

I asked my doctor if I could have a blood test to check my vitamin levels. I was feeling tired, loved to eat ice. The results appeared to show that I had a severe case of anemia. I started taking Iron Supplement. Followed by another blood test all areas related to anemia appeared to look normal but my platelet counts went down to 14. Following another blood test 4 days later platelet count went down to 10. I wasn't experiencing any bleeding except for a strange (something) looks like plantar warts on one of my foot. I was advised to go into ER. ER doctor suggested optional platelet transfusion. A Hematologist speculated ITP or TTP. So I've started taking prednisone. I've been feeling perfectly fine. I'm just concern with 5 weeks of taking prednisone the side effects that I my experience.

Comment from: Rachel, 65-74 Female (Patient) Published: September 10

I feel like a guinea pig. I have blood draws regularly, but limited treatment. One hospitalization with high dosages of prednisone, then immune globulin, and suggested experimental drug with harmful side effects. Over a three year period my platelets hovered in the 70-90 range. Now they are 36 and I am on a short-term dexamethasone treatment with a possible consideration of another highly experimental therapy. My liver is starting to show some elevations, I recently had a lot of X rays and I think the x-rays may have lowered my platelets. Not enough research in this area. More needs to be done. Causal factors need to be found and treatments that are safe need to be found. Cortizone is not the answer either.

Comment from: theresa, 35-44 Female (Patient) Published: February 13

My platelet count is now down to 87, I wonder if that means thrombocytopenia. I am on chemotherapy.

Comment from: Gailygirl, 65-74 Female (Patient) Published: October 23

My platelet count is 82,000. I am concerned that this may be dangerously low.

Comment from: TTP survivor, Female (Patient) Published: January 10

I have TTP now. I was diagnosed when I was 27 years old and now I am 38 years old. I went to three different hospitals and my symptoms were: vomiting, big red bruises all over my body, seizures, bleeding from gums and ears, confusion, and in and out of consciousness. I was saved when I went to a teaching hospital and most of them never even seen anyone who had all these symptoms and still alive. I had a really low platelet count and even now, until they find a cure, I have to have plasma exchanges often, bone marrow testing, and transfusions, for the rest of my life.

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