I am writing this because I have been reading everyone's posts that have thrombocytosis, or high platelets. It looks like I am the winner if we were competing with how many platlets we have. I was diagnosed in 1974 with a platlet count between 8 and 10 million, I was 5. Yes, million, I'm not crazy!! In fact, back then, blood cells were counted by hand (or however you want to say it but there was not a machine to count blood cells, at least not one that went that high.) I will never forget that day, at Children's Hospital in Denver. FREAK OUT!!!!!!!! I swear if they had one, alarms would have screamed and every Dr in the hematology/ Oncology department would have come running!!!! Platlets in the millions? Totally unheard of, even today. So, if you have been diagnosed with this disorder, let me share my life story. I wish I could have talked to someone but there wasn't any known cases at that time. I was always told by the children's hospital that I was "special". Special my **s, I was a freak of nature, still am. I still win for highest platlets, now, at 46, they run between 2 and 4 million. I wish I could tell ya'all it's going to be ok but I can't. I now have chronic leukemia and I live in pain every day. I have every symptom you all have said you have. It doesn't seem to matter if your platlets are 400,000 or 10 million.
I was studied by all the big medical research universities in the world. I still don't understand much about this because the medical profession doesn't understand much. There just aren't enough people with this condition for them to spend money on research. Let me say this, I may sound bitter, angry, frustrated,........that is because I am. I have found Doctors to be arrogant and think they know everything and when they don't, they won't admit it. When I was in my late 20's, my husband and I tried to have a baby. 5 miscarriages. If you have thrombocytosis you probably know this but platlets, white blood cells and red blood cells develop and grow from stem cels in the bone marrow, bones are hallow so this can happen. ( let me say again, I do not really understand how this all works so if I say something that is medically incorrect, I'm sorry. I am just telling you what I understand and it may not be exactly correct but it's what I have been told or read and there really isn't much info out there. Plus, the Doctors don't know either so they can't really explain it to me.) When you have soooo many platlets, there is no room for any of the blood cells to mature, so what you get is white blood cells ( they are a big part of your immune system) that are unable to mature and work right which is why we all end up with things like MS, Rheumatoid arthritis, any autoimmune disease and get sick a lot. Same with red blood cells, they carry oxygen to your brain and body. They too can't mature so you end up with chronic anemia, not enough oxygen. Then the platlets, they are immature as well, this is why we are bleeders. With 10 million platlets, my blood doesn't clot if I have a major bleed. I get blood transfusions at least once a year, either because my red cels can't get enough oxygen to my body or because i have some type of internal bleed, usually GI. So, those of you with this, watch your stools ( sorry, but if you taste blood and don't know why or if your stools are black and tarry, ER FAST!!!!!) I have to go for now but I will finish my story later today. I do have 2 healthy boys now 13 and 15. I will explain how I was able to carry them when I get back.