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Answer for thrombocytopenia?
I have been seeing a hematologist for 4 years for low platelets. I still have no answers. Recently I had a Blood Smear for Morphology which showed large platelets. I looked up causes for low platelets and large platelets and came upon MYH9. I have all 3 things that go with it....kidney disease, hearing loss and early onset cataracts. I will ask on Thurs at my next appt. Does anyone have this?
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@chenn That is good news that they went up! I hope the biopsy is good news too! I have started taking Papaya Leaf Extract in capsule form. I have to wait 6 months to see if it helps.
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2 Reactions@chenn Luckily I had an infusion IVIG (?) and on steriod tabs that have bumped me up to 229 after 5 days. I have the option to have a daily pill Promacta (?) and/or monthly infusions IVIG for about 2 years to keep recent flare ups from happening again. I am undecided which route I will take. But, it seems whenever I have an infection, my platelets take a dive, which for this cold season, has been the worse. I have experienced vertigo since my IVIG infusion, which hematologist PA said was probably related to ear infection and advised to treat with rest, liquids, and Meclizine (generic dramamine).
Side note: Dec. with platelets in 40s and March in 20s, I have had a huge craving for red meat. No anemia. Nothing to explain this carving. ALL labs come back as being great.
Have you have food cravings?
@catherine1290
I agree with you about the papaya vs. papaya leaf extract.
I also did some more research regarding papayas--and though many studies are listed on medical databases, the studies seem to center around the dengue fever and not just the platelets.
I happened to find one more resource on Youtube with a doctor (Dr Abby Philips) who explained some of the misleading data with the papaya leaf extract and platelets and dengue. His notes have links. So many studies are for dengue not just platelets.
So, this is what I am finding....After researching and reading some of the medical studies, I've concluded that if my hematologist thinks that I should take a supplement or if she finds that there is a special diet that I should be on, she would guide me in that direction.
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1 Reaction@bluemom30 No, I haven't had any cravings. My dr said she would not put me on steroids due to my age (70). She said it would probably be a Thrombopoietin receptor agonists medication which I have not read up on yet. I guess I will look into it more after all my test results come back. I hope you are able to get your platelets under control and on an upward swing!
@catherine1290 Keep us posted on that! Crossing my fingers for the test results!
@chenn Received results of bone marrow aspiration and biopsy. It says overall, there is no finding that explains the IPT. Chromosome analysis and and MDS gene panel have been ordered. Hoping it doesn't take long for that to happen.
@chenn Great! No blood or bone cancer! I was hoping for a gene panel but they turned me down. Too old I guess! Please let me know when you find out the rest!