Answer for thrombocytopenia?

Posted by catherine1290 @catherine1290, Mar 12 5:30am

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 Thank you for the update! I'm in the same boat with you getting no definitive answers. I am 77 and sometimes I think they aren't as aggressive with looking for answers. I am still taking the Papaya Leaf Extract to see if it helps. Do you think the tuna helped raise your numbers?

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@catherine1290 I have no idea, but I am just trying anything at this point. I agree, I think the age factor is part of it, not that I want meds for it with possible side effects, I just want to know what's causing it. Frustrating. Please update me on the papaya and if you see a change. Seems like just eating certain fruits help with it also.

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Profile picture for chenn @chenn

@catherine1290 I have no idea, but I am just trying anything at this point. I agree, I think the age factor is part of it, not that I want meds for it with possible side effects, I just want to know what's causing it. Frustrating. Please update me on the papaya and if you see a change. Seems like just eating certain fruits help with it also.

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@chenn Yes it sure is frustrating not getting any answers after 4 years. I won't know if the Papaya Leaf Extract helped for another 5 months. I will let you know.

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Profile picture for catherine1290 @catherine1290

@chenn Yes it sure is frustrating not getting any answers after 4 years. I won't know if the Papaya Leaf Extract helped for another 5 months. I will let you know.

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@catherine1290 4 years is crazy. I am only starting the journey
Hugs!

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Profile picture for chenn @chenn

I have low platelets, Now down to 70k, from 198k in Dec and large platelets. No other symptoms and rest of blood is good. Ultra sound on liver, kidney and spleen showed nothing. Scheduled for bone marrow biopsy this coming Tues. as well as taking a bone chip.

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@chenn
My husband , who is is 91, just had a bone marrow biopsy. His platelets got to 50. Did you get your results back? How long did it take? Thank you for sharing. This is all new to us.

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@chenn
My husband , who is is 91, just had a bone marrow biopsy. His platelets got to 50. Did you get your results back? How long did it take? Thank you for sharing. This is all new to us.

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@gram13 I went to my chart online with the hospital and could access the blood work shortly after. The actual bone marrow biopsy was available to read a few days later. All of that came back fine, so the radiologist order and additional chromosome and genetic testing to rule out other possible things. That came back 4 or 5 days later, but was hard to understand so waited to see Dr. It was a total of 10 days from biopsy to seeing dr. Please let me know the outcome of his biopsy. It is new to me also - it was just discovered in a routine blood draw in Dec. A little scary and frustrating to not know what is causing it.

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Profile picture for chenn @chenn

@gram13 I went to my chart online with the hospital and could access the blood work shortly after. The actual bone marrow biopsy was available to read a few days later. All of that came back fine, so the radiologist order and additional chromosome and genetic testing to rule out other possible things. That came back 4 or 5 days later, but was hard to understand so waited to see Dr. It was a total of 10 days from biopsy to seeing dr. Please let me know the outcome of his biopsy. It is new to me also - it was just discovered in a routine blood draw in Dec. A little scary and frustrating to not know what is causing it.

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@chenn
We have an appointment on April 29th. Still nothing on the Portal. I am going to call today. I will keep you posted. Keep me in time lool about your outcome.

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@chenn
We have an appointment on April 29th. Still nothing on the Portal. I am going to call today. I will keep you posted. Keep me in time lool about your outcome.

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@gram13 Yes, Please keep updating us!

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Profile picture for chenn @chenn

I have low platelets, Now down to 70k, from 198k in Dec and large platelets. No other symptoms and rest of blood is good. Ultra sound on liver, kidney and spleen showed nothing. Scheduled for bone marrow biopsy this coming Tues. as well as taking a bone chip.

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@chenn 2022 test revealed my platelet count at 18,000.
Given a high dose of steroids, followed with chemo, I went to 330, today 4/18/2026, I am maintaining 165 - 176. I had the same exams you’ve listed, and the best care has been tremendous.

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Profile picture for seawiz33 @seawiz33

@chenn 2022 test revealed my platelet count at 18,000.
Given a high dose of steroids, followed with chemo, I went to 330, today 4/18/2026, I am maintaining 165 - 176. I had the same exams you’ve listed, and the best care has been tremendous.

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@seawiz33 WOW! That is amazing they went up so high!! My hematologist will not put me on steroids due to my age (71). So hopefully I don't go below 50 or she may put me on an agonist receptor medication which I have not looked into yet. How long did you have to do chemo - any side effects from that? Sounds scary....hope you continue to do well and please keep me posted!

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