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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ktp | @ktp | Mar 13 5:47am

Thanks for sharing!
My daughter (33 yo) was diagnosed with thrombocytopenia in 2022 with first pregnancy. In 2026, she is pregnant again and thrombocytopenia has returned along with kidney issues. She has had hearing loss for years.

catherine1290 | @catherine1290 | Mar 13 6:36am

In reply to @ktp "Thanks for sharing! My daughter (33 yo) was diagnosed with thrombocytopenia in 2022 with first pregnancy...." + (show)

@ktp I wish your daughter well. Does it improve after she delivers?

ktp | @ktp | Mar 13 6:41am

Yes, the thrombo does improve. The hearing loss has been noticeable and consistent for about 6-8 years. I found the prior comment so relevant since she has now been hospitalized twice during this pregnancy with kidney issues; yet to be fully diagnosed due to limited screening because of pregnancy. Thanks!

Colleen Young, Connect Director | @colleenyoung | Mar 23 8:02pm

@catherine1290, AI tools like Copilot can be really helpful to find answers. Keep in mind, they can be wrong. I'm glad you took this information to your hematologist to verify if it applies to you. What did you find out at your appointment?

catherine1290 | @catherine1290 | Mar 23 9:04pm

In reply to @colleenyoung "@catherine1290, AI tools like Copilot can be really helpful to find answers. Keep in mind, they..." + (show)

@colleenyoung
I was not taken seriously and was informed they are not set up for genetic testing. She also said she didn't order the Blood Smear For Morphology and that it must have been done by mistake in the lab. It was on the labs orders I hand carried from her office. I guess I've hit a brick wall!!

Colleen Young, Connect Director | @colleenyoung | Mar 25 2:55pm

In reply to @catherine1290 "@colleenyoung I was not taken seriously and was informed they are not set up for genetic..." + (show)

@catherine1290, how frustrating. Have you considered getting a second opinion?

catherine1290 | @catherine1290 | Mar 25 6:04pm

In reply to @colleenyoung "@catherine1290, how frustrating. Have you considered getting a second opinion?" + (show)

@colleenyoung
No I haven't considered that. All the major reasons for my low platelets have been ruled out. Even if I were right in the MYH9 there is no tx. I am now at 59,000 and watching them drop every 6 months. Someone wrote in this forum that she raised her count by taking unsulphered black strap molasses. I bought a bottle and asked her how much she takes and how often. She didn't answer me.

vng | @vng | Mar 26 2:14pm

For low platelets , we are trying to add a drink of almond milk .
We just started this .
Hope it is correct and helpful .

chenn | @chenn | Mar 27 8:50pm

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.

chenn | @chenn | Mar 27 8:52pm

In reply to @vng "For low platelets , we are trying to add a drink of almond milk . We..." + (show)

@vng I started drinking this as well. Hope it does help.

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