Low Platelets: Diagnosis to be confirmed

I have ITB and would like to keep in touch with you. I just joined and am not sure how to keep in touch.

What’s unusual is that your platelets are low and yet you’re getting blood clots. So what few platelets you have seem to be ‘sticky’, enabling the clots to form.
Has your hematologist done any further testing such as a genetic test to look for mutations?
The National Institute of Health~ National Heart, Lung & and Blood Institute has some good information on platelets…high and low, possible causes and treatments for both conditions. There are several pages so make sure to read all the way to the bottom. A new link with an arrow will take you to Treatment, Causes and Risk factors, Treatments.
https://www.nhlbi.nih.gov/health/platelet-disorders/diagnosis
Steroids can help increase platelets but they also have side effects with long term use. It will be interesting to see what your next round of blood work shows. I’d like to follow along with you on this journey. Do you mind if I check back in with you later next week?

I had a bone marrow test and it came back normal. He took me off of xaralto because he said if my platelets are below 50 I should not be taking xaralto. He wanted me on steroids but my body does not handle steroids. However he put me on dexamethasone. So I am on that for 4 days. I am to have my blood tested on Wednesday. My hemoglobin is 12.5 and platelets 22.

Hi @tongannokie, I moved your message about low platelets and followup to this recent discussion:
- Low Platelets: Diagnosis to be confirmed: https://connect.mayoclinic.org/discussion/low-platelets-1/

I did this so you can read the previous helpful posts and connect easily with members like @rockitman @tyson1221 @loribmt @elenarey77 @kristiann1123 @hlmcneely and others who can share their experiences.

Hi @tongannokie, You’re not alone in having low platelets. There are a number of members in our forum who also have similar issues. Some have a confirmed diagnosis as to what’s causing the lack of platelets and others are like you, where they’re wondering why and what to do about it.
I think this discussion would be most fitting for you right now so here’s the link to:

“Low Platelets: Diagnosis to be confirmed”…where you’ll meet other members, @tyson1221, @rockitman @renee12345, @hlmcneely who may have suggestions or useful information for you.
https://connect.mayoclinic.org/discussion/low-platelets-1/?pg=4#comment-778606
I just have to ask, knowing your situation, why did your hematologist take you off the Xaralto? Have you had further bloodwork drawn to have an actual diagnosis for your bone marrow failure to produce platelets?

So I have a situation where my body doesn't make platelets. They keep going low and low right now they are 22. AND I have had trouble with blood clots since I was a teenager and have been told I will be in blood thinner all my life. So I have to take xaralto. However, my hematoligist took me off xaralto and 2 days later I have a femoral clot. Any idea?

Hi Renee, here is your original post https://connect.mayoclinic.org/comment/778606/

I cannot find my message in the section where you said it moved to. How do I locate it?

Thank you, I appreciate that!

Goodness renee12345 never apologize for feeling anxious about the unknown. The first time I was sent to the oncologist in sept 2021 his first words out of his mouth after greeting me was you don’t have cancer. After 6 months of ups and downs we ordered the biopsy. His tune changed and connected me with a second specialist. I had a couple of mutations in my blood. So now I’ll rotate every 3 months. I too don’t have the concerns that some do but That’s why this group is so good. We’re all walking in some kind of change and as a group we can help you walk through yours. Again never apologize.