Low Platelets: Diagnosis to be confirmed

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.

Hi renee12345

I went from normal platelets and high monocytes to low platelets in a couple of years. Had a bone marrow biopsy but at the time they were clueless. My research always pointed to lupus or leukemia. Last year a lot of things changed and went low platelets.
When they dropped to 64 I had a second bone marrow biopsy. With better technologies or better doctors ( no slam there ) I was diagnostic with MDS. I am on a wait and watch with blood work now at every 3 months. There’s a lot of good info here and great people to help you. Keep us informed.

Now i read about everyone else’s platelet problems-
Guess my worries are not very significant in comparison. My apologies to all.💙

Thank you
No new meds, no new symptoms. Nothing has been ruled in or out. Not sure why my md wants to wait so long before she retests me. Very anxious about this. Lots of stress this past year w my mothers illness.

Welcome @renee12345.
You might also be interested in this related discussion:
– What can I expect with Antiphospholipid Syndrome (APS) https://connect.mayoclinic.org/discussion/aps/

Renee, it sounds like you're not taking any new medications. Have you experienced any recent illnesses or other change that might help explain the cause? What has been ruled out?

My whole life I’ve had normal platelets til now. Found out they are 130,000. My md wants to wait 6-8 weeks to retest. This seems like a long time . I also have lupus anticoagulant aka antiphospholipid antibody; but no new symptoms re low platelets. Been on coumadin 35 years.
Anyone have similar problem with low platelet count and follow up?
Thank you in advance.

Hi @rockitman Well, I guess some good news is that your results are negative for any cancers and MDS but, you certainly remain a mystery man. That’s really frustrating for you and your doctors, and of course, at this point there’s no way to know if the vaccine was involved or not. There are certainly people who have had reactions they feel are correlated with the vaccine but it’s difficult to prove because there are others with similar maladies which developed prior to Covid.
It’s reassuring that your doctor at Mayo continues to delve deeper into finding an answer for you. Keep me posted, ok?

I got my bone marrow aspiration & bone biopsy Nov 1st. I just got back the results Nov 23rd. The results came back Negative. So, I still have no diagnosis after two bone marrow biopsies and numerous blood tests.
So far, no markers for cancer and negative for MDS etc.
I have low platelets, low white and red blood cell counts (2.0) and between 7.2 and 8.1 for Hemoglobin.
At 7.2 (Hemoglobin) I had to have a Blood transfusion due to difficulty breathing. I get weekly platelet transfusions.
My Mayo Dr is starting with additional blood tests next week and another Bone marrow biopsy.
Still a mystery to me and the Dr's.
This all started after getting the COVID VACCINE and Booster shot. Coincidence???

Hopefully they go up I’m new here an mine are 39.000 wen do they start treating low platelets also rbc wbc are also little low

Hi Colleen I have been getting injections for over a year now and I saw the oncologist on the 15th. Tomorrow I go in for blood work and an injection but I really don't expect any big changes although I am hoping to have a better platelet level fingers crossed