Hi all. I’ve posted on here before but have updates so just going to tell my whole story again. I would truly appreciate any input.
I am 24F with platelet counts of over 500 for over 10+ years. I have always suffered with fatigue, nosebleeds, migraines and headaches.
I was referred about 2 years ago to haematology. My iron at the time was low, they gave me an iron IV and this was corrected. All mutations negative, BCR negative and they ruled out reactive thrombocytosis. NGS was done and clear too. All tests were completed and apparently, no signs of MPN showed up.
They did a BMB and told me, that it was not consistent with MPN but the chip of bone was not perfect so they couldn’t 100% rule it out. They put me on 75mg of Aspirin for the past 5 months and I thought it was helping but I’ve just felt worse and worse. They stated I will probably have a repeat biopsy in one years time.
At my most recent appointment, I was informed of a new guideline from BSH. This states that Idiopathic Thrombocytosis of Undetermined Significance, most closely reflects my situation and they placed me under this category with ongoing monitoring. This gave me some home and some answers!
I was out sick from work with mental health and side effects of these symptoms and other medications that I am on. I work 5 days in a busy office and find this worsens my symptoms. I requested a letter from my haematology doctor to show work I need accommodations. In this letter it states “a BMB was performed and is suggestive of an MPN”.
This is completely opposite to what I picked up at my appointment after the BMB, where I was told it was not in keeping with a diagnosis of MPN.
I am extremely lost and confused. I have done as much research as I can over the past 2 years for this. I am waiting to hear back from the doctor for details and explanations.
Could anyone shed some information on what it is/might be/could be/ will be?! Is triple negative thrombocytosis a subtype of ET/MPN? Is ITUS an early stage MPN that will most likely develop when I get older?
Thanks everyone!