I went to my GP in the summer of 2024 to get some HRT for fatigue, brain fog and pain but was told I needed to have a cancer scan first as my platelets had been high for several years. I caught Covid in November 20 and didn’t recover fully. My platelets went from 280 pre-Covid to between 480 and 600 post Covid. I had a CT scan, all clear and a negative Jak 2. I haven’t heard anything about the CALR and MPL results but was told they would be negative if I didn’t wasn’t contacted (which I wasn’t). The haematologist said my raised platelets were likely to be reactive as I have Long Covid, fibromyalgia, asthma and heavy periods. I have had asthma and heavy periods all my life and bloods have always been fine. I have had fibromyalgia years and years before my platelets so it seems to be Long Covid. I know of one case of thrombocytosis in medical literature and Long Covid and one case IRL but the patient was also anaemic. No one in my fibro FB group has high platelets. So I seem to have some kind of unknown condition which causes high platelets and there is absolutely nowhere to turn (no Long Covid clinics in my health board area, just advice to rest), which is as annoying as concerning. The haematologist said my symptoms - significant fatigue, pain, pain amd migraines, were very unlikely to come from my platelets, even though my leg bone pain is new. She also said with slightly raised platelets a BMB wouldn’t be helpful. I have another appointment in six months. I am 49 and have high blood pressure and high cholesterol, both treated and probably hereditary. I find it frustrating that I don’t have a clear explanation and might be falling through the cracks of the system.
Dear @mazeoffire,
I am sorry to read what you have been going through and your understandable frustration that you haven’t yet had any answers.
It is good that you have seen Haematology and had bloods to rule out any genetic change which could be causing the rise in platelets and also that you have had a CT. Although I do understand this doesn’t help with finding out where your symptoms are coming from.
Have you been back to the GP since you last saw Haematology? If your haematologist does not think your symptoms are from your platelets we would encourage you to go back to the GP so they can continue assessments to find the cause.
If you would like to talk things through you would be very welcome to call us on 0808 2080 888.
Best Wishes,
Heidi J (Support Services Nurse)
Thank you for your detailed reply. I’ll make an appointment with my GP but I suspect that they’ll just put it down to my Long Covid, for which I was told the only thing was rest, and/or my fibromyalgia, for which I don’t want to up my meds. I might phone your information line as well to discuss whether requesting a BMB might be a sensible thing to request. Thanks again!