I just thought I’d give an update after my latest phone call today with my Haematologist incase my info is helpful to anyone else going through similar….
A quick recap….nearly 2 years ago it was found I had a higher than normal platelet count (high 500’s) during a routine blood test. As this didn’t come down to below 450 over the next 6 months of monitoring I was referred to a Haematologist. I’ve tested negative for Jak2, CalR and MPL. I’ve also had an all clear colonoscopy and endoscopy. Other things I am diagnosed with are hypothyroidism, irritable bowel syndrome, many allergies and vitiligo.
Whilst conducting her tests the Haematologist said I was Iron deficient but not to the extent that I was anaemic. She said that iron deficiency without anaemia could still cause an elevated platelet count. As such I was to take iron tablets for 6 months, I am currently at the 3 month mark and my iron has improved and platelets have come down from 565 to 513.
My understanding was that if my platelet count wasn’t below 450 after another 3 months of iron then I’d be having a bone marrow biopsy however, today the Haematologist said that because my platelets have reacted to the iron by coming down, and because they are lower now than when it first started two years ago that she strongly believes my case to be Reactive Thrombocytosis. She has said that even if my platelets do not come down below 450 once the iron course is complete she now feels that the right course of action in my case would be to monitor and only revisit the possibility of a Bone Marrow Biopsy should my platelets ever go higher than 650.
She says that although platelets do fluctuate the trend is that with ET they would get higher and higher over time not lower as mine seem to be doing. It may be that I never go below the ideal 450 mark but she still doesn’t feel the need, at least at this point, to go along the lines of a Bone Marrow Biopsy….
I’m a bit stuck in limbo how I feel…. I’m obviously thrilled to avoid having one and I am pleased she believes it to be Reactive but there’s always a niggle that without a BMB ET cannot be ruled fully out. However, she is the Haematologist and she has reason enough to believe that it’s reactive and theres no need. I am pleased that she will still be monitoring though and will reconsider her decision at a later date should platelets ever go over 650.
I’m just keen to know as to how many of you out there would be happy to go along with this and trust her opinion based on her experience and knowledge of the pattern of ET and how many of you would still rather push for a bone marrow biopsy to find out for sure? Many thanks! x