Just a recap on my situation… 52 year old female under the care of a Haematologist for the last 2 years for platelets over 450. My latest platelet count is 486, the lowest it’s been since referral, prior to that 550-600. Negative for the three main genes. Gastroscopy and Colonoscopy all clear. Do have Vitiligo, Underactive thyroid, Irritable Bowel and allergies. All other blood parameters fine apart from slightly high Eosinophils.
Today I had my telephone appointment with my Haematologist to discuss my latest platelet count result. After being on iron tablets for over 8 months now my platelet count has come down however, it is still over the 450 limit (486) even though my ferritin levels have now been rectified.
I asked my Specialist if I should be on aspirin to thin my blood but she said that as I’m still menstruating regularly then no as it could contribute to depleting my iron again. She also said she feels as though my case is trending towards “reactive” although she advised that she couldn’t be 100 per cent sure and only a bone marrow biopsy would give a definitive answer which she doesn’t recommend doing unless my platelets ever go above 650.
I asked if I should be checked for lung, breast and ovarian cancer as I believe they can be associated with high platelets but she said she doesn’t feel the need to test for these as I am not showing any symptoms…
So as it stands I still have higher than normal platelets, there is still no definite answer for them, I am not on any type of blood thinner and I am not being forwarded for lung, breast or ovarian cancer testing. I am sort of stuck in limbo being monitored every 4 months now instead of 3.
I am aware that my platelets are only 486 so not too bad compared to others but I’m just wondering what other peoples opinions are about blood thinners at this level and if the ruling out of lung, breast and ovarian cancer should be automatically ruled in or out and not ignored in the absence of not having any symptoms? Many thanks! x
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Purdy13
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Inflammation and iron deficiency are both causes of reactive thrombocytosis. Given that your PLT dropped with iron supplementation, it seems reasonable to think that you may be experiencing reactive thrombocytosis. In that situation, a blood thinner is usually not recommended because the hemorrhage risk outweighs the putative benefit of reducing thrombosis risk. This is particularly salient as you have a history of iron deficiency and are still menstruating.
You are correct that the only way to rule out a triple-negative ET would be to do a bone marrow biopsy. That would be a judgement call on whether it is worth it. While it is a safe procedure, there are still risks to a BMB as well as the discomfort of the procedure.
I am doubtful that any of the imaging studies for the cancers you are concerned about would be indicated. Imaging, while relatively safe, does also come with risks. We always want to keep X-rays to a minimum. You could ask about whether that are any blood biomarkers that could be tested, but I doubt that they are actually indicated in the absence of symptoms.
You have a complex case that needs careful consideration of all of the factors in play. It sounds like your hematologist is taking a considered approach to monitoring your case. It can be hard when there is not a clear answer to your diagnosis. You could certainly seek a second opinion if that would make you feel more at ease with the situation. Suggest using a MPN Specialist if you decide to pursue that option. mpnforum.com/list-hem./
Wishing you all the best. Hope you find answers soon.
Thank you so much for taking the time to reply Hunter and, as always, such an informative response too.
I think I just get confused at times as I read that some people who are investigated for high platelets seem to have some of the imaging tests done as standard whereas my Haemo would only do them if symptoms were present…. There’s always a concern that something may be getting missed….
My platelets are lower now than they were when all of this started 3 years ago which is a good thing. I can’t help but feel that they may still be elevated due to my Eosinophils also consistently being just over too (mine are 0,53, cut off is 0.4). I ask if I should be having any tests for high Eosinophils but my Haemo is putting them down to allergies (which I do get) and says that they would only get investigated further should they get to 1.5 which so far they never have done.
It seems to be just an endless “watch and wait” situation in my case but I shall plod along as always. Thank you again! X
Your situation is similar to mine! I was so surprised to read it.
I recently had a full blood count done as part of a procedure to have 2 teeth taken out under sedation at our Dental Hospital. I am dental phobic and have various health conditions including M.E. /CFS SND COPD. My platelet count was just over at 470 which although not much did concern me. They said the results would be sent to my GP Surgery but I’ve had no contact from them at all.
In the day of the procedure, all staff were great and the anaesthetist had a chat with me about why they couldn’t give a General not as much sedation as previously. I brought up my worry about the raised platelet result and he wasn’t bothered at all. He said as it was just over it could be anything. He also said something I deemed as more significant. That is he could have been more concerned if any of the other stats had been raised or lowered which would have been more if an indicator of things being out of sync or wrong. He was quite happy to go ahead with the procedure and said there was nothing to worry about. This did out my mind at rest somewhat even though there is still that little niggle.
In the past if something had been out such as when my cholesterol went up, the surgery have always contacted me to go in or have a telephone consultation. On this occasion they haven’t so I’m presuming there is no issue for concerns I may ask for another blood test though in a few months to see if there is any change.
It’s all of the uncertainty isn’t it and always little niggling doubts that creep in….but it is the same for everyone going through these types of situations… My Haemo isn’t overly concerned at all and neither is your GP by the sounds of things so we should take a little faith in that and hope that one day things will be more clear… I wish you all the best! X
Unfortunately, "watch and wait" is often "watch and worry." It is understandable that you would want a more definitive answer. Having had a few interesting health learning opportunities in addition to the MPN, I have had occasion to have to wait for an answer. My experience is that the fear of the unknown is usually worse than the reality of the known. To the best of my ability, i do not worry until there is something to worry about. I stay focussed on living a good life and let go of the things I cannot control.
Get a second opinion . I was told never to take iron tablets as it increases platelets when in early stages of diagnoses. My platelets were 590 . I got an appointment at Haemotology at local hospital & further tests sent away & diagnosed ET. I expect you have had all those done . Julia
Hi Julia, that’s totally the opposite to what I’ve been told…. My ferritin levels were low and I was in the “pre-anaemic” stage, I was told I needed to take iron and that it usually brings platelets down which it has done albeit still over the 450 cut off. This is exactly why I doubt and question things sometimes as it seems all Specialists have their own way of doing things often conflicting each other??? X
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