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
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Purdy13
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Totally understand where you are coming from! However, you seem to be getting good and thorough care. And, as your haematologist says, your platelets are coming down not going up - and without drug treatment. It’s easy to get hung up about numbers but the critical thing is the trend. Because BMBs are invasive, in general haematologists don’t rush to propose them and they are not widely used as a diagnostic tool. The fact that your haematologist is keeping an eye on you and clearly has a plan if your platelets start to climb all seems good and sensible and worth sticking with. Wishing you well.
Thank you so much for your response…. I think my anxiety levels have been so high for so long over this diagnosis procedure that it’s difficult for me not to panic about anything and everything right now but as you say, everything she says does make sense and there is a plan in place should things change so I will trust the process and hopefully things will become even more clearer in time….x
It sounds like you are on a prudent course of action. Note that even if you have a triple-negative ET, the treatment protocol would be aspirin and monitor for someone who is in the low-risk group with your platelet levels.
Just for comparison, my platelets counts were high, from 550 to 750 for three decades before other raised blood counts (and tiredness (etc) along with the aura migraines I'd had on and off for these many years) sent me to a hematologist/oncologist for testing for ET. This soon resulted in a diagnosis of PV. My age (64 last fall) also "qualified" me for further investigation, including a bone marrow test. I suspect attitudes toward platelet elevation have changed in medical circles so that doctors sound the alarm earlier now, but I just wanted to add my story to the picture. No clots or strokes to this point. Hope you can keep on top of the issue, but relax and be well!
Purdy13 you are not alone with the high anxiety levels. It's a challenge to keep anxiety in check when there are so many unknowns. It sounds like your doctor has a good plan laid out for you so far. Maybe see what happens in 3 months once with the iron pills vs your platelet level. Hopefully you'll continue to trend downward and all you'll need is some iron supplementation occasionally. Good luck.
Thank you for your positive reply Ligeba, anxiety has certainly been my biggest challenge throughout this, being told you could possibly have an MPN in the beginning when you don’t even feel unwell and then googling all about it was certainly a shock and eye opener! This group has been amazing though…. x
Hello, you and I previously exchanged info because we are somewhat in the same situation. My platelets went over 400 about 5 years ago and my white count is always a little high (like 11-12). I had the full slew of testing 5 years ago and a bmb 3.5 years ago, but when my platelet showed up as 500 in June I was sent back to the hematologist. It was 469 when I saw him and I just had a cbc today and they are 433. Like your Dr, he thinks that this is just me and it’s not of concern. I asked about retesting jak2 and calr since those were tested 5 years ago and not at the lowest sensitivity thresholds but he didn’t seem inclined to do so. Like your Dr, he says he has about 15 patients with mpns and thinks my counts would have progressively gone higher over time.
I think in the US, as ridiculous as our health system is, you would have been offered a bmb by now. I’m not sure whether that’s good or bad but it did and does offer some peace of mind.
I have been quite anxious and am hoping learning today that my numbers are a bit down (not sure if a difference of 30 is statistically relevant or just standard deviation but at least they don’t seem to be trending up) will help me calm a bit. I’ve lost 10 lbs in the past 8 weeks and am exercising more and was hoping that could get my numbers under 400 but alas no.
What were your iron numbers? Mine were kind of borderline but in range of normal so it’s likely not an iron deficiency.
Could your thyroid condition be the cause of your high platelets? I think I’ve read hashimotos can be a cause. I actually asked about getting a thyroid workout as an outside chance that it could show something but since my tsh is normal he said no.
Hi Labbymom, yes I do recall our previous conversations and I’m glad your counts have come down slightly easing your anxiety….
I think I will know more with my next bloods and appointment in 3 months time. My iron levels are pretty good now, Ferritin 98 and transferrin saturation at 27 %. My platelets are down by 50,000 now at 518 so still over the magic 450 limit. I personally don’t think that taking any more iron will lower my platelet count further but you never know…? My haematologist still wants me to take for another 3 months in any case as she said it will continue to build up my iron stores.
I just thought that as long as I was over 450,000 I would be having a Bone Marrow Biopsy as she did mention one previously but after seeing my latest results she just says that she doesn’t feel it’s an MPN as I’m triple negative and my count is trending down instead of up. I am concerned that she might be wrong but she did say that if I ever went over 650,000 she’d reconsider doing the Bone Marrow Biopsy.
I do have a few auto-immune conditions such as hypothyroidism and vitiligo aswell as flare ups of irritable bowel syndrome but as of yet she hasn’t committed to diagnosing anything to a definite reactive cause. I have lots of allergies too which she says can also raise platelet count.
Once I know more in a few months time I will update on here. Best wishes x
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