but what next… consultant hasn’t mentioned an bmb - is this because of the extended gene testing? Do I need to start looking at ‘other reasons?’ I have no symptoms… would stress be enough?
This do not show any MPN specific mutations with regard to any evidence of a JAK2 (both exon 12 and 14), MPL or CALR mutationAn extended mutation screen was also performed which was negative
also does this rule out all chronic lukemias too?
You really need to get this answer from a MPN Specialist. You can also seek a second opinion. Just speaking as a lay person, I would think that it is unlikely that you have ET or another MPN. Your platelets hover just above and just below the 450 mark used diagnostically. Don't worry about the reference range at the different labs. You are negative for incidents of thrombosis or hemorrhage. In the absence of MPN symptoms and with the negative genetic testing, it is unlikely the hematologist would recommend a BMB. There is no reason to put you through the expense and risk of the procedure in the absence of a clear reason to do so.
It seems likely that you are experiencing some secondary thrombocytosis on occasion. There are various causes for this. I would include stress as one of them, though not all would agree. Here is some more info on secondary thrombocytosis, which you may have already seen. emedicine.medscape.com/arti...
Regarding stress, stress is very destructive to the mind and body. Unmanaged stress can kill. There is no way for us to know all the medical factors you have going, but it is clear that stress is a part of the overall picture. In managing our medical care, it helps to focus on the things over which we have control. Stress management is definitely something where we can take effective action. I learned that the hard way. I handle stress very differently now than I did in the past.
Please do circle back to your MPN Specialist and get a second opinion if you wish. Note that even if you did have ET, the likely care plan would be to take an aspirin and monitor. Or for some, just wait and watch. You can do that on your own accord.
Wishing you all the best.
thanks hunter does this test I had rule out the lukemias?
None of us here have expert knowledge about leukemias, but to put your mind at rest, you should ask your haematologist. I'm sure, though, that if there was a concern, you would be told and additional tests would be carried out.
Some of the mutations are related but you did not do a leukemia panel. There is also no indication in anything you have listed that would make that a concern. I would not seat it at all. I would talk some more with the hematologist to ease your mind.
what’s the extended panel they did? I’m not sure what that means?
It is most likely one of the Myeloid panel that looks for the three driver mutations (JAK2, CALR, MPL) and a bunch of non-driver mutations (e.g., ASXL1, TP53, NF1, etc.) You would have to look at a copy of the report to know exactly what it is.
I finally got the extended profile I’ve had mammograms and ovarian checks I have no symptoms of anything else at all. Not sure what to do next? Latest blood result was 436 (in April) I have looked back at my blood results that I can find since April 2017 and they range from 376 went up to 472 then back down to 370’s and then 450 - 460 and now 436… heam wasn’t concerned told me to exercise and take aspirin. I read that dehydration can cause slight increases. I don’t drink enough - never have done. Would you agree?
thanks for all your support everyone I know I’m being a pain but I’m so confused
it is really good to be searching for answers, but take it like a game. Search and find, but don’t let it stress you out. Like Hunter, I also learned the hard way. Since my diagnosis, I’ve learned so much about my body, nutrition, natural therapies, energy, faith,… My diagnosis freed me up of a life of stress and fear. Im so much happier and healthier at 58 with ET than I was at 42! 😁 Do you to an MPN specialist. They are really the answer for details. Haematologists are just there for normal visits. I’ve seen 8 haemoltologists and only two knew what they were talking about. The MPN specialist was a Head above the 2. 😉
Hi there. That’s great news. So pleased for you. All the MPN markers came back negative. Your platelet count is within, or around, normal range - and you have no other symptoms.
From what you described, your GP and the haem to whom you were referred, were pretty on the ball in ordering tests to rule out any potential concerns. And it sounds like they have done just that. There’s nothing to suggest any concerns on their part about the possibility of your platelet count (which is generally within normal bounds) indicating any other kind of diseases. I hope your GP and / or haem can answer any further questions you have and that this will reassure you
Perhaps it’s worth focussing on addressing your anxiety which you have highlighted in your posts? While it’s great news to get the ‘all clear’ or negative results, it’s not always easy to handle them. Wishing you all the best.
Hi, I’m in the same boat as you, although my platelets are higher - around 530. All tests came back negative, BMB came back negative - and it seems my platelets have hovered around 550-520 for about 10 years. I was put on 75mg aspirin daily 3 years ago and all was well until I had to travel to the US due to family bereavement - I wasn’t diagnosed - only being monitored, so I couldn’t get travel insurance. After a lengthy consult with my GP and consultant at my local hospital I was signed off, with a diagnosis of thrombocythemia - meaning I could get insurance. I undertook to get bloods taken every 6 months and an agreement that if they hit 600 I would be re-referred. So far so good….
How are teachers in US managing their MPN and full-time employment?
Dealing with post-chemo/ET fatigue
Peg results 
Are these symptoms in my head?
Shielding extended 
