Good morning
My platelet level has been rising gradually and has now reached 530. I received results of the JAK2 test yesterday and it showed 2% (reported on the NHS app).
Does anyone know if this is a true positive at such a low level, and also what can I expect to happen now regarding further tests.
Thank you
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Hi @HelRol a great big welcome to our forum.
I reckon that it the wrong way round when we can read our results on our NHS App before seeing our medical provider. This is just a personal opinion, although I do realise it does help us form our questions for our next appointments.
The questions you ask I believe are only questions for your medical team that asked for the tests. They know you and your whole medical history and why they requested the tests and whether and what medical tests they might require.
Please do let us know how you get on and really look after and be very kind to yourself
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Thanks Erica! I totally appreciate that medical advice canāt be given on this forum but Iām really just curious as to the type of experiences people have had when starting their journey.
My GP was initially unwilling to address the high platelet levels and it was only when I pushed for further tests that she wrote to haematology for advice and consequently the JAK2 test was ordered.
I work as a research nurse so Iām aware of the difficulties faced by both Primary and Secondary Care services at the moment. However, now Iām on āthe other sideā Iām perhaps less understanding. My job has also shown me the importance of patient experience - we need to listen to our patients more - we can learn a lot!
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Hi @HelRol yes, patient care is supposed to be āpatient ledā now.
You also show so clearly that you have to be your own advocate sometimes.
When I was first diagnosed 21 yrs ago I was told to take responsibility for my condition.
I had no idea what that meant at the time !!
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Hello there @HelRol, welcome to the forum. Iām so sorry you had reason to join but Iām very glad you found us.
I was diagnosed with the JAK2 gene mutation in 2023, and understood that it was either a positive/negative test result. Iām not medically trained and had never heard of JAK2, let alone gene mutations, but checking my own medical records from my diagnosis donāt show any percentages.
Like dear @Erica wisely says, itās best to ask your specialists, but as youāve received results showing some level of JAK2 then I imagine further testing will occur.
Many people around the forum diagnosed with JAK2 mutations have said they tended to then have a bone marrow biopsy and aspiration to check blood cells at their source. This then indicates if any further diagnoses match.
As you have nursing expertise Iām sure you can understand medical jargon and what JAK2 mutations can be related to, but Iād say the biggest worries will be the waiting in between tests and results and trying not to assume the worst. Now is the time to find healthy distractions and ways to tend to your self-care.
Iām hoping your referral to haematology via your GP will now move further testing along. If they havenāt already, perhaps encourage your GP to explain whatās next since your diagnosis with JAK2.
Please let us know how you get on @HelRol and remember to look after yourself and ask for support from loved ones at this understandably anxiety-provoking time.
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Hi @HelRol I was told that 4% was the lowest that could be shown as positive as tests are not sensitive enough to tell if it is a true reading below that. I was also told that this was the figure the majority of people would have as a JAK2 reading and it would not effect platelet numbers at that level. It may depend on the lab used so it is definitely a question to ask your GP or consultant.