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Waiting for tests for PV?

NickyTillyMegan
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I’m a bit lost waiting for tests for possible Pv, I’ve had haemacrit & haemaglobin going up over the last four years( noticed by my endocrinologist I see every 6 months for PCOS) it’s taken quite a while to be seen by a haematologist & had a blood test for jak 2  test which took 5 months to get the results which was negative & now I’ve had a exon 12 test& I’m waiting again& have been told my appointment will be 4 months, but I will be sent for an ultrasound in the meantime. 
I am confused if this is negative too then what is the condition as I can’t really find any information & I’m not sure who to ask, I feel like a bit of a fraud& if I mention it could be cancer to my husband he freaks out( he’s just been medically retired due to CFS/ ME) 

  • Hello and thank you for your post.

    I am sorry to hear about the worry you have about the tests that you have had and are going to have.

    It must be frustrating to not know what may be the matter. However, I do know that sometimes it can take a number of tests or investigations to find out what is the matter. Some health problems are not easy to diagnose.

    From what you tell us it looks like your next test is an ultrasound scan. Hopefully, this will give more information and help with a diagnosis. So, perhaps waiting for this to be done and then the results is what you should be doing next. However, I know that waiting for results is never easy. 

    I hope you have some support. You may also find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline

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