jak 2 test

[djleighp]

does anyone no where I could get this test done privately as I have no faith in my gp and the nhs how much would I be looking at

[RoundTheWorld]

I don't, but ask to see a different GP? Perhaps also of relevance to you (as I assume you are regularly monitored by a Cardiologist) my own Jak2 test was ordered by a Stroke Consultant - he knew that my blood test results and 'young' thrombotic event could both be linked to MPNs.

[djleighp in reply to RoundTheWorld]

I have been discharged from cardiologist now they put a loop recorder in and then discharged me

So my gp says it’s secondary but with the high wbc and high rbc I don’t know if the monocytes are high as well my wbc has a 13.51 rbc 6.53 hb was 186 and heamocrit 0.558

And I haven’t been diagnosed with a mpn yet everyone keeps saying those numbers are high my go keeps saying due to smoking so fobbed me off

[RoundTheWorld in reply to djleighp]

Hello again. It could be secondary due to the smoking (if at all possible I'd stop that - I know it is easier said than done, but the associated risks are real).

PV patients do have a raised risk of blood clots, which appears to be thought to be linked to raised haematocrit and WBC (not sure about RBC) more than platelets; the MPN Specialist I saw commented that my HCT had been 'properly high' (and it wasn't as high as yours). Worrying about the cause won't be helping your blood pressure, so it is well worth asking to see another GP (which your surgery should be open to anyway) and explaining your reasons for needing clarity re. causes and asking for a referral to haematology. Alternatively you could try to see a private MPN Specialist for a one off self-pay appointment if you don't have private cover, but you would (I assume) need the GP to refer you, so I can see why it is difficult.

Obviously, if nothing else, if you had a negative Jak2 result, although it doesn't completely rule out an MPN, it could give you extra motivation to control the things you can to reduce your risk.

I know you probably know all this! Good luck.

[akonline]

Hi, if you have been diagnosed with a MPN this is standard procedure, and also important to know. Can you ask to be referred to a specialist clinic, eg. Guys & St Thomas in London? Good luck!

[Itchy-Scratchy]

If you have a diagnosis of MPN then contact Guys, asking them about getting a referral from your GP to them.

That should help you significantly when you ask your GP.

guysandstthomas.nhs.uk/our-...

[Scaredy_cat]

But remember you can have an mpn without jak2 mutation. You could be alright or triple negative etc.

[nellietheelephamt]

That's pretty much my experience as well although my GP is very good and supportive but the haematologist doesn't want to know and just discharged me at every referral - last time without any appointment being made. My GP has made a private referral for me but the earliest date is December and a 100+ mile round trip. You could see a different (even private) GP.

[djleighp in reply to nellietheelephamt]

how much was the private referral

[nellietheelephamt in reply to djleighp]

Private message sent but costs will vary depending on consultant of course.

[DougyW]

My GP ordered my JAK2 test. I support Round the World. Your practice should be able to let you see a different GP.

[Sammy_s]

It's a test that a hemotologist would request to confirm if you have that condition. Suggest you request a referral from your GP to an MPN Specialist in your area - google is a good starting point in finding someone good. Best wishes

[djleighp]

well I’ve had results back and they higher than before and doctor says it’s secondary as my epowas 8.3 my heamocrit was 0.58 and hb is 19.3 I think this is way to high but I’m not being listened to I’m gunna just pay for a private test