Has anyone had a Jak2 Blood Test for blood disorders?

[Otto11]

Hi

I've had high Platelets for years about 20 at least on every blood test. GP always just said your Platelets are high but we know that! rheumy often mentioned it too. Recently I have been seen in Endocrinology (in a different hospital to my rheumatology team) & been having regular blood tests since starting T3 for Thyroid issues. My endocrine Nurse picked this up & has mentioned it to the Haematologist who has asked my GP to do the above Jak 2 blood test. I asked at my last rheumy appointment if they had every done this blood test to rule anything out. I expected them to say yes tbh but they said they doubted it. I had the test on 1st May but still no result. My NHS App stated it has been sent to a specialist lab & reading on the internet it can take at least 2 weeks for the result to come back. Its quite scary reading up on it as its mostly about Bone Marrow cancers & Leukaemia etc. Has anyone else come across this before. I'm not too concerned as i've had high Platelets for so long.

[Spanelmad]

Yes I have zero neg arthritis and I'm also ET jak 2.Like you platelets were high from the start but I had a thrombosis incident 2 years ago bilateral pulmonary embolism, and was finally diagnosed 7 months ago.I've what is classed as an MPN a form of blood cancer.

Try not to deep dive the internet as it's scary.

The bloods test has to.go.to a specialist unit and takes awhile to get the .results.

The MPN voice site on here may help you.

[Otto11 in reply to Spanelmad]

Thanks for your reply. I’m sorry to hear you have gone through this. The PE sounds awful. Are they giving you any treatment? I saw on my NHS App that the sample had gone to a particular unit for testing. My levels fluctuate between 500-700 so not terribly high. I’m hoping I will have some results this week. No one has spoken to me about it. My Endocrine nurse wrote a letter saying the Haematologist has asked my GP to do test. GP reception say they will contact me when they have results so that’s why I’ve been looking on the internet a bit. I’m pretty sure my Rheumy team would have checked in the last 24 years since diagnosis had they been worried. Thanks for your response & help. Take care x

[Spanelmad in reply to Otto11]

Yes the PE wasn't fun!! If been trying to get someone interested in my levels that had been over the threshold for at least 10 years, always between 500 and 700. My Gp had been pushing but the local health board has a level that has to be reached normally a 1000 before a heamtology appointment.Rheumatologist was always dismissive saying raised levels were dehydration! She now can't do enough for me .

I've so far tried 2 drugs first I was allergic too, the second were currently on a break because of neuropathy.

Treatment at my local hospital has been with locams and they seem to be very under staffed.So I asked for a second opinion from a MPN specialist, so next month on off to Guys hospital (London).

It's really good that they're doing the tests, try not to worry it might be your levels run high naturally.

[Otto11 in reply to Spanelmad]

Poor you but glad you are getting a second opinion. I hope they can help get a better plan in place. Is it possible for levels to be naturally high? I guess GP thinks so. I never thought to challenge him. I challenge everything now as they have made so many mistakes however my Rheumy team are amazing & i'm sure they would have looked into it if they were concerned. It's strange after all these years it's Endocrine who pick up on it. I'm on enough medication as it is & really don't want more. I have RA Epilepsy Hypothyroidism (only have half a thyroid) Asthma & Bronchiectasis. Lung nodules caused by RA too. I'm not too worried I just wish the tests would hurry up then we know for sure. You take care. Hope your appointment goes well.

[Autolupus]

I had a Jak2 test after I had a mesenteric vein thrombosis and a pulmonary embolism which as Spanelmad said isn't fun. They only did it because 20 years ago I had consistent APA positive results but which hadn't been tested in decades. My test came back negative. It is a very specialised test that takes time and Dr. Google can set your mind whirring. Best to wait to know for sure rather than speculating. Hope you get your results soon.

[Otto11 in reply to Autolupus]

Thanks. I'm sorry to hear about your thrombosis & embolism it sounds awful. I'm not sure what APA is. I know i'm just getting a bit impatient. No one told me anything about it at all so I had expected it back in a few days alongside the other bloods I had that day for biologic Monitoring & Thyroid monitoring. I only found out with the help of google that it had gone to a specialist unit. I sent a message to the GP's but got a text back from reception to say they will let me know when they know. I would have liked a bit of an explanation but I wouldn't be at all surprised if they don't know what the test is. Take care & thanks for your reply.