MPN Voice
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Helloooooo.... I spoke to my G.P. about how unhappy I am with my Haematologist and I now have an appointment, very quickly, to go and have a 'chat'. This should be fun as he still thinks, dreadful headaches, incredible fatigue, night sweats and more itching than a flea infested pooch are absolutely nothing to do with E.T. Mind you he still says the jury is out on me having E.T. when my, brilliant G.P. Is pretty certain as was my previous consultant even though I'm Jak2 neg. My Nov platelets reading went down to 559 and has been creeping up to last weeks at 689. He still says he's happy with those figures!!!! Best I have a Brandy first😁

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I have E.T. Jak negative. I am CALr positive, though.

There is very good information in the downloadable leaflet on the MPN voice site.

You could down load this and take it with you and maybe ask to be tested for CALr gene mutation (only a blood test ).

Good luck


Thank you Mol56, I have used the MPN site a great deal I will look up the test. Thanks very much for your advice I will definitely give it a try.



Glad to be of help.

I asked about the significance of the positive CALr test and JAK negative tests.

The lovely nurse said that the more information they have about the patient can help them know how best to treat them and of course new drugs and research information are available a lot now.

I was diagnosed 11 years ago with E.T. when the condition was known as a blood disorder and JAK/ CALr gene mutations were not widely known.

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Hi there, mine go up and down like a yo yo. This might help my Drs me told me platelets only live for 7 days then they die off and of course new ones are created so it just depends when you get tested and sometimes different labs are different in the testing.

As I am told ET is a diagnosis of exclusion they just used that if you are Jak2+, BMB and platelets increased as ET but many people are Jak2- that have ET, I believe that only 50% of people who have ET are Jak2+, mine tested me for the Calr gene also. Mine always said you can't diag without a BMB, I don't know how true that is this site and Maz are more informative then me. Mickey


Thanks Micky, I've yet to experience the 'yo yo' readings. I've been having FBC done every six weeks, luckily at my G.P's. I remember my BMB well not, however, with fondness😁.

Thanks for the reply, onwards and upwards, after a quick snooze!!!!!!!!!!



Hello Nodmeister

Do not wait...find another Hemotologist ASSP

I had a similar situation with my ET. My symptoms were out of control so I

did some research found a new doctor and could not be happier or healthier!!!!


Cheers, I have to have the 'chat' first, if I'm still unhappy I can go back to my G.P and set the rest in motion.




who is your haematologist? I have a brilliant consultant. Platelet counts are really individual. Some people are fine with higher counts, mine are in the 550+ and I'm fine, fatigue, but that is normal. Others have to be with much lower counts. Have you been on any support groups? I can give you information on 2 if you want?



I am at Dorchester, Dorset with Mr Hofer. I started with Mr Moosa who was sure it was E.T.

I would like the support group details please Oribth. The only group I am with is this one.

Thanks a lot.

Nod x


Dr wants me to increase dosage for 3    weekends.

Will I feel      a great    difference on hydr?



I know this is an old post but any updates?

I have ET. Negative Jak2 and being tested for CALR next month. Diagnosed 11 yrs ago with ET and have been seeing a heamatologist since.

Mine currently sit at 700 roughly. Its a huge pain in the ass.


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