I’m still undiagnosed - it will be a year next month I’ve been dangling, waiting on a definite “yes you have MPN ET.” I’m triple negative and BMB is also negative so paid to see MPN specialist - who agreed with haematologist that “it sounds like MPN ET” and if you were my patient, I’d suggest keeping you on aspirin and wait and see”. However, I had to get all my papers from haematology dept for the private appt and I read that the pathologist who did my BMB analysis said he thought high platelets (560) were secondary and that “we” should be looking for primary cause. Haematology dept disagree - kind of stumped as to what I do next. Anyone any ideas? I’m 68.
Meg
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Megabyte
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Will do - I'm getting fed up pushing all the time. I've had 3 phone consultations over the last year with 3 different doctors - can't even see anyone face to face. I'm really frustrated. I just need to know what's wrong with me.
hi there - did you ever figure out what was going on with your blood counts? I’ve posted recently about a similar situation (although 20 years older than you)
What the MPN Specialist suggested makes sense. Step one is to follow the aspirin and monitor protocol. In the absence of thrombotic/hemorrhagic/microvascular events, that would be the sensible thing to do. Note that even though you are over age 60/65 and thus considered "high risk" if you do have ET, not all MPN Specialists strictly follow the age-based protocol. Some look at each patient's protocol before recommending more aggressive treatment.
Do follow up on potential secondary causes. The diagnosis of triple-negative ET can only be made when the potential causes of secondary thrombocytosis have been ruled out. Once the care team is certain there are no secondary causes, the answer is triple negative ET by default.
As EPguy suggests, more extensive genetic testing would be a logical step. There are myeloid panels that look at a wide range of genetic markers. There may be some clues in this that will help. They will also recheck for the three driver mutations.
Easier to say than to do. Do not bend yourself into a pretzel while trying to sort this out. Some people with your profile diagnosed with ET would be on an aspirin and monitor protocol anyway. Not everyone is best served by cytoreductive therapies. In fact, 600 is the target used for cytoreduction by some MPN Specialists. You are already below that.
Please discuss your actual risks based on your individual profile with your care team. Your care plan can go from there. I think the MPN Specialist has already assessed that and made a recommendation. Going forward you can work methodically towards a more definitive answer knowing that until you have one you have a good care plan in place.
Please do let us know what you learn and how you get on.
What a predicament. As a normal course of action I understand that I had my spleen scanned endoscopy and colonoscopy , chest x ray and all my glands checked for secondary ET before concluding I had ET.Fortunately my bloods showed I had the Calr mutation..
That's what I don't understand if they just did the blood test first surely the secondary cause after is a better way. I'm going to haematology (again) soon with higher than normal platelets. And I hope they offer the blood test first because I already have a family history of colon cancer and gets colonoscopy every few years. And as regards the other cancers surely blood tests would give them a clue. I had a similar thing happen with me in 2008 2009. I was watched for a few years and to be honest after being discharged with normal for you...I wouldn't have had a clue what to look out for. I'm better informed though now. I understand your frustration. I last had bloods done previous to this in 2015.
I will only speak from my experience. My platelets were in the mid 700's in 2017. My PCP thought nothing of it until I asked what was up with that. He referred me to a hematologist. In 2018 blood test report platelets high 600s, plus JAK2. Hematologist said, take a baby aspirin everyday and we will wait and see. Since that diagnosis of wait and see, I've had SVT, AFIB, 2 cardiac ablations, and just recently (january) a femoral artery clot. Went to see vascular specialist. He put me on xtra aspirin and Xarelto to thin the blood to try and dissolve the clot. One month later, the clot had in fact dissolved. The only trouble from the clot was purple toes and foot. Lucky. I am now on Hydroxyurea 1000mg 5 days a week, and 500mg on the weekend. Bumped aspirin up to 300mg per day as well. I will go tomorrow for blood lab and see what my numbers are.. (HIND SIGHT) I am pissed that my PCP didn't act sooner when my platelets were in the 700's. I had to be very blunt with my new hematologist and ask the direct questions..............IS THIS CANCER OR NOT, ETC????? I am now understanding the consequences of this condition (ET), and as a single woman age 60+ I am now my own advocate. (Very Loud advocite i might ad)Keep searching for answers and asking the questions. Best wishes to you. Jen
Wow, that is really frustrating. You’ve really been through the ringer. I’m glad they finally got you on hydroxyurea. I hope things get better from here.
I will receive my Dx next week--and by the way, I never would have followed thru getting a hema without this forum. I stated that my platelets were 760, and Hunter and many others set me straight. I find so many of the replies so important and I want to save them, how do I do this? I see "save post" when something is posted, but how do I save your wonderful replies. Sure hate to sound dumb, as well as sick!!
Sorry to hear it’s taken so long, I was 5 years before I got a proper diagnosis do hope you get sorted soon! You mentioned you paid to see the see a MPN specialist was this in the uk? As can not get my Gp or Haematologist to refer me.
Yes, I live in Ayrshire and the MPN specialist was on a list given by hunter5582 last year. The specialist is well known at the NHS cancer hospital in Glasgow, and he has a clinic in Edinburgh one night a week (a Spire hospital). I self referred, got my medical records together and paid the £200.00 consultation fee. Thanks to the dismantling of our wonderful NHS I fear this will be the future.
Thank you so much! Will have a look at hunters list and get sorted, on the whole I keep pretty well and platelets under control hence why they won’t refer me, but I do have bad legs from time to time and as I have a hairdressing business I’m worried I’m doing more harm than good, although I realise staying as active as I can is good too.
It’s interesting that my local haematologist, on my initial consult, said that as soon as they had a full diagnosis I would be put on hydroxycarbamide - but, of course, no diagnosis so no hydroxy. The specialist said however, and after spending some time talking to me about my lifestyle, that if he was treating me, he wouldn’t prescribe anything yet apart from aspirin and keep watch. I’m 68, active, average weight, don’t drink alcohol any more, don’t smoke and I feel I’m doing the best I can - I do feel let down by my local haematology clinic. When I was pushing the doctor on the last phone consultation for “next steps” he snapped that he “had sicker patients than me”. He was a bit miffed when I said “and I don’t want to join them”. I feel I’m walking a tightrope. Pushing and digging for a diagnosis seems to be making me enemies but I didn’t retire to sit and get sicker - sorry ranting now. If there are other tests out there I want them run - I’ve paid into the NHS since I was 15. Rant over!
I can feel your frustration for you Megabyte. I went through this in 2008 and 2009 and was told they had been watching my bloods before this. And my platelets and whites were high for a reason. BUT was discharged after going backwards and forwards to haematology with "normal for you". My haematologist told me he had already done that jak2 test without me knowing. I had said I was going to pay for it because I had found something I wanted to rule out but then he said he had done it and it was negative.
From then on I've just forgotten to some extent all about bloods until now. I had them done last in 2015 and they were high normal. I'm still here though although through lockdown had some strange symptoms I now believe could relate to ET????
The diagnostic criteria was different until 2016 and also they weren't classed as cancers then. In fact my haematologist when he discharged me seemed annoyed at me being there but I didn't refer myself!!! He said to me "look i treat cancers of the blood " and you don't have cancer of the blood. I suggest you go and enjoy what you e joy doing and let me watch your blood. If you get ill go to your gp".
I felt like I was losing my mind to be honest. Because it was my gp who sent me and now when I was discharged it seemed like my own anxiety I was there in the first place.
. I wanted a diagnosis of something. Some reason for it. But nothing. Just that it was normal for me. BUT if they had been so normal from blood films etc and all the tests he had done then why would he have done the JAK2 anyway. HE must have suspected it.
Just don't get yourself so worked up. You're not on your own. I for one was in a similar situation. A lot younger then but rolling on to now I am back to this again. I had bloods done December and high whites and high platelets. The whites may have gone into normal but the platelets are still out now. Waiting to go to haematology but Not until April but this time I just hope they know a little more about mpns and take them a little more serious. I'm not saying I have one but I never saw the other jak2 test on the computer. And I certainly didn't have the other mutation tests. Just hope I get them now or they can give me some idea of why. Infection ruled out I think snd definitely not inflammation and no anaemia either.
Hope you get some answers but I think they need you to have some symptoms before they actually take notice. Probably that they treat far worse in people and don't think most mpns and especially et are anything to actually worry about or that's how it seems to me. My haematologist seemed to think that. I also think that lots who have complications such as clots or strokes etc are undiagnosed et maybe . And it's easier then to maybe put them down to lifestyle choices rather than your having et because it does go undaignosed so often.
What i was meaning Megabyte is because its a new classification of a blood cancer and they aren't so knowledgeable of it in most haematology departments its often easier to not diagnose and if you actually have a clot or stroke etc they would just say "well that's because you smoked that cigarette or drank that glass of wine or put on those few extra pounds." Not that you had a condition that we never diagnosed because we gave up looking because your case is not such a vanilla case.
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