I was diagnosed with ET (CALR) three and a half years ago and my haem put me on HU to bring my platelet count down. At the end of last year after some research I asked to come off the HU for a while because it made feel so fatigued. The haem agreed but did a BMB to check there was no sign of PMF. Happily there wasn’t but now I’ve been told I will only need to be seen once a year; previously I was on the telephone clinic system and having a blood test every three months.
I just wondered if anyone else with ET (who is not on medication for it) is only seen once a year? I appreciate I may be low risk but my platelet levels can rise quite high without HU and so I feel a bit worried about having less frequent blood tests now.
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Mickymitch
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Hi Mickymitch,I have ET and not on medication yet(will be soon as my platelets are1500 at the moment)and i have a blood test every 4 months..was offered a choice between 6 or 4 months and as I felt 6 months was too long went for 4.You should speak to your gp -may be they can book you for regular blood tests.Hope your platelets will stay low ..keep well
I used to go at 6 months for about 12 years. Then 3 months, then 1 month and them PMF now every 2 weeks. I had no signs of PMF in Feb 2018 BMB and in Nov of 2018 was diagnosed with PMF. It happened fast for me.
Hi Mickymitch, I was diagnosed with ET Jak2+ about 3 yrs ago with platelets around 1300. Not on any meds . Last count was about 950 . I go about 1x year. (Low risk, age 52, no previous thrombosis, not symptomatic) . I have changed my diet a lot and exercise regularly.
Thanks to both of you for your replies. I think I would be a bit happier with at least 6 monthly blood tests - as you say ccsial things can change quickly. I’ll speak to my GP and ask if they will do an interim blood test. Sorry to hear about the PMF diagnosis ccsial but hope you are doing ok.
Hi, I go once a year to Haematologist at the hospital and every 6 months to my GP for a virtual clinic where it’s sent by my GP to the haematologist. I’m in Edinburgh and I just call up the Haematologist’s secretary if I have any questions. Hope this helps
Hi. I’m the same as you and I have a blood test every 12 months
Hi Micky
I like you, were diagnose 3-4 years ago. ET with CALR mutation. I have always seen by hematologist every year since diagnosis, with blood tests every 6 months. At my last visit in last October he extended it to every 18 months! He didn't mention my blood test regularity so I continue to have them every 6 months for my own interest. My last test in May, my platelets were 750, keeping pretty stable. Only still on aspirin 100mg daily. He was still happy with me not starting HU or any other medication, looking after my cardiovascular health. I am keeping well, still working! exercising and keeping happy!!
I was diagnosed 3 years ago. Originally as ET, now Post ET/MF. I am also CALR Type2 w/ ASXL1 HR mutation. At diagnosis, my platelets were 1.7Million. I have already experienced at least two (2) TIAs (minor brain strokes), that I am aware of, and High Platelets is considered to be a relevant factor. So, it is well worth just keeping an eye on your bloods periodically, just to be sure that there is no imminent danger lurking.
Ever since my own diagnosis, I decided to edify myself on all things MPN, and as a result, I keep a record of ALL my tests, and Full Blood Counts (FBCs) in particular, and map them to see the trends that appear over time etc.
Perhaps you do not desire or need to follow your own results as closely as I choose to monitor my own. However, just to provide yourself with some relative 'peace of mind' or you need to do is monitor your own bloods (FBCs) periodically with your GP, (say bi-monthly?), and if by chance anything adverse was beginning to trend then you could simply forward your test results to your specialist... rather than waiting a year to see them etc...
Hi Micky, I assume you are in England. I have CALR too. I find that the patients’ visits to the hemo are much too rare. I’m in Austria. I am there at the very latest every 3 months. At first, I was seen monthly until my treatment was adjusted. I had my first TIA (very small) at about 600, second at 750 and the third, biggest one at 823, where I was finally diagnosed. Regular blood tests due to my thyroid were biannually, that’s why I know that the illness started in 2010. I was diagnosed in 2017! My doctor was blind for a long time! If you feel better and are able to have your piece of mind, try to get more appointments in. Some patients are jumpers (like me) where the platelets go up and down. Others are completely stable and go to the hemo biannually (according to my hemo).
Keep track and that should help your hemo make good decisions. If you don’t feel you can trust him/her, find one that is easier to talk to and also listens. Cheers. 🙂 Anag.
Thank you so much to all of you for taking the time out to reply. It seems to depend very much on what part of the world we live in as to how often our bloods are checked. Like some of you, I am low risk so don’t need to see the consultant as often as others but I do get very bad headaches when my platelets rise so I think I’ll ask my GP if I can have a blood test through them once every 6 months.
Hi MickyMitch- Are you still getting your blood count report via the clinic system? If so, maybe they will flag a high count via that system and schedule based upon the results of those 3 months? Since you were on HU and went off I would think you should see the Haem at least 2 x's per year, but maybe they are monioting and will schedule when needed via the 3 month blood tests...?? Are you on any meds now?
No, I’m still off the meds but platelets are beginning to climb. I was taken off the telephone clinic list when I came off the HU and now the haem has said he only needs to see me once a year. Incidentally I saw a haem I hadn’t had before, not my usual consultant. I have rung the MPN nurse and she says to ask the haem if I can go back on the telephone system. I don’t really want to see the haem unless there are issues but I would like to check my bloods every few months. I think my MPN nurse is going to try and sort out an appointment for me so hopefully all resolved. 😊. Thanks for your reply.
Hi, I'm not on any treatment but considered low risk due to age and platelets, whilst being high, still being relatively low in the grand scheme of things.
My haematologist recommended 6 monthly tests with a direction to go back should my count reach a certain limit - albeit I believe he will just complete further testing as opposed to provide any treatment.
My GP has suggested moving to annual tests but I'd rather incur the costs and get it completed 6 monthly for piece of mind.
That’s interesting, perhaps there is a move to less frequent blood testing now that they are learning about our disease??
Like others have said though I think it is worth keeping an eye on our blood counts because things can change relatively quickly so like you I think I’d like six monthly testing for reassurance. Hope you keep well! 🙂
I see Dr Knechtii roughly every 2 months. I was supposed to have a pint taken yesterday but he's going to wait another 8 weeks and check my levels again. I was diagnosed by accident just over a year ago with PRV and am on aspirin and Hydroxy. Which side of Bath do you live as I see you are quite near to me?
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