Post-Covid I have had slightyly raised platelets for five years. My GP referred me to the (not so) Rapid Access Cancer Unit because all my other blood tests were fine and fortunately my scans were clear. I was however discharged back to my GP and not to haematology.
I had more blood test and - surprise, surprise - my platelets are still too high. I have a telephone appointment with the GP next week. Should I push for a referral with haematology? It seems that with the NHS under so much strain (39 week wait for haematology referrals) there seems to be a bit of reluctance to refer people. My symptoms, mainly bad fatigue and headache, can be explained by my Long Covid and fibro but I suspect the potential ET might play a role, too.
I was also wondering whether there are any MPN specialists in the West of Scotland or possibly the Central Belt.
Thanks a lot!
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mazeoffire
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I do have Long Covid but my inflammatory markers are all within the normal range. There seem to be very few cases where Covid or Long Covid have raised platelets but it seems to be more often being connected to low platelets. I have tried cutting out inflammatory foods but I didn’t feel much different.
I think you are being prudent to seek a clear answer to what is causing the thrombocytosis. Your GP should be able to order a MPN Myeloid panel which would include at least JAK2, CALR, MPL. Some panels include other mutations as well. You may also need a bone marrow biopsy but that would require hematology to be involved.
Suggest starting with doing the labs that your GP can arrange. This could include the MPN Myeloid Panel, CBC, CMP, prothrombin times, LDH, TPO, Peripheral Blood Smear, and an iron panel. Your GP can discuss what tests he/she is willing to order.
Here is a bit of information about assessing primary and secondary thrombocytosis.
The referral guidelines for NHS Lanarkshire, which I found online, state that GPs should refer counts over 450 for over three months as a standard referral.
What was your latest PLT result? Is it slowly but consistently rising over the years? I had that over a period of about 7 years where it ended up at about 1 million.
The receptionist didn’t say when she phoned, just that they were high. I went from I think 280 pre-Covid up to 600 and then down from there, but never below 450, which seems to ve the local lab’s cut iff. They were 480 before my scan in August and the doctor said it was good that they were had gone down rather than up. In a way I am obviously relieved about that but it’s still so much higher than before.
It seems your peak at 600 was a one time event, with upper 400's being your steady lately, is that right? Absent treatment MPNs often have long term being up. So that is good yours is steady well below its peak. But as others say here, tests for MPN is a good idea.
On the reference limits for PLT, some Drs are ok up to 600, mine would adjust my therapy if I went ~600-700. But 450 is a common limit at many organizations. My lab sets 360, which I usually exceed.
Please ask for a referral to hematology. I also have long covid and long covid alone cannot explain the constantly elevated platelets. You might get elevated platelets during infection, autoimmune episodes or other type of injury and inflammation, but they will not stay constantly elevated. In my case, it was discovered I have hereditary thrombocytosis when I did not recover from acute Covid-19. Luckily, no one tried to blame the elevated platelets on long covid.
I hope you get to see a specialist as soon as possible.
Thank you for messaging.Yes indeed you are very right to ask to be referred to haem,the specialist team will help you and find your diagnosis. Please do let us know how you get along. Take care Kind wishes.
Morning I think you should push for haematology referral as your symptoms are escalating .
My platelets were slowly rising over a ten year period I ended up referred to so many specialists because no one related the symptoms eventually gastroenterologist referred me to haematology but still they felt my levels in the 500s weren’t high enough but I was getting visual distances and terrible pains in my legs all attributed to other things . After Covid they rose to 750 .
I was started on clopidogrel by Gp whilst
I waited for more tests with haematology and the head pains visual changes asthma and leg pains got quite a bit better . I eventually had BMB which showed jak 2 ET .. L
firstly, always get copies of all your test results so you know exactly what they are. This should be easy via your GP. If you do see a specialist of any sort, make it very clear, at that appt. that you want to be sent everything ( results, comments, diagnosis, treatment options, advice given etc) that they send your GP.
If you don’t get that, do a subject access request , SAR. Very easy to do.
Secondly did your gp test all the usual stuff: vits D, B12, folate, iron panel, thyroid hormones. If not get these done too. So many people are deficient in essential nutrients but Drs generally have no clue and/or no interest. When I corrected my B12 deficiency ( no help from any Dr) all the symptoms I went to gp with went away ( including fatigue and severe headaches) and despite plts remaining +/- 1450. NB- being in range , with vits, is not the same as optimal for good health. Again getting your blood tests will reveal what’s been tested already , then you can see what still needs to be done.
Thirdly, if you believe your symptoms are related to COVID in any way ( post infection/jab) there are established detox protocols easily available online and it might be worth implementing this to see if it helps too.
It useful to rule out all other things first . The process also teaches you more about your body so you can be more pro-active with your health in general.
I’m happy to suggest some excellent books if you are interested.
I had exactly the same with an unrelated blood test. I was lucky in that my GP made it her personal mission to help me find out what was wrong when all the other scans came back ok. I have now been diagnosed with ET and am 4% Jak2. I found it really hard being in limbo not knowing. At least now I’m diagnosed I have checkups booked in etc. see if you can push for a referral or a bone marrow biopsy.
I went to my GP possibly get some HRT and that got somewhat sidetracked. I nearly fell off my chair when the GP said my platelets had been high for several years and we needed to rule out certain things before we could discuss HRT. I was somewhat concerned about the ruling out bit and, surprise surprise, the internet came up with a range of unsavioury solid organ tumours connected to high platelets. My urgent referral moved at snail’s pace due to staffing issues but fortunately came back only with a few harmless cysts.
Mine are at about 800, I've been taking aspirin but I am delaying going on hydroxy urea, next appointment June. I've got normal blood pressure, weight, etc. You just have to take a decision...
Hello. Your raised platelets could be reactive to something else and it is maybe reassuring that your other counts aren't out of bounds.
I had a similar situation though pre diagnosis - platelets consistently mildly - moderately raised for 5+ years (HCT also too high starting a year or two before then and I had quite a lot of symptoms). Raised platelets were attributed (by a general haematologist) to reactivity to iron deficiency. I understand that it was difficult to see the emerging PV but I wish I'd known more at the time as earlier diagnosis and treatment could perhaps have avoided a (small) infarct and I'd now be low risk rather than high. If an MPN Specialist had looked at the history at that time maybe it could have been picked up earlier.
So - based on my experience I would encourage you to ask to be referred to haematology (even better an MPN Specialist). Perhaps be direct with your GP and say you are concerned about the possibility of an MPN given the prolonged raised platelets and ask if you can be tested for the driver mutations. They may say no but it will put the possibility in their minds - given the rarity of MPNs it is understandable that it isn't the first thing they test for. In the grand scheme of things, however, it may be easier and cheaper for them to do a blood test now than have you keep coming back to them with concerns over time? If haematology referrals are long it would also get the ball rolling so if your platelets continue to rise you don't have to join the start of the queue later.
While our health system is different to yours, I have been under the care of an awesome Haematologist for many years now as I have ET. The only advice I can offer you is that I have chronic fatigue the when my platelets get beyond 600 or so. It really does have an effect on your energy levels - don’t let anyone tell you it doesn’t. I don’t know what your platelet number is, but you should ask to see a Haematologist in my opinion.
Sorry you’ve had so much uncertainty, it’s very debilitating. In my opinion you should press for a Haematology appointment just to get the ball rolling and hopefully to put you mind to rest. It’s better knowing than just worrying. Every good wish. Paul
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