I'm in the UK. Some years ago I was sent to haematology with high platelets snd high whites. Back in 2008 2009. I had a diagnosis of thrombocytosis only and was told to live my life...enjoy what I enjoy doing and to let them watch my bloods. I was told to go to doctors if I got ill.
Rolling on to now. During lockdown I had numerous strange things...a completely ballooned right hand....a rash that was diagnosed via video link as shingles....bruising in large purple dots.....I felt very dizzy at lots of times.
Anyway in December 2021 I went yo my gp and I had dizziness. Palpation and hypertension (which I am medicated for) and she did some blood tests.
My platelets were 501 and my white count high too. And I was sent again 2 weeks later. Again it was 514 and then again a few weeks later and it was 472.
My gp doesn't know about my problems during locksown but I did try to tell her but she wasn't interested. Anyway I have bee n referred back to haematology because I asked about my previous bloods and could it now be ET. I had blood films done buy don't know the results. I had inflammation markers done and they were normal. I am not anesmic.
I am due to go to haematology in April. I really am now thinking it's my anxiety that has got me referred as my gp has written that it was me that wanted a referral. Surely a sustained high platelets count would be a referral ? I haven't got infection either as I know to but surely a blood film would show that too. I don't want to waste an appointment buy wanted to know if anyone had mildly raised platelets at diagnosis. Mine have been just below 450 once only since 2008. And only just below. Would haematology do the mutations tests or could they have done them already maybe. I think in 2008 there was only a jak2 test. Things have changed since then and et has been put down like polycythemia as a blood cancer hasnt it and the British haematology society has there own guidelines whereby they can diagnose without a marrow test on lots.
I was worried about this from years ago. My platelets have remained steady at just over threshold and over 500 a few times. But nothing too high.
Do you think I'm being too anxious. I wanted to know what yours were at diagnosis and whether you think I will be discharged agsin with just a diagnosis of thrombocytosis with no known cause.
Sorry its a long one.
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See my profile, particularly my recent post 9 days ago titled “one year later - need help everyone”. I am in a nearly identical position. My platelets have been 429-495 for 10 years. I’ve been in the observation process for over a year now.
To answer your question, yes, it is completely possible to have ET with mildly elevated platelets. The diagnostic cut-off is 450. You’ll even find some people here in this wonderful forum who were diagnosed with platelets consistently lower than that.
You will likely be tested for 3 mutations, which capture ~85% of the ET population. Yet, it is possible to have ET without any of these mutations (“triple-negative”).
Even if you do have ET, the outlook is very good.
This forum is a great place for information, friendship, and support. I am sure others will reply with their thoughts.
My gp is very dismissive of the platelet problems. Even now she's written in the letter to haematology that they found no abnormalities then meaning they won't now maybe.
Back in 2004 and 2008 I was worried then but et was not really a thing that ordinary haematology dealt with. In fact platelets in them days had to be sustained at 600 didn't they. Its only recent that they bought it down to 450 and also most hospitals still seem dismissive of referral when they are what they call mildly raised.
I have actually made a big mistake this morning by ringing haematology and speaking wirh their secretary as after reading the referral letter from my gp stating it was myself who wanted the referral I felt I was being sent there through my own anxiety. I had thought that it was a gp who would have had to refer for that reason anyway.
Haematology receptionist said she would send another blood form out and go from there but she hasn't cancelled my appointment. I am having a 14 week wait from my gp referral so it's nit urgent but it is at our cancer centre because that's where haematology is at our hospital. She also said they are only mildly raised. I assume they see and treat far worse but I have been left wondering this from all them years previous but made to feel health anxious because they didn't do any tests in them days.
Just have to hope they haven't cancelled my appointment.
If reactive causes are not a possibility (infection, inflammation, malignancy, etc), definitely make sure you are offered the appropriate testing. Testing for JaK2, CALR, MPL is a must. Sometimes, but not always, a bone marrow biopsy is performed, but usually only to confirm “triple-negative” or examine possible progression of the disease down the road. I encourage you to read my posts and use my situation to inform yourself. We have to be our own advocates.
Hi again. Thanks for that. I worried myself sick back in 2008 to be honest but now I am much more informed.
Infection (unless hidden) and inflammation are ruled out.
And as regards malignancy then I have no idea. I was asked before I was referred about blood in poop and coughing up blood and other marker things for general cancers. But I have not had tests.
I just want this ruled out firstly. And the only way is the tests for the mutations. And I just hope now we have moved on with mpns a little they actually do the tests.
I have had some symptoms just recently with hands feet and bruising and dizziness etc. Maybe I'm just tired. Who knows until my appointment which is the end of April so a long wait.
We can't ask for specialists in this or that at our NHS. we get put with a hospital and consultant and we have to accept. Just hope this new one I get actually does understand the new criteria.
You absolutely CAN ask to be referred to a specialist and you don't have to go along with the hospital and consultant you are sent to. However, at this stage, i suggest you see the haematologist, ask for the mutation tests, then, if you do have an MPN, ask to be referred to an MPN specialist.
Thanks for replying. I am going to go along with doing some more blood tests as suggested by the secretary at haematology and then I have to phone her for results and then take it from there. I have had high platelets and whites before in 2008 so I donr want to be backwards and forwards to the hospital like last time just to be told its normal for me. I don't think they did the mutation tests or definitely not the other 2 but may have done jak2. I will just have to ask IF the receptionist thinks I still need the appointment after these next tests.
Also I have a lot of pictures of the strange things that happened to me over the last couple of years. My face suddenly went bright red in patches and burning . I got a pain palm of my hand and my middle finger was throbbing and I woke up the next day with the whole of right hand like a red balloon. Thought I had a spider bite at the time. I had to elevate because of pain.
Then I developed 2 large red patches on my side like shingles and severe itching of my shoulder in the bath. I was diagnosed shingles by my gp over video but it didn't seem like shingles. It was painful but my back was painful more and bruised.
Then severe itching of hands and feet snd redness again.
And small bruises appearing on my arms. And my thumbs got purple painful bruises and now this weekend my fingers too. My digits have a throbbing pain and a bruise appears and then the pain suddenly goes and I'm left just with a bit of a bruise.
I know I'm waffling on but would you show these to the haematologist. Do you think they could relate to et or even pv. My haemotocrat is just near on maximum but not flagged. My whites are high being neutrophils and lymphocytes (had neutrophilia lots but never had lymphocytes high before) . My basophils are just bang on maximum.
I think it’s crucial that you mention all of the symptoms you have experienced recently including your past history when you have your appointment in April. Don’t be intimidated, advocate well for yourself; a good consultant can only work with the tools available to him/her, so the more information you can provide the better the outcome will be for you.
Write down all of the relevant questions in preparation for your consultation. If you’re not happy with the outcome be strong and ask for a second opinion. This can be done through your GP or haematologist. I have recently asked for a referral to an MPN Specialist through my local haematologist, so it can be done!
About me: I was diagnosed with ET Jak2+ with platelets at 500, so a relatively low count. However, as others have mentioned there are other mutations CalR and MPL, also the possibility of ‘triple negative’ diagnosis.
What you mention happening to your fingers, look up ‘Achenbachs Syndrome.’ I get this on very rare occasions. It actually happened yesterday on my left thumb, I haven’t experienced it for a while prior to this. I have no idea if it is ET related or not. Somebody else on the forum mentioned they experienced it too.
Thanks for reply. Yes I have looked up that on my thumbs and fingers before. That was backbin 2008 when I went to my gp with it as it hit my toes too then. When it was lockdown and I had all symptoms I thought I had caught covid maybe and it was related to covid. I never got tested and my hand was worst. It went like a balloon . I tried to show pictures to my gp in December but she wasn't interested. She just ordered the bloods. Hopefully my consultant will be if I get to see him.
You are 100% correct in seeking consultation with hematology. You have multiple indicators of a possible MPN. Even low grade thrombocytosis that is maintained over an extended period of time needs to be properly assessed. This can put you at risk for thrombosis, hemorrhage, and microvascular symptoms. Some of what you describe sound like possibly these sort of symptoms. While it could be something else, a MPN definitely needs to be ruled out.
Unfortunately, most doctors, including many hematologists, lack knowledge regarding MPNs. these are rare disorders and most doctors (even hematologists) rarely if ever encounter MPN cases. Suggest you ensure that you access consultation with a MPN Specialist. here is a list.
The standard protocol for assessment would include checking for the three MPN driver mutations (JAK2, CALR, MPL). Some docs will start with just the JAK2 since it is the most common MPN mutation. Many hematologists will also recommend a bone marrow biopsy. There will be a number of other tests done to check for conditions that could be causing the thrombocytosis and leukocytosis.
It sounds like you have already had some blood tests done. Suggest you get those results either hard copy or through an online portal. This data is your property and your right to access anytime you wish. I maintain a complete record of all of my results and ensure that all of my providers have access to my case files. I also act as my own case manager, insist that all providers work collaboratively, and treat me in a holistic fashion. I would never accept a provider being dismissive or disinterested in relevant symptoms I am experiencing. Your GP is the doc who is supposed to take a comprehensive view of all of your health conditions. If this doc is not interested in what you are experiencing, suggest it is time for a new GP.
Yes I think you are right about changing doctors . Even when I had a telephone consultation the other week regarding my results and I mentioned ET and I also mentioned a fact that if someone had critical illness cover but had all this ongoing years before but no diagnosis would the claim be dismissed. She said there is nothing to suggest this is a critical illness so I'm lucky there.
I was just sounding off because I never get an actual diagnosis of anything. Just normal for you. I think I need to ring snd make appointments every time I get spontaneous bruises etc. I couldn't during lockdown but they are open now. That's my trouble I don't go to them enough. I just takes photos snd then when I do go try and mention it but they won't look Maybe hopefully haematology will. (Unless I've shot myself in the foot this morning by speaking to the receptionist.....she's sending out a blood form and she looked at my bloods and said they are only mildly elevated. They were 501. 514. 472. That's my last 3 and wbc 13.5 about so again mildly.) She said to go to get my bloods done again now and we will take it from there. I takebit they will miraculously go just on the edge of normal this time and i will have my haematology appointment cancelled. I bloody hope not because its always the same when I have bloods done. I don't think she would be allowed to cancel it.
Hi Not diagnosed, I was diagnosed with PV last year, Jak 2 positive.
I'd experienced bad headaches, feeling faint, parathesia, brain fog, blurred vision, numbness and cold big toe, tinnitis, hot flushes, severe fatigue too. My platelets have never been above 500...Highest HCT was 0.51 too. HB 175.
With regards to critical illness cover I was successful in my claim...as you have not been officially diagnosed ??? You can go from your clinic letter from your first haematology appointment as your diagnosis....if you get a definite diagnosis.
Good luck with your forthcoming appt. If all your symptoms become worse I would be tempted to ask your GP to send a follow up email with list of symptoms and photos to try and expedite your appt.
As the hospital are requesting more bloods they are likely the do the wider range of blood tests required...hopefully
Hi Rachel. Yes I have experienced headaches a lot. And I will hopefully find out soon. I told my gp again about my pictures but she wasn't interested. I wonder if I could send them to haematology maybe. The secretary????
I really need to know about the films done don't I before rushing in. But surely haematology would have rushed the appointment if they looked suspicious.
That's what I have tried to ask both my gp and the secretary yesterday. I don't want to waste an nhs appointment if its looking infectious. Definitely not inflammation because I had a million tests done and all negative.
But other cancers haven't been ruled out. I have colonoscopy every few years because of family history. I have a thyroid nodule that has been biopsies 3 times and still inconclusive. I have no symptoms otherwise of cancers so I would like this ruling out first. But I understand it could be something else. But my actual symptoms could and more likely point to mpn.
I thought my age tbh. Menopause but I don't know. Had them for years but only mostly in bed. Not otherwise or barely otherwise. I assume I have written somewhere about night sweats??? Or do you mean the redness of my face? This was not a flush. It was whereby my face went blood red in patches and felt like a sun burn but it was not. I was not sweating or anything. Just burns on my face.
I don't think that was menopausal type at all. But night sweats I have always had for years. I have pictures of everything. It was strange.
And I wonder if you are thinking polycythemia there. I have just looked at hunters post regarding Facial erythema but I was told in 2009/ 2010 that they had done the jak2 and most people with polycythemia have a jak2. I did not. So I have no idea tbh. I never was told I had a jak2 done or was I ever shown it.
I don't know what causes sweats in mpns. Perhaps someone with more knowledge could answer that. I would wait until you've seen haematology before adjusting your hrt though.
I'm very adapt at increasing it according to symptoms. it's a transdermal gel so I'm allowed to do that according to my symptoms. I plan on taking it always regardless of anything xx 🙂
I see what you mean now. And yes it's good that it helps .
I notice you have raised inflammatory markers. I actually asked for the esr and crp tests to be done before my gp sent off the referral because I honestly thought I had arthritis. It said on blood form that "patient thinks she has arthritis ". I thought it would explain my platelets problems. Inflammation can cause the platelets to be raised. Mine were normal but I do hurt so bad at times Has your gp done snything about your esa and crp raised?
My gp and the gp I saw yesterday both said they're not overly high at all and they explain that you go by half your age and add ten or something and it can be that higher and ok. They said it wasn't bad anyway they see really high numbers.I've had a bursitis in my hip a couple of months and it's ok now I've had my b12's. Bumped up. I had tendonitis in my Achilles and the b12's took that inflammation away too. I feel great in 48 hours after my b12's.
It calms me and I can think clear and it helps my thyroid hormone work better and I can sleep and I'm not breathless and I have so much more energy. It's a life saver.
Have you got arthritis then. ?
Mines just an inflammation in the tendons, can get in any of them but definitely the b12 sorts it out.
Just to say I've had X rays joints are fine.
And I'd recommend B12 to anyone. It's water soluble. If a person can absorb it, a spray of Methylcobalamin is the best.
I have to have intramuscular injections of it. I have pernicious anaemia.
I didn't know b12 helps with inflammation. And no I don't have arthritis. I honestly would have bet my life that I do but all my rheumatoid and inflammation bloods were apparently fine. My folic was massively high for some reason though and I've read high folate can mask b12 deficiency. My sister has b12 injections too. I asked my gp about my folate being so high and she said that's been looked at by a senior doctor so that's OK.
I've looked at the graph of my folate on my records and it's now 4 times my regular. I'm not happy with that being left tbh. Not when it can mask b12 deficiency. And I know I hurt at my joints.
My b12 was ok but as I say, high folate can mask b12 deficiency. I aren't a big green leaf person either. I do take a tesco menopause multivitamin and only through your post I have looked up b12 deficiency and it seems that if you take multivitamins containing folic acid then you prevent the red cells being enlarged so mask deficiency. I will stop multivitamin now and try to ask haematology to do another b12 maybe. Or my gp. There isn't much folic acid folate in my multivitamin though. Just a thought?
I had a spine xray some years ago and I had wearing on two things and I remember the gp saying arthritis. But now they say not? I'm confused on that one. I was taking diclofenac but she took me off them. That was also the same time I was being investigated for high platelets and whites.
I don't know if this folate is worth mentioning to haematology now. Its hugely raises for some reason. Buy as I say my gp said it was with a senior doctor and that's OK. I assumed she meant they had looked and said it was OK. But could also mean it's out of her hands to do anything about. Regardless I haven't heard from gp about it.
I wish we could access online our hospital blood tests the same as our gp ones.
As you noted MPNs are since ~2008 considered Cancer. This has been a good thing to help get more attention to the condition.
You mention itching associated with a bath. That is a classic PV symptom. Your WBC at 13 is high, also common with PV, but of course can have other causes, esp if it's temporary.
If it is available to you you should ask about NexGen sequencing which looks for non-driver mutations. These can be important, and in the future are likely to be more so to guide treatment decisions.
<<Patients with a suspected or diagnosed myeloproliferative neoplasm (MPN) should undergo targeted next-generation sequencing >>
<<We have identified multiple subgroups of driver mutational profiles in a large cohort of patients with MPN that risk incorrect diagnostic classification if evaluated using sequential or allele specific testing strategies,” ... “These subgroups are efficiently identified using targeted NGS, and we recommend that this approach should be standard of care in the investigation of MPNs.”>>
There is another post discussing mildly elevated PLT that may be of interest.
Hi etguy. I have always had high platelets or high end of normal once. Since 2008. It was only in lockdown i had one thing aftwr another. I will try and ask for what you say. My gp had not really heard of et back in 2008. When I had googled she said it was just thrombocytosis and just normal for me. My itching when in the bath was intense and I developed large red patches like hives. It was said to be shingles. Also my face went blood red in patches just a few months before. Just random things.
Both of these things are associated with MPNs. That is not to say this is what is going on for you. We have no way to know that. That is why it is so important for you to be assessed by a MPN Specialist who will look at all of your symptoms, not just the numbers on labs.
HiMy platelets we’re high 600s when diagnosed . I was diagnosed quickly on the first visit to my local haematologist following a specialist blood test used to diagnose. Was then immediately referred to Guys in London that have dealt with since within their specialist unit.
It does worry me when others struggle to get a correct diagnosis when mine was so quick, straight forward & effective.
As others have said make sure you see a specialist & push for tests to see if there are any mutations or evidence for MPN. I sincerely wish you all the best & let us know how you get on.
My Platelets were up to 765, I asked to go on Xeralto, an American Drug, as one can not eat K on Warfarin...Xeralto you can eat Vitamin K, No INR TEST everyday or Clexane Injections...I was Diagnosed with CEREBRAL VENUS SINUS THROMBOSIS....now MPN....A close friend of teens, a Dr. in Florida told me about Xeralto, a far more modern Drug....NHS does not let you know about this, as $524 per month, they would rather let you suffer on Warfarin. Which I hasten to add is Warfarin.
Don’t try and 2nd guess .go and seethe haematologist. Tell them everything and let them do a full work up. My gp was reluctant to refer but the haematologist took it seriously
Haematology have sgreed to see me. There is a new system called advice and guidance now in the UK. The doctor asks for advice and Haematology have agreed to see me but it's worded from the doctor that I am concerned with high platelets again. I just don't want it be my anxiety.
I just hope it'd not cancelled. I need to show and say my symptoms to be honest.
Well I received my blood form from the haematology secretary and its just basic bloods and says pre clinic. Just FBC with differential and U AND E AND LFT. Both u and e and lft were done in December and totally normal. I dont understand why them tbh when nothing was wrong before or ever tbh?
That actually makes sense. Starting with verifying the FBH and looking again at kidney and liver function would be the normal starting point for any hematology assessment. The assessment is going to look for potential secondary causes of elevation in blood cell numbers. Also note that it is common practice to get sets of the same labs to look at trends over time.
Thanks again hunter. I always have u and e and lft done annually and they have not been out before. I can see my graph on patient uk access to my gp. And they are always good.
I am going today to get my bloods done again and I have noticed that besides neutrophils raised my lymphocytes have doubled now. Over the years I can see from 2004 I have never had raised lymphocytes before. Only just above normal but still they have always been 2 and now 4.5. So over double. I think that suggests maybe viral. I don't have any raised lymph nodes as I know to. But I wondered if anyone had this happen.
My platelets have been raised before and I was told to live my life...enjoy what I enjoy doing and to go to my gp if I got ill. And they would be watching my bloods when I had them done. I admit since 2015 I haven't had them done by my gp and hospital bloods are not on my gp records. And all my letter to my gp from haematology are not on my records for some reason.
I had wondered all them years ago of PV or ET but they just dismissed me. I even said to my haematologist I would pay for the jak2 test but he said he had done it although never showed me proof. He discharged me and here I am again. But the diagnostic criteria changed????
My white cells count is only 13.5 and my platelets 501 514 472. So just have to hope I just had a bad hidden infection. That's what they said last time. I must have hidden infection. I rarely go to my gp now because of trust and them putting everything down to just anxiety. My hematocrit/haemoglobin is normal so surely if it was mpn it would have gone up a lot. Been about 43 I think. And the symptoms I have had relate more to pv or do people with et have symptoms similar to pv.
Whatever happened in the week we locked down (I had thought I caught covid) has had a lasting effect on me. But covid generally causes low platelets according to doctor google. I had one thing after another and I'm just not feeling right. Maybe it is severe anxiety only. I don't know.
I really need to see them to show them my pictures. That's all I could fo is to take photos. I couldn't go to see them.
It sounds like you are on top of things. Your concerns are reasonable and it would be normal to be stressed about the unexplained results. You are correct that the LYMPH being at 4.5 (out of reference range) could be due to a viral infection. It is the trend that matters on that value. Occasional spikes could be nothing more than exposure to a virus.
The WHO diagnostic criteria were updated in 2016. They now include the presence of one of three acquired mutations - JAK2, CALR, MPL. You should be tested for all three. I would insist on seeing the previous JAK2 testing. I would also insist on repeating that lab along with the other two driver mutations.
Some of what you describe is consistent with PV, but do know that people with ET experience those things too. It is possible to have a masked PV or to have ET that is progressing into PV. It is also possible to have an unclassified MPN. It is also still possible that there is a secondary cause for all of this that has just not been diagnosed.
What you really need is an answer. Being blown off and told to just ignore it is not an answer. Even if the answer is "we just do not know" - at least that would be an honest answer. Hopefully you will get to the bottom of it soon.
Thanks for replies. And my god hunter you have been through the mill. And just relooked at my hematocrit and it was 45. So although normal if you have pv I think it is slightly high maybe. Going by someone else's posts it seems that they want it 43% for women which is my last test but other 2 were 45.4.
I have relooked at all the red cells and never (-only once in 2004) had hematocrit out. So it seems pv is most likely out for me but et could still be a cause maybe. Unless it's secondary and inflammation has been ruled out anaemia too but I don't know if I'm showing infection.
My results are back platelets 458 and wbc 9.7. They are still higher than normal aren't they so probably best to go to my April appointment. What does anyone think. My wbc is down though
Have your 5 Gene's Tested at ROYAL FREE HOSPITAL IN LONDON, local cannot do...You will be sent Forms, your Drs OR FLABOTAMIS CAN DO THEM, THEY WILL BE SENT BY TAXI FRON YOUR LOCAL HOSPITAL....they will test Jak 2 being one of them....Your 450 was Borderline ok....mine are 765....
I was replying to a member elizajoe10 yesterday who was diagnosed primary et by her gp. It says now Hidden by her posts and her thread has disappeared?? Does that mean she has left the forum. Just a question to anyone that knows?I'm confused
Maybe something was said that wasn’t appropriate, but normally just that isolated response would be taken down. I’m not sure if a person who has posted can take down the whole thread? Very strange!
Well I have just had the genes tests. And there were 6 bottles. I think different jaks and then calr and mpl. Just got to wait now until June for results.
She said I deserved to get them done for all my work lol.
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Critical illness claim rejected.
ET diagnosis without biopsy
Mild small vessel disease and ET
How do you cope with the fatigue.
