Hi i wounder if anyone else has experienced the same as myself were GP's have not informed you that your Platlet count is to high and acted upon it. I have had annual blood tests taken for the past 12 years & I have just been diagnosed with ET after having a mini stroke. The doctors have known i have had a high Platlet count since 2008 and i have never been informed of this until now in 2018. After having the mini stroke i was then diagnosed in the last 2 weeks with ET and now on Clopedogral & Hydroxycarbamide. I am far from happy at being told i have had a high platlet count for the last 10 years and only finding out after it has caused me to have a mini stroke & very possibly being diagnosed with ET. It makes me wounder why they did not do something about my high Platlet before now as it would of probably prevented me having a mini stroke and would probably have found out long before now that i have ET.
Is This Medical Negligence. High Platlet count u... - MPN Voice
Is This Medical Negligence. High Platlet count unknown to myself for 10 years causing mini stroke & Being diagnosed with ET.
Hi, this doesn't surprise me at all, unfortunately. My GP didn't even bother with a blood test so my platelets kept rising to about 1000 and I had a large blood clot in the brain before being diagnosed with an MPN. I received very little help from my GP. It is quite shocking that they know so little about MPNs. I had to make a complaint to get the referrals I needed. You should not have had to suffer a mini stroke before being diagnosed but sadly I think it is quite common.
Kind regards, Cecilie
Hi Cecile. Your right the local GP's dont seem to know much about the consequences of having high Platlet counts. My blood is checked every year and all i have back when i phone up is your blood test was fine then i find out they have known about the high count for 10 years. I am at hospital again today so i will be wanting answers.
Hi, my GP at the time of my diagnoses was amazing if it had not been for him I don’t know where I would be now as I had so many health problems, he knew all about MPNs, but unfortunately he retired early from the practice. This was five years ago now and not one of the other doctors knew very much about my ET, so got Maz to send loads of information to me so that I could give to the practice, sadly I have been told that I am the only one on their register that has an MPN they thanked me for the info that I gave, so now try to stick to one doctor all the time so that I do not have to explain myself and tell them that I have ET which seems to go in one ear and out the other. If I have any problem now I discuss with my Haematologist first.
But sad to say I think there are many doctors surgeries who do not know what an MPN is, or just do watch and wait with high platelets to see what happens which can have some devastating consequences, I suppose I was just one of the lucky ones and that my GP was fed up with me always going to see him, and thought enough is enough.
So maybe get Maz to send you all the relevant information to give to your Doctor.
Jean
Hi Superwoman. I am pleased to hear you were looked after ok by your GP. Problem with GP's now is you cannot get an appointment for 3 weeks and when you do get one you end up seeing a different doctor were you have to explain yourself over and over. I have used the practice i am at for 19 years now and i have seen my allocated doctor only once. I have had around 5-6 different doctors. When you ask to see a particular one you get fobbed off.
Hi I am sorry you had to endure what you have. I just wanted to let you know that I had the same experience both GP and hospital (inpatient for another reason) ever told me about high platelets which first emerged in 2002 I have just recently found out. I was not diagnosed until 2016. I realise platelets can elevate for all sorts of reasons but surely a persistent high count should set alarm bells somewhere along the line.
However, it is a rare condition and as such, is very often missed. So speaking entirely for myself and everyone finds there own way through their unique circumstances- I had to let go of the sense that it was negligence as it was eating me up. And I felt there was nowhere to go with it. Your situation and mine, as well as others, raises the larger question of the patient's right to have access to test results. I have more or less made my peace with it by accepting that it was just not recognised.
But I now do not accept ignorance as an excuse for poor care at any point of contact with health services, since I was diagnosed. It is up to health professionals to source clear information and to be fair many do and my GP practice and Haemo team are generally quite good.
You are in my thoughts and I wish you well
Hi Susieq75. Sorry to hear you had a similar thing happen to you as myself. I cannot forgive them for this as they have had 10 years to get this checked out knowing that high Platlet count causes blood to clot. In my opinion they had plenty of time to figure that out and try to lower my Platlets to prevent the possibility of a stroke as they check my blood yearly. Luckily i had a mini stroke and not a full blown one as the situation would of been a lot worse and i could possibly not be here today or disabled through the GP's Negligence.
Hi again,
I just wanted to say that I in no way meant to imply that you should forgive negligence. I understand completely that someone needs to be accountable. I just found it impossible to find that someone, or even anyone to acknowledge that there was an oversight even though my blood counts were haywire for 14 years, and I was symptomatic in all sorts of ways, the most significant being several major bleeds in my bowel. The answer I got on every front is that platlets and white cells can be increased to really high levels for all sorts of reasons that are not clinically significant. Not being able to have anyone acknowledge that it was missed and the price I paid and pay for it even now, tore me apart mentally and emotionally. So I gave up! I am sorry you have had to pay such a price.
I really hope you can hold the system to account and that it brings you some degree of relief.
All the very best
Susieq75
I ask for a copy of my blood results. I have copies dating back nine years. Please ask as you are entitled to have a copy of you CBC emailed to you. I hope this helps. Anna
Hi Annastaunton. I will ask for them next week when i am back seeing the Haematologist
Similar thing happened to me. You could make a formal written complaint and ask what went wrong and what they are going to do to prevent it happening again. Other than that....
Hi Jane i am in the process of seeking advice on what to do about it and why my GP never acted on the high platlet count by sending me for tests.
Having a stroke will have a huge impact on your travel insurance quote.
It’s obvious to me that your GP did not study your test results as anything out of the ordinary is flagged up!!
Similar thing happened to me i was diagnosed with ET Jac 2 positive around March 2017 and prior to that had no clue my platelets had been high for a couple of years a few years before this i had cancer in the womb op.was successful and i recovered well a couple of years later i had Temperal Arteritis which took about 2yrs before i recovered then i had a stroke which took 7mths to diagnose 1year on i took a bad bout of vertigo then out of the blue i got a telephone call from GP's surgery telling me to make an appointment as my platlettes were high that is when i was referred to local hospital and was told i had an MPN knowing what i know now could all these serious illnesses been avoided if my GPs practice had more knowledge of the seriousness of this illness no one will convince me all these things i have had over years isn't connected i try not to think about it too much now take my medication as prescribed nothing can change it now but i feel GP's should be better informed......Violet x
Hi , I had a private medical in 1986 and the blood technician spotted some clumping of the red cells (basophils) and suggested myloproliferative disease ? Also Packed cell volume was high at 51 . My Gp did no even know what they were talking about and I was not diagnosed for another 10 years and it looked like heart problems. Unless a Gp has seen the condition before they rarely spot an unusual disease. They really must get to grips with computer aided diagnosis which can be up to 98% accurate against a Gp being 75% at the very best. I have a copy of my history if you are interested. Now 73 and keep well on Hu now HC and baby aspirin.
all the best Town crier.
Hi, sorry to hear you have suffered this and I understand your frustration. Different thing for me but I found after diagnosis with CMML/MPN nons that I'd had raised white count for 3 years before which my GP knew and had never mentioned. However I was told when diagnosed that if I'd been referred to the MPN specialist right away they'd still have put me on watch and wait so nothing would have been different. Since diagnosis I've never been back to the GP except for flu jab and if I have anything else, eg cystitis, tooth abscess, I tell my consultant and he prescribes the necessary. Good luck and best wishes, Frances.
I went in to the GP a couple years ago for what we now believe was a splenic infarction. The imaging was not done at the time to confirm it. I had blood work to check for pancreatitis, which was negative but when my platelets came back high with my new doctor (old GP passed away) he pulled old records. Same story. For ten years they had flagged high and were higher each time. I was immediately referred to hematology. As of now I still have not confirmed the diagnosis.
Hi ChelseaF. I hope you get sorted and the outcome is good news not bad. I have never seen the same doctor more than twice in 19 years and only seen the doctor i was given at the practice once in all that time. I think this is part of the trouble also when you are passed from pillow to post.
Hi ‘My’
I live in California. I suffered frequently recurring ischemic colitis attacks for ten years. Every few months requiring ambulance trips to the emergency department. Since my diagnosis with ET Jak2+, I always take a copy of blood test results home with me to study line by line. Platelet counts now controlled well with HC and aspirin. Are patients in the UK not given access to their test results?
Hi Jerrymohler. I have never had access to my results which are normally sent to your GP. I dont know about anyone else on this forum.
I’m in Scotland. I insist in having a copy of my results. Attending A&E, it tends to be impossible to get a copy of results.
Same thing happened to me. I was just diagnosed ET in March because this past November I had two stents inserted due to a blockage. When the nurse was giving me care instructions for going home, she said oh, by the way, you need to have someone check your blood because your platelets are very, very high & our records show they were very high in 2008 when you were here for gall bladder surgery. I was totally stunned! I had never been told this before and last year before emergency stent surgery, I had gone to many different drs because I just wasn’t feeling right. No one caught it.
Hi bjay22. It seems to be the same all over. A lot of GP's are not qualified for this type of thing so it gets brushed under the table. There has to be something on there computers which tells them straight away what the outcome can be for every type of illness therefore they should be able to pick up on this as soon as someones blood results come back. Either that or they are so over run with patients and a lot of vital information is missed through lack of time to read up on this.
Has anyone in the forum had to claim sickness benefit of any kind for ET in the UK. If so what Benefits are out there that we can claim as i am self employed & struggling with my everyday work with fatigue at the moment and my mind is allover the place after the mini stroke then being diagnosed with ET..
If I may ask what were your symptoms when you had your mini-stroke? I had an MRI today because of a suspected TIA.
Hi Yvettenaude. It was a Friday morning & I was just watching the tv and i thought i had a migraine. I started to go blind in my right eye just like a camera shutter slowly closing until i was completely blind in the right eye. Not blury but completely blind. This lasted for around 20 minutes then slowly opened again just like a shutter opening exactly the same way but in reverse. I thought nothing off it as i still had the migraine so put it down to that. Luckily i had an appointment at the opticians on the Monday. I explained to the optician what had happened and he said straight away i think you have had some sort of stroke. The optician sent me straight to the eye clinic were i was sent to the stroke clinic and diagnosed with a mini stroke. This is when they told me it was caused by the high Platlet count which my GP had known about for 10 years without informing me of this.
How very scary for you. All the best.
Sounds typical I had so many blood clots I've had 7 surgeries my platlettes were high for 4 years same time all my problems started
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