Sorry it's me again
Saw my gp today and I noticed in my notes it says essential thrombocytosis I asked him and he said this is what we thought but we sent a letter to haematologist who thought it could be reactive. Still waiting to see haematologist so now am more confused
Hi - ET is the term used when your Platelet count (red blood cell) is simply high (above 400). It can be high due to other factors (illness/infection) as well as being an indication of something more serious.
You do need to wait until you have seen a Haematologist whom has expertise in blood disorders. Try not to worry
Oh right I thought et was if there was no reactive causes I didn't know high platelets was called et
Read my reply to Tylerdog1...
The 'essential' part of ET refers to the fact theres an elevation of platelets NOT due to infection or other reasons...you're not technically correct. Thrombocytosis can be secondary when it's due to illness or infection. It occurs due to the body's response to something...
ET is an increase in platelets for no apparent reason but generally occurs in tandem with a mutation JAK2, CALR etc...
Just confused why gp would put essential thrombocytosis in my notes prior to tests haematologist and he has told me he doesn't think its sinister
Make a list of questions for your haematologist 🙂
Bone marrow biopsy is the only proper and correct way fi
Sorry, I meant bone marrow biopsy is the only proper and correct way for diagnosis. My first haematologist visit he sent me for BMB immediately fir confirmation.
Is it sore
Mine was a little sore, but no worse than a bad bruise really, by the next day - a bit of a dull ache and a little tender just where it was done. The procedure itself was worst because of the anxiety before. Once it was under way, I found out it was nothing to worry about - I hardly felt it at all.
I had sedation for my BMB and felt nothing. I got married four days later and the only (slight) ache was when I walked a bit too far on my honeymoon! It's really nothing to worry about.
I had mine done in a hospital by an experienced female haematologist under local anaesthetic, whole procedure finished less than 30 minutes, I didn't feel a thing, no pain at all.
Am worried I am waiting on jak2 results so thought I wouldn't need a bmb.
Not been diagnosed yet but convinced I have et am going out of my mind with worry
You do not necessarily need a BMB for diagnosis. It depends on which diagnostic protocol your doc follows. Different docs - different opinions.
Please don't be worried. ET can only be confirmed with BMB not by guessing. Also ET has the best prognosis amongst the group of MPN cancers, under proper treatments by a MPN specialist we can live a normal life. I have ET JAK2, on 500mg Hu and clopidergrel 75mg daily, platelets controlled within normal range. Keep hydrated, keep active, on healthy anti inflammatory diet, keep cholesterol and weight down, I have been feeling fine and life as normal, been lucky with little side effects from medication at the moment.
Please don't be too worried, stress is no good for our conditions.
Thank you
Glad to hear your doing well
I have read side effects about the meds even aspirin and I worry about progression
Try not to put the worry horse before the cart. If your thrombocytosis turns out to be secondary, then treating the cause will be curative. If you do have Essential Thrombocythemia, you can expect to live a long, rich life despite whatever challenges arise along the way. I was diagnosed with ET over thirty years ago. The ET progressed to PV about 7 years ago. Still alive and kicking!
Do be sure to consult a doc who is an expert in MPNs. Many hematologists lack experience with MPNs and really do not have the KSAs to provide optimal treatment. Here is a list of patient-recommended MPN-expert docs mpnforum.com/list-hem/ . Do not be shy in asking your hematologist about his/her experience treating MPNs. I use a local hematologist to provide ongoing care, but consult periodically with a MPN-expert who advises both me and my docs.
All the best to you.
Thank you its NHS here and am not sure I could afford a private mpn. I have been worried for 3 months its effected my work every thing
Lots of folks in the NHS deal with this. From the USA, so not an expert in navigating the NHS. Have heard of some going outside of their base system and seeking care elsewhere. Have also heard of some switching systems to access better quality care.
What I do is go about 1/x year to see MPN expert, who consults with me and my ongoing local hematologist about my care. The MPN-doc is about two hours away, but it is worth he effort.
Hope you can get it sorted out to get expert-consultation. It is really critical to you receiving high-quality care.
Just to say, you can ask to be referred to an MPN Specialist on the NHS. However, you haven’t been diagnosed yet.
I do empathise with you, your anxiety is clearly evident in your posts. I have experienced anxiety in the past, so I do have some understanding. If it’s not ‘nipped in the bud’ it escalates. When I look back now, I can see the only thing to fear, is fear itself. I think you will feel a whole lot better when you have a definitive diagnosis. It’s really not much fun waiting, and that’s half the problem. Try and remove yourself from the situation if you can. Keep busy with other things.
If you are diagnosed with ET, yes, it’s not ideal, but neither is it the end of the world. Out of all the MPNs, ET runs the most indolent path for the majority of patients. Your haematologist will put a treatment plan in place for you if necessary, which maybe just aspirin, and you will be followed up.
I have ET, I was diagnosed four years ago. I am 64 and still work part time. I’m quite lucky as I’m pretty much asymptomatic - just a bit of fatigue occasionally.
Mary
I totally agree with hunter, please do not worry so much at this stage
In the US doctors have to put down a diagnosis code even if it’s a suspected diagnosis. I had that diagnosis code two years before they were able to confirm my diagnosis.
How was yours suspected what was your diagnosis
It was discovered that I had high platelets in 2016. Records showed they had been high since 2006. ET was suspected immediately but I am negative for all mutations and it took 2 years, 3 hematologists, 2 bone marrow biopsies, and lots of testing for secondary causes to be able to confirm the diagnosis of ET.
Were your platelet high? Mine keeps fluctuating so not sure if its et it was 574 now 550. How did u cope waiting for the diagnosis and results am really struggling
Yes. My platelets fluctuated but were high the whole time. 800 when it was discovered. It caused a lot of stress not knowing. I was scared that we were missing something and I felt really unwell until I started hydroxyurea. Now I have accepted it and feel hopeful about the future. The time waiting for a diagnosis is very stressful. Hang in there. I hope you get answers soon. ❤️
Thank u I was hopeful it would be reactive as platelets reduced but maybe not.
It could be reactive if you haven’t ruled that out yet, but it’s normal for counts to fluctuate.
Its not been ruled out yet but all other bloods are cbc are normal
Hi everyone, thank you for explaining that ET is the same as just plain thrombocytosis unless it's caused by an infection. So the nurse was wrong to say I hadn't got ET! She probably didn't know what it was.
I dont understand
According to my haematologist, I have MPN - thrombocytosis. I keep reading about "Essential" thrombocytosis. I think the string of comments would suggest that they are one and the same. Another word for essential is primary. The language keeps changing. At one time, not so long ago, apparently, thrombocytosis wasn't classified as an MPN. Now it is. I also believe that MPN is the same as MPD.
I feel like I cant face my results
Stay strong. I know that awaiting medical test results can be stressful. IBut it isn’t as bad as you imagined. Whatever the result is God is under control and will make all things beautiful in His time.
The point is, Irishgal, how do you feel? That is, apart from anxiety? What if you didn't know there was anything amiss?
We are all unique but look at all the people on this forum who have all the conditions you worry about - see how positive they are and how, if they need it, they are having treatment that helps them. I know when you are waiting, it may not help to know that you are not alone, but all these other people have gone through the anxiety that comes from not knowing, and you will get through it too.
The day when you are diagnosed will come very quickly and then you can ask all the questions you need answers to and get on with whatever comes next. In my case, I have low red blood cells, high platelets and my white blood cells and neutrophils are on the low side of normal. All I am getting is aspirin.
I get tired, no support from my partner, but apart from that, it's just "take each day as it comes" and get on with your life as energy allows. Yes, I am unsure of the future but worrying about it is not going to change anything. Being positive can help. If you are not feeling ill be thankful. It's not like having cancer of any organ where it can spread. We are the luckiest people with cancer because it cannot spread. I do take supplements including Rosehips and that really helps to ward off colds. I don't suffer colds like I used to when I was younger so can definitely recommend them.
Nothing much has changed in my life except my partner expects more from me than he did a year ago and in order to play violin in concerts, I have to over come problems that are not connected to MDS/MPN, and then lack of concentration in the evening of a concert is a big problem, posing the question of whether I should stop playing. My biggest problem is procrastination and then some days I get motivated and over do it. I know I'm not alone in that! So, Irishgal, your day of diagnosis is a day to look forward to; it will hold all the answers available at the time. Then you can get on with your life and that's what is important. Good luck, and let us know how it goes.
Maggie
Very well put 👍
Thank you Tylerdog1!
Hi
I saw “ET” written on my GP notes (after blood tests) and then again on the haematologist notes.
I didn’t have a bone marrow biopsy as they have now developed a blood test which confirmed Jak2 mutation and ET.
Then a referral to Guys Hospital for treatment programme.
All seemed a smooth process so hopefully be the same for you🤞
I am worried but my gp said they have to put down a code on system that they dont think its likely to be et
Hi Irishgal,
As the others suggested, wait for a hemotologist to call the diagnosis. A BMB is the only way to be sure and to identify which type of ET. Even if you have ET, it’s a very manageable illness and we live full lives. Someone suggested red blood cells, but ET has to do with a chronic, high platelet count.
Let us know what the hemo said. If you do have ET, you will get much support here!
All the best,
Anag
Am confused as my haematologist told me I am jak2 and its essential thrombocytosis but he will confirm with bone marrow biopsy
Yes. Jak2 is a form of ET. That is the most common Form. I’m CALR. Next step is the biopsy. Looks like they are doing things in the right order. There’s a lot to learn. Check out the MPN website. Many new word for you. Lots of info. It will take some time to understand and we are always here. We were all confused, weary and unsure at first. Knowledge is empowerment. Make sure you are able to ask your hemo everything and that you feel understood and supported. I was told I had blood cancer and the hemo tried to get rid of me because he only had 7“ per patient. I refused to go away and kept asking questions.
My 5th hemo is the one I respect the most and I feel respected. I’ve been with her over a year and I also have a team of other doctors that help me with diet, and functional medicine. I feel better than I have in 15 years. I’ve got my life back. There’s a positive and abnegation side to everything that happens to us and we can learn and have a great life, of we are willing to accept the challenge.
Hope to ha e helped
Anag
Hi the same thing happened to me I had to have a bone marrow biopsy and it said I have Essential Thrombocythaemia my platelets are 800 when it should be 400 I have been on Hydrea for 4 days and I take Asprin so I hope they don’t muck you around too much good luck .
Essential thrombocytosis 
